Jump to content
RemedySpot.com

Fwd: askthedoctor digest: September 08, 2002

Rate this topic

Guest guest

By Guest guest
in Health, Medicine and Natural Healing 02

 Share

Recommended Posts

Guest guest

Guest guest

Posted
Posted

Subject: Shaking Up your Doctor: Getting More From Your Visit

Date: Sun, 8 Sep 2002 09:26:41 -0400

X-Message-Number: 1

What to Expect from your Visit and How to Prepare

Shaking Up Your Doctor: Getting More From Your Visit

Abraham Lieberman MD, Medical Director, National Parkinson Foundation

Introduction

When you visit your doctor, it’s a successful if on leaving you know

what’s wrong and what the doctor can do to make you better. The meeting

is less satisfying but still successful if upon leaving you don’t know

what’s wrong but the doctor has told you, in words you can understand, why

he (or she) doesn’t know what’s wrong, but can tell you what to do to find

out

The visit’s a failure if on leaving you don’t know what’s wrong, the

doctor can’t tell you what’s wrong, and he can’t tell you how to find

out. The meeting’s a failure if on leaving you’re more anxious,

depressed, and confused then before. To minimize such failures, ever more

common is an age of shorter visits, harried doctors, and more complicated

problems, there are things you can do. Start by asking yourself why

you’re seeing the doctor. If you can’t say “why†in a few words, he might

not be able to help. He’s a doctor, not a mind reader.

When you visit your doctor you’re probably anxious or depressed thinking:

“What’s wrong? Is it bad? Will the doctor know? Can he help?â€

You may be angry (whether you realize it or not), thinking: “Why me? Why

do I have to be sick? Why do I have to see this doctor? And why do I

have to pay for the privilege?â€

Don’t let your anger get the best of you. Thus, if after being diagnosed,

you don’t agree with or like the diagnosis, don’t “shoot the messenger:â€

He may be wrong and deserve being shot, but he may be right! And,

sometime soon, you may need him. Remember, you not he has the problem,

and you not he needs help.

In Parkinson disease (PD) there are specific situations for which you

should prepare.

(1) When you’re diagnosed (2) When you need treatment. (3) When you

need L-dopa (4) When you’re anxious (5) When you’re depressed (6) When

you have difficulty thinking (7) When you’re not sure it’s PD

1. When You’re Diagnosed

If you think you have PD, or your family doctor thinks you have PD and

refers you to a specialist, these are some common questions:

How Do I Know If The Specialist Is Good?

If your family doctor picked the specialist your doctor has probably

worked with him (or her), knows his credentials, knows his abilities, and

knows how he deals with people. However, in an era where HMO’s and

insurance companies limit your choices, this may not be so. Ask your

family doctor, or the specialist (or the specialist’s office manager):

Is The Specialist A Neurologist?

To practice as a neurologist a doctor, an MD (medical doctor) or a DO (a

doctor of osteopathy) must complete an accredited 3 year neurology

training program.

Is The Neurologist Board Certified?

Upon completion of their training program, a neurologist takes first a

written and then an oral examination in Neurology and Psychiatry. For a

neurologist 75% of the questions are on Neurology and 25% are on

Psychiatry. For a psychiatrist 75% of the questions are on Psychiatry and

25% are on Neurology. Neurologists and psychiatrists, upon successful

completion of their examination, are notified by the American Board of

Psychiatry and Neurology as being certified in either Neurology or

Psychiatry. Certification by the Board attests to, but doesn’t guarantee,

competence. Board certification (as evidenced by a diploma) is like a

Good Housekeeping Seal. There are exceptions. The best neurologist I

knew was not Board certified, he couldn’t bother with the test.

Is The Neurologist A Movement Disorder Specialist?

Within the field of Neurology there are accredited (by separate Boards)

sub-specialties. Movement Disorders (which includes PD) is a

sub-specialty but is not accredited by a separate Board. Movement

Disorders includes PD (approximately 80% of the practice), the PD-like

disorders (Multiple System Atrophy, Progressive Supranuclear Palsy,

Corticobasilar Degeneration), Dystonia, Essential Tremor, Huntington

disease, Restless Legs, Tardive Dyskinesia, and Disease. To be

called a Movement Disorder specialist a neurologist must take a 1-3 year

fellowship in a Movement Disorder program after finishing his Neurology

training. Usually, the Movement Disorder specialist will display a

certificate attesting to his completion of the fellowship. If you do not

see such a certificate, ask where the specialist trained in Movement

Disorders. There are excellent neurologists who treat PD and did not

complete Movement Disorder fellowships. They, like all most Movement

Disorder specialists, belong to the Movement Disorder Society (MDS). The

MDS is an excellent organization but it is not a Good Housekeeping seal of

approval. Any neurologist, or researcher can belong if they pay an

annual fee.

Is The Movement Disorder Specialist Famous? Is He (or She) a Thought

Leader?

Does his (or her) name come up when you search for PD articles on Google,

or Medline, or the National Library of Medicine, or Scirus.com? Is he

(or she) listed in the “Best Doctors in America?†Is he (or she) on

television whenever there’s a “breaking†story on PD? Is he (or she)

J Fox’s, or Janet Reno’s, or the Pope’s doctor?

The above reveals the specialist is familiar with PD and it’s nuances.

But he or she may not be right for you. He (or she) may be too busy doing

research, writing articles, giving speeches, or traveling to see you when

you want to see him. Or, when you do get an appointment you may not see

him but one of his fellows or associates. And while he may be available

for J Fox, or Janet Reno, or the Pope, he may not be available

for you.

What Else Should I Do or Know?

Ask yourself, “Why am I seeing the doctor? What is my main problem,

complaint, concern?†Although you’re anxious, afraid, depressed, and

you may not remember everything you want to ask, try not to come with a

long list. A long list will make the doctor anxious and depressed. List

the 3 or 4 main problems, complaints, or concerns in their order of

importance to you. If you’re satisfied the doctor has answered your 3 or

4 main problems, complaints, or concerns, and there are others you want

the doctor (and not his staff) to answer, make a return appointment. .

If you’re going to see the doctor because you think you have PD, say

exactly what prompted you to come. The following are examples: “I think

I have PD because I have a tremor.†“My wife or a friend or another doctor

said he or she thought I might have PD.†“I saw Muhammad Ali, or

J Fox, or Janet Reno, or the Pope on television and I think I have what

they have.â€

Bring a summary of your medical history including serious and chronic

illness, hospitalizations, surgeries, allergies, medications taken, family

and personal risks, occupational risks, lifestyle risks. If what you have

to talk about is difficult to discuss, practice how to bring it up. If

you expect bad news bring someone supportive with you.

On your first visit take a family member or friend. They will provide

you with emotional support and comfort. They’re more likely to be

objective and to hear what the specialist said rather than what you

thought he said. A word of caution: too many family members or friends

in the room, more than two, changes the nature of the visit If you have

small children get a baby sister: children may be frightened by being in a

doctor’s office, and they can cry and be disruptive.

Look for a courteous, caring, and polite staff. Look for a clean office.

Look for information on PD: books, pamphlets, and newsletters. Look for

nurse or an assistant to ask you to fill out a form regarding PD. Such a

form tells the specialist what he thinks is important. The questions

asked, the clarity with which they are asked, and the detail into which

they go into will give you an idea as to how the specialist thinks.

Waits of more than ½ hour are rarely justified. Before you visit ask if

the doctor goes to the hospital before seeing patients If he does this

may result in delays because of unforeseen emergencies If the doctor

goes to the hospital ask for an appointment on a day he does not go. If

you asked the doctor to “squeeze you inâ€, and he did, expect a delay. A

doctor who will see you as an emergency or as a favor will generally set a

time he can see you, or he will say, “I cannot fit you in but I can have

my associate or my colleague do so.â€

*****************************************************

A MESSAGE FROM ASK THE DOCTOR

----------------------------------

The NPF supports research in more than 60 PD Centers

throughout the world.

The NPF maintains an extensive website, and updates it

several times each week with articles from PD journals.

Latest News: http://www.parkinson.org/whatsnew.htm

Meetings : http://www.parkinson.org/shallwemeet.htm

PD Tests : http://www.parkinson.org/tests.htm

Support : http://www.parkinson.org/support.htm

All of these services, articles, news, and columns

such as " Ask The Doctor " and " Ask the Dietitian " are

free.

We need your support to continue providing these

valuable services. Please make an online donation at

https://www.parkinson.org/reqform.htm

*****************************************************

ASKTHEDOCTOR Digest for Sunday, September 08, 2002.

1. Shaking Up your Doctor: Getting More From Your Visit

2. Shaking Up Your Doctor Part 2 The examination

3. Shaking Up Your Doctor When You Need Treatment Pt 3

4. Shaking Up Your Doctor Part 4 When You Need Sinemet

5. leg cramps

6. another question

7. Re: Neurologist vs a Parkinson or MDS specialist

8. Re: Cabergoline

9. Re: askthedoctor digest: September 07, 2002

10. Re: askthedoctor digest: September 07, 2002

11. Disappointing DBS Surgery

12. swelling

13. much needed advice

14. donations

15. generic sinemet

16. Parkinson's Walk

17. toes

18. Re: Ask the Doctor Sept 8, 2002

19. Re: askthedoctor digest: September 04, 2002

20. Post-traumatic stress syndrome

21. Shingles and PD?

22. Re: askthedoctor digest: September 07, 2002

23. Re: Shaking Up your Doctor: Getting More From Your Visit

24. Spheramine

25. comtan & Requip

26. Re: askthedoctor digest: September 07, 2002

----------------------------------------------------------------------

Subject: Shaking Up your Doctor: Getting More From Your Visit

Date: Sun, 8 Sep 2002 09:26:41 -0400

X-Message-Number: 1

What to Expect from your Visit and How to Prepare

Shaking Up Your Doctor: Getting More From Your Visit

Abraham Lieberman MD, Medical Director, National Parkinson Foundation

Introduction

When you visit your doctor, it’s a successful if on leaving you know

what’s wrong and what the doctor can do to make you better. The meeting

is less satisfying but still successful if upon leaving you don’t know

what’s wrong but the doctor has told you, in words you can understand, why

he (or she) doesn’t know what’s wrong, but can tell you what to do to find

out

The visit’s a failure if on leaving you don’t know what’s wrong, the

doctor can’t tell you what’s wrong, and he can’t tell you how to find

out. The meeting’s a failure if on leaving you’re more anxious,

depressed, and confused then before. To minimize such failures, ever more

common is an age of shorter visits, harried doctors, and more complicated

problems, there are things you can do. Start by asking yourself why

you’re seeing the doctor. If you can’t say “why” in a few words, he might

not be able to help. He’s a doctor, not a mind reader.

When you visit your doctor you’re probably anxious or depressed thinking:

“What’s wrong? Is it bad? Will the doctor know? Can he help?”

You may be angry (whether you realize it or not), thinking: “Why me? Why

do I have to be sick? Why do I have to see this doctor? And why do I

have to pay for the privilege?”

Don’t let your anger get the best of you. Thus, if after being diagnosed,

you don’t agree with or like the diagnosis, don’t “shoot the messenger:”

He may be wrong and deserve being shot, but he may be right! And,

sometime soon, you may need him. Remember, you not he has the problem,

and you not he needs help.

In Parkinson disease (PD) there are specific situations for which you

should prepare.

(1) When you’re diagnosed (2) When you need treatment. (3) When you

need L-dopa (4) When you’re anxious (5) When you’re depressed (6) When

you have difficulty thinking (7) When you’re not sure it’s PD

1. When You’re Diagnosed

If you think you have PD, or your family doctor thinks you have PD and

refers you to a specialist, these are some common questions:

How Do I Know If The Specialist Is Good?

If your family doctor picked the specialist your doctor has probably

worked with him (or her), knows his credentials, knows his abilities, and

knows how he deals with people. However, in an era where HMO’s and

insurance companies limit your choices, this may not be so. Ask your

family doctor, or the specialist (or the specialist’s office manager):

Is The Specialist A Neurologist?

To practice as a neurologist a doctor, an MD (medical doctor) or a DO (a

doctor of osteopathy) must complete an accredited 3 year neurology

training program.

Is The Neurologist Board Certified?

Upon completion of their training program, a neurologist takes first a

written and then an oral examination in Neurology and Psychiatry. For a

neurologist 75% of the questions are on Neurology and 25% are on

Psychiatry. For a psychiatrist 75% of the questions are on Psychiatry and

25% are on Neurology. Neurologists and psychiatrists, upon successful

completion of their examination, are notified by the American Board of

Psychiatry and Neurology as being certified in either Neurology or

Psychiatry. Certification by the Board attests to, but doesn’t guarantee,

competence. Board certification (as evidenced by a diploma) is like a

Good Housekeeping Seal. There are exceptions. The best neurologist I

knew was not Board certified, he couldn’t bother with the test.

Is The Neurologist A Movement Disorder Specialist?

Within the field of Neurology there are accredited (by separate Boards)

sub-specialties. Movement Disorders (which includes PD) is a

sub-specialty but is not accredited by a separate Board. Movement

Disorders includes PD (approximately 80% of the practice), the PD-like

disorders (Multiple System Atrophy, Progressive Supranuclear Palsy,

Corticobasilar Degeneration), Dystonia, Essential Tremor, Huntington

disease, Restless Legs, Tardive Dyskinesia, and Disease. To be

called a Movement Disorder specialist a neurologist must take a 1-3 year

fellowship in a Movement Disorder program after finishing his Neurology

training. Usually, the Movement Disorder specialist will display a

certificate attesting to his completion of the fellowship. If you do not

see such a certificate, ask where the specialist trained in Movement

Disorders. There are excellent neurologists who treat PD and did not

complete Movement Disorder fellowships. They, like all most Movement

Disorder specialists, belong to the Movement Disorder Society (MDS). The

MDS is an excellent organization but it is not a Good Housekeeping seal of

approval. Any neurologist, or researcher can belong if they pay an

annual fee.

Is The Movement Disorder Specialist Famous? Is He (or She) a Thought

Leader?

Does his (or her) name come up when you search for PD articles on Google,

or Medline, or the National Library of Medicine, or Scirus.com? Is he

(or she) listed in the “Best Doctors in America?” Is he (or she) on

television whenever there’s a “breaking” story on PD? Is he (or she)

J Fox’s, or Janet Reno’s, or the Pope’s doctor?

The above reveals the specialist is familiar with PD and it’s nuances.

But he or she may not be right for you. He (or she) may be too busy doing

research, writing articles, giving speeches, or traveling to see you when

you want to see him. Or, when you do get an appointment you may not see

him but one of his fellows or associates. And while he may be available

for J Fox, or Janet Reno, or the Pope, he may not be available

for you.

What Else Should I Do or Know?

Ask yourself, “Why am I seeing the doctor? What is my main problem,

complaint, concern?” Although you’re anxious, afraid, depressed, and

you may not remember everything you want to ask, try not to come with a

long list. A long list will make the doctor anxious and depressed. List

the 3 or 4 main problems, complaints, or concerns in their order of

importance to you. If you’re satisfied the doctor has answered your 3 or

4 main problems, complaints, or concerns, and there are others you want

the doctor (and not his staff) to answer, make a return appointment. .

If you’re going to see the doctor because you think you have PD, say

exactly what prompted you to come. The following are examples: “I think

I have PD because I have a tremor.” “My wife or a friend or another doctor

said he or she thought I might have PD.” “I saw Muhammad Ali, or

J Fox, or Janet Reno, or the Pope on television and I think I have what

they have.”

Bring a summary of your medical history including serious and chronic

illness, hospitalizations, surgeries, allergies, medications taken, family

and personal risks, occupational risks, lifestyle risks. If what you have

to talk about is difficult to discuss, practice how to bring it up. If

you expect bad news bring someone supportive with you.

On your first visit take a family member or friend. They will provide

you with emotional support and comfort. They’re more likely to be

objective and to hear what the specialist said rather than what you

thought he said. A word of caution: too many family members or friends

in the room, more than two, changes the nature of the visit If you have

small children get a baby sister: children may be frightened by being in a

doctor’s office, and they can cry and be disruptive.

Look for a courteous, caring, and polite staff. Look for a clean office.

Look for information on PD: books, pamphlets, and newsletters. Look for

nurse or an assistant to ask you to fill out a form regarding PD. Such a

form tells the specialist what he thinks is important. The questions

asked, the clarity with which they are asked, and the detail into which

they go into will give you an idea as to how the specialist thinks.

Waits of more than ½ hour are rarely justified. Before you visit ask if

the doctor goes to the hospital before seeing patients If he does this

may result in delays because of unforeseen emergencies If the doctor

goes to the hospital ask for an appointment on a day he does not go. If

you asked the doctor to “squeeze you in”, and he did, expect a delay. A

doctor who will see you as an emergency or as a favor will generally set a

time he can see you, or he will say, “I cannot fit you in but I can have

my associate or my colleague do so.”

----------------------------------------------------------------------

Subject: Shaking Up Your Doctor Part 2 The examination

Date: Sun, 8 Sep 2002 09:28:16 -0400

X-Message-Number: 2

The Examination

Although the diagnosis of PD may be apparent as soon as you walk-in, the

doctor should stifle the urge to make such a quick diagnosis To begin

with, the diagnosis may be incorrect, or if correct, disturbing and not

appreciated by you or your family. At the beginning of the illness, you

and your family are frightened and anxious. You have probably sensed

something is wrong but have denied or dismissed the symptoms. Now you and

your family are guilty and angry for not seeking help sooner. If then a

stranger, the doctor, rapidly point out the obvious, it succeeds only in

reinforcing your guilt and redirecting the anger toward – the doctor.

A recurrent theme of patients seeking another opinion is that the previous

doctor: “Didn’t

examine me or listen to me.” For a satisfactory doctor-patient

relationship to be established, the doctor must appear caring and

involved. He should take a careful history, conduct an examination, and

spending time with you and your family. After such a relationship has

been established, his diagnosis is more likely to be accepted and his

recommendations followed.

During the history, you may make a remark that confirms the diagnosis.

Statements such as the following are almost diagnostic of PD: “My hand

only begins to shake when I sit down” or

“My handwriting has gotten so small that the bank won’t cash my check”

It may become apparent to the doctor that you are not aware of any

difficulty either because of denial or because of your inability to sense

the difficulty. Although tremor and difficulty moving are prominent

symptoms in PD, there may also be perceptual, behavioral, and

personality changes that can interfere with your ability to recognize

your difficulties.

It may become apparent during the examination there is marital discord. A

spouse who constantly answers for you without being asked and makes

remarks such as: “He walks bent down like an ape” will not be the

sympathetic care-giver necessary for successful management. Marital

discord should be addressed. This is best done in a subsequent visit

after the doctor has a better understanding of your family dynamics.

It’s helpful if the doctor asks whether any family member or friend has

PD. If you have direct knowledge of someone who became bed-ridden

because of PD you will need reassurance that PD will not similarly affect

him.

The activities of daily living (ADL) of the Unified Parkinson Disease

Rating Scale (UPDRS) include speech, salivation, swallowing, handwriting,

cutting food and handling utensils, dressing, hygiene, turning in bed,

falling, freezing, walking, tremor, and sensory symptoms. The doctor or

his assistant’s review of your daily activities should not be reviewed

the way you review a laundry list. Careful and imaginative questioning is

always helpful.

You should be asked if there has been a change in your voice. Voice

implies difficulty with the mechanical rather than the linguistic aspects

of speech. An answer such as “yes, my voice seems to fade out at times

and people are always asking me to speak up” is almost diagnostic of PD.

You should be asked if you have recently noticed saliva escaping from the

corner of your mouth. This is a private symptom often apparent only to

you. The question usually elicits a reply such as “Yes, my pillow is wet

at night, but I didn’t mention it.” Although drooling may be a relatively

minor complaint, the symptom in the minds of many patients and families is

associated with dementia. You should be reassured that your drooling does

not mean you will “loose your mind.” Prominent swallowing difficulty

early in PD disease usually implies a PD-like disorder. Difficulty with

handwriting, cutting food, handling utensils, dressing, and hygiene to

some extent depends on whether your dominant hand is affected. If you

appear to be unaware of any difficulty with these tasks, the doctor may

ask you if your are slower in performing them. This question usually

elicits a response such as “Yes, but that isn’t anything, is it?”

It’s helpful for the doctor to obtain specimens of your handwriting and

compare them with past samples. This may show when your disease actually

began. In some people it’s reassuring to know they had PD for several

years before they were aware of their symptoms. This implies their PD is

progressing more slowly than they thought.

If your non-dominant hand is primarily affected, the questions should be

directed so as to include those activities you usually performed with that

hand. Thus if you’re right-handed with left-sided PD, you may be asked

how you buttons your shirt sleeves on your right side or how you wash your

right shoulder.

Patients rarely associate difficulty with turning in bed with a disease,

do not mention it, and are surprised when asked. Such questions provide

you with insight into the scope of your disease by making you realize that

symptoms as different as tremor, drooling, and difficulty turning in bed

are part of the same process.

The diagnosis of PD is made after taking a history (such as that

described above) and by performing an examination in the office. A

Movement Disorder specialist should be able to diagnose PD and be correct

85% of the time. Sometimes, because of unusual symptoms or because of

unusual finding on the examination the doctor may order an MRI-scan. An

MRI-scan does not diagnose PD. An MRI-scan can “rule-out” other

conditions that MAY mimic PD: hydrocephalus, small strokes, tumors.

Rarely a PET-scan (Positron Emission Tomography) using a special isotope

called fluro-dopa or a SPECT-scan (Single Photon Emission Computed

Tomography) using a special isotope may be necessary to confirm the

diagnosis. These tests are not available everywhere, require special

expertise in interpreting them, and are supplements not substitutes for an

examination by a Movement Disorder specialist.

The Stages of Parkinson Disease

In 1967, before L-dopa or levodopa, Sinemet, or the dopamine agonists, Drs

Margaret Hoehn and Melvin Yahr began rating people with PD on a 6-point

scale: 0, 1, 2, 3, 4, 5. In 1967, the Scale reflected the underlying

state of their PD. Sinemet and the agonists changed PD, symptoms

receded and became masked or hidden. Sinemet, however, doesn’t halt the

progression of PD. Thus, when you are rated, the rating reflects not

your underlying PD, but your outward appearance. To rate the underlying

PD state, Sinemet must be stopped for at least one month. For most

people this is impossible.

After 2 – 5 years many PD people fluctuate: your day consists of being

" ON " (Sinemet working) followed by being " OFF " (Sinemet not working). If

this is so you should be rated in both your " ON " and " OFF " state. The

Hoehn and Yahr Scale rates : mobility. It does not rate anxiety,

aberrant behavior, depression, dyskinesia, memory loss, difficulty

thinking, or difficulty swallowing. In many people with PD these symptoms

overshadow mobility. The Hoehn and Yahr Scale is NOT a Cancer Rating

Scale: it is not a guide to treatment and outlook. However, despite its

limits, the Scale has endured, attesting to its usefulness.

The Hoehn and Yahr Scale

You should note whether Sinemet is working, whether you are " ON " Or

whether Sinemet is NOT working, whether you are “OFF” The doctor will

select the Stage that best describes you:

0: No visible symptoms of PD.

1: Symptoms of PD confined to One-side of the body.

2: Symptoms on Both-sides of the body, NO difficulty walking.

3: Symptoms on Both-sides of the body, minimal difficulty walking.

4: Symptoms on Both-sides of the body, moderate difficulty walking.

5: Symptoms on Both-sides of the body, unable to walk.

The Hoehn and Yahr Scale, your handwriting, or symptoms such as

progressive curvature of the spine may be used to track the progression of

PD

----------------------------------------------------------------------

Subject: Shaking Up Your Doctor When You Need Treatment Pt 3

Date: Sun, 8 Sep 2002 09:34:05 -0400

X-Message-Number: 3

When You Need Treatment

Although our ideas are changing, the prevailing opinion today is that if

you have symptoms of PD and can live with the symptoms it’s best not to be

treated. However, data is accumulating about drugs that slow the rate of

progression of PD. Such drugs include the dopamine agonists Mirapex and

Requip and Co-enzyme Q-10. At present there is disagreement as to whether

the benefits in slowing the rate of progression of PD are so clear-cut

that all newly diagnosed PD patients should be started on Mirapex and

Requip or Co-enzyme Q-10 in high doses (1200 mg per day).

There’s agreement that when symptoms interfere with daily life treatment

should be started. The disagreement centers on when symptoms are severe

enough to interfere with daily life. The tremor that does not bother you

may be a major embarrassment to your friend. The common reasons people

with PD seek treatment are:

(1) Increasing tremor. Your tremor may interfere with your daily

activities or may be a major embarrassment to you socially or at work.

(2.) Slowness of movement. You may become so slow in your activities that

this imperils your work or makes it impossible for you to go without

help.

(3). Difficulty walking. Not being able to keep up with your partner. Or

an increased tendency to fall.

(4) Painful stiffness or rigidity of a major joint: the shoulder or hip.

Cramping of your arms or legs.

Dopamine Agonists as First Treatment

For people 60 years and younger who are diagnosed with PD and who need

treatment the first line drugs are the dopamine agonists, Mirapex and

Requip and Permax PD results from a loss of cells deep in the brain in a

region called the substantia nigra.

The cells in the substantia nigra are darkly pigmented and contain

dopamine. Indeed their dark pigment represents condensed molecules of

dopamine

The cells in the substantia nigra project to a region of the brain

called the striatum (so named because the region is striated or striped)

L-dopa or levodopa, a naturally occurring amino acid, similar to the amino

acid tyrosine, is changed inside the cells of the substantia nigra to

dopamine which is then transported upward through long processes of the

cells called axons

In the striatum dopamine is released and taken up by cells in the

striatum. The dopamine is released onto dopamine specialized receptors.

There are 2 kinds of receptors: the DA-1 and DA-2. The agonists stimulate

DA-2. Dopamine stimulates DA-1 and DA-2. This may make dopamine more

powerful but it also may result in dyskinesia. Drugs such as Requip,

Mirapex and Permax, like dopamine, can attach themselves to the receptors

and thus mimic the actions of dopamine. They are called dopamine mimetic

or dopamine agonists. A dopamine antagonist is a drug that blocks the

dopamine receptor (or antagonizes) it while an agonist is the opposite,

hence the name.

There is evidence that Mirapex and Requip, in addition to improving the

symptoms of PD, may slow the progression of PD. As PD progresses, the

cells in the substantia nigra drop-out and the remaining cells, like

factories, must work harder, to “pump” dopamine to the striatum. The

agonists mimic the actions of dopamine in the striatum: they do not need

the remaining dopamine cells to “pump” dopamine to the striatum. In order

for you and your doctor to make a logical decision as to whether this

information warrants a change in your treatment requires an understanding

of how the studies were done. Several questions will jump to mind.

Question 1. I was recently diagnosed with PD. I and my doctor do not

feel my symptoms are sufficiently troubling to warrant treatment. In

light of the new studies should I be placed on Mirapex or Requip even

though my symptoms are not sufficiently troubling to warrant treatment?

In the first study patients whose symptoms were sufficiently troubling to

require treatment were randomly and blindly assigned to either Mirapex or

Sinemet. The measure of PD progression used an imaging technique called

SPECT or single photon emission computed tomography. The SPECT study uses

an isotope abbreviated CIT that labels dopamine transporters. The

dopamine transporters are located on axons of dopamine cells. The axons

of these cells project to the striatum. SPECT measures the

radio-activity of the striatum by lighting up the dopamine transporters.

The fewer cells in the substantia nigra the less the distribution and

intensity of radio-activity.

In the second study patients whose symptoms were sufficiently troubling to

require treatment were randomly and blindly assigned to either Requip or

Sinemet. The measure of PD progression used an imaging technique called

PET or positron emission tomography. PET uses an isotope called

fluro-dopa. Fluro-dopa is transported up the substantia nigra axons into

the striatum. Here, fluro-dopa is taken up by the dopamine receptors on

nerve cells of the striatum. PET, like SPECT, measures the radio-activity

of the striatum. The fewer substantia nigra cells the less the

distribution and intensity of radio-activity. As, at present, there are

no direct comparisons between SPECT and PET, it cannot be said which is a

more accurate marker of the remaining substantia nigra cells. Both

studies compared the rate of progression of PD in a group of newly

diagnosed PD patients whose symptoms were sufficiently troubling to

require treatment. Although it’s reasonable to believe newly diagnosed

PD whose symptoms are NOT sufficiently troubling to warrant treatment will

also benefit, the potential benefit in slowing the disease progression

must be weighed against the side effects of Mirapex or Requip. This

issue must be discussed with your doctor.

Question 2. I have PD and my symptoms were sufficiently troubling to

start me on Sinemet. In light of the new data should I be changed to, or

should I add Mirapex or Requip to Sinemet?

In addition to the two recent studies, other studies were done comparing

Mirapex, Requip and Sinemet. In a 4 year study comparing Mirapex and

Sinemet, one separate from the SPECT study, 301 newly diagnosed PD

patients whose symptoms required treatment were randomly and blindly

assigned to treatment with either Mirapex or Sinemet. After 3 months

investigators were, if needed, allowed to add Sinemet to all patients.

After 4 years 25% of patients initially assigned to Mirapex had

dyskinesia (but only after supplemental Sinemet was added) versus 54% of

patients assigned to Sinemet. 54% of patients assigned to Mirapex had

“wearing off” versus 71% of patients assigned to Sinemet.

In a 5 year randomized trial of Requip versus Sinemet in 268 recently

diagnosed PD patients reported in the New England Journal of Medicine 2000

(volume 343, page 1484) whose symptoms required treatment and were

randomly and blindly assigned to treatment with either Requip and Sinemet.

After several months investigators were, if needed, allowed to add

Sinemet to all patients. After 5 years 20% of patients initially assigned

to Requip had dyskinesia (but only after Sinemet was added to Requip)

versus 45% of patients initially assigned to Sinemet. The improvement of

symptoms was comparable in patients initially assigned to Sinemet or

Requip. The dose of Requip was 16.5 mg per day. The dose of Sinemet was

427 mg per day.

Because of differences in the way patients were assigned to treatment in

the studies on Mirapex and Requip the results of the two studies cannot be

compared. Of the patients completing both studies and not dropping out

because of side effects or failure to comply with the terms of the study,

approximately 30% remained on Requip without Sinemet for 4 - 5 years.

Question 3 repeated. I have PD and my symptoms were sufficiently troubling

to start me

on Sinemet. In light of the new data should I be changed to, or should

I add Mirapex or Requip to Sinemet?

What will be done will be determined, in part, by your age. If you’re

60 years or less, most neurologists, before the new studies, started you

on an agonist because of the decreased likelihood of an agonist

precipitating “wearing-off”, “on-off”, or dyskinesia. With the new

studies, this trend will be accelerated.

If you’re 70 years or older, most neurologists will start you on

Sinemet. This is because

in 30% of PD patients 70 years or older, PD becomes associated with a

dementia. The dementia evolves slowly. Although the symptoms of dementia

are obvious when they appear, before they appear the underlying dementia

is “silent” and difficult to recognize. Often the first symptom of such a

“silent” dementia is the appearance of a psychosis: hallucinations,

delusions, agitation. The psychosis is often precipitated by drugs and the

agonists are more likely than Sinemet to do this. Because of this the

treatment of patients 70 years or older may not change because the desire

to slow disease progression may be less critical at age 70 years than the

fear of precipitating a psychosis, unmasking, temporarily, an underlying

dementia..

If you’re 60 - 69 years in light of the new studies, many neurologists

will start you

on Mirapex or Requip. Many will start you on Sinemet. In addition, if

you’re on Sinemet and having increased symptoms of PD, most neurologists

will now add Mirapex or Requip rather than increase Sinemet. Mirapex and

Requip will be added as much for their effect on the symptoms of PD as for

their effect on slowing disease progression. Although the possibility of

precipitating a psychosis, unmasking, temporarily, an underlying dementia

is less at age 60 - 69 than at age 70 years or older, this possibility

remains. In these patients the judgment of the neurologist as to which

drug to use will be critical.

----------------------------------------------------------------------

Subject: Shaking Up Your Doctor Part 4 When You Need Sinemet

Date: Sun, 8 Sep 2002 09:37:04 -0400

X-Message-Number: 4

When You Need L-Dopa (Levodopa, Sinemet)

Sinemet, a combination of two drugs: carbidopa plus levodopa, remains the

most potent drug for the treatment of PD. As people with PD live longer

(because treatment delays their becoming bed-bound) the side-effects of

treatment seem to over-shadow the benefits. When your doctor suggests

you start Sinemet, your first thought may be: “Isn’t Sinemet dangerous?

Isn’t it toxic?” Sinemet like any drug may be toxic in that it may have

side-effects. However, it is not toxic in the sense that it destroys or

poisons cells and makes PD worse. PD progresses, gets worse, because of

the underlying disease process, not because of L-dopa or Sinemet.

Next ask yourself whether you think Sinemet is toxic or dangerous or

whether you’re afraid to accept the fact that your PD has progressed and

you need additional treatment? It’s helpful and revealing but painful to

remind people with PD about the impact Sinemet has had on the main

symptoms of PD: tremor, rigidity, slowness of movement, and difficulty

walking. Before Sinemet more people with PD became totally bed-bound

(Stage 4 or 5 PD) in a shorter period of time than now.

Parkinson Disease Before Sinemet

In 1967, before L-dopa, before Sinemet, people diagnosed with PD lived on

average, 5 - 15 years from diagnosis to death. Death came as follows:

(1) People with PD, 5-15 years after being diagnosed became bed-bound.

Some developed difficulty swallowing and aspirated or swallowed food into

the lungs. This resulted in an aspiration pneumonia. The pneumonia

challenged the defenses in the lungs while the rigidity of PD restricted

the movement of the chest wall muscles, the muscles necessary to overcome

the pneumonia. As the pneumonia spread, it overwhelmed the body’s

defenses. Or the infection spread from the lungs to the blood and people

died of sepsis (blood poisoning).

(2) People with PD, 5-15 years after being diagnosed became bed-bound.

Unless they were turned in bed every hour, their skin broke down, they

developed pressure sores, the sores became infected, and the infection

spread. The person debilitated from PD lacked the will and the ability

to fight the infection and died.

The introduction first of L-dopa, then Sinemet changed everything.

People diagnosed with PD now live longer. Sinemet doesn’t “cure” PD, but

it postpones the day when people become bed-bound, and this in turn

postpones the complications of being bed-bound. Would any of us trade

these extra years for the side-effects of Sinemet?

As PD advances, as more cells are lost, the production and delivery of

dopamine from the cell “factories” in the nigra becomes more erratic,

less continuous, sporadic. This is related to continued loss of cell

“factories” in the nigra and to levodopa’s short duration of action.

Together they may be responsible for the “wearing-off”, “fading-out”, or

“turning-off” of an individual dose of Sinemet. To make-up for the

more erratic, less continuous delivery of dopamine from the cell

“factories” in the nigra, the receptors for dopamine on the cells in the

striatum become super-sensitive. Initially, the dose of Sinemet required

to relieve symptoms is less than that required to cause dyskinesia. As

PD progresses, as the delivery of levodopa becomes more erratic, less

continuous, as striatal cells become super-sensitive, the dose of Sinemet

required to relieve symptoms approaches that required to cause

dyskinesia.

Making Sinemet Last Longer

When Sinemet’s short duration of action was recognized and related, in

part, to “wearing-off”, “fading-out” or “turning-off” of individual doses

of Sinemet, attempts were made to prolong it’s action and make it’s

delivery to the brain less erratic, more continuous. By providing the

over-worked cell “factories” in the nigra with a more continuous delivery

of levodopa, the “factories”, although fewer in number, are able to

produce dopamine more continuously, similar to the way they produced

dopamine early in PD, during the Sinemet “honeymoon.”

Sinemet Controlled Release (Sinemet CR)

To overcome Sinemet’s short duration of action, Sinemet was embedded in a

specific matrix that delayed it’s absorption in the stomach and resulted

in a more prolonged delivery of an individual dose of Sinemet to the

brain. This form of Sinemet, Sinemet is called Sinemet controlled

release (Sinemet-CR). Sinemet-CR is available in two ratios: Sinemet-CR

50/200 which contains 50 mg of carbidopa and 200 mg of levodopa, and

Sinemet-CR 25/100 which contains 25 mg of carbidopa and 100 mg of

levodopa. Sinemet-CR had a modest effect on “wearing-off”, “fading out”,

and “turning-off” of an individual dose of Sinemet. Although the matrix

in which Sinemet was embedded delayed and prolonged the delivery of

levodopa from the stomach, the delivery remained erratic and was not

continuous. More-over, people who were on regular Sinemet complained

upon being changed to Sinemet-CR, that Sinemet-CR didn’t kick-in, and

often, when they were “off”, Sinemet-CR, unlike regular Sinemet, didn’t

turn them-on. This was related to the fact that regular Sinemet results

in a high pulse or peak of levodopa 30 - 60 minutes after taking an

individual dose. It is this high pulse or peak that results in the

feeling of Sinemet kicking-in and turning people on. The absence of a

high pulse or peak limited Sinemet-CR’s usefulness. In some people, the

benefits of Sinemet-CR could be realized, in part, by taking regular

Sinemet together with Sinemet-CR. The limitation in this approach were

that two separate tablets, regular Sinemet and Sinemet-CR, although

swallowed together were not absorbed together from the stomach, while

the high dose of levodopa that resulted from taking Sinemet and

Sinemet-CR together resulted in dyskinesia.

Selegiline or Eldepryl

Levodopa, the active part of Sinemet, is “broken-down” metabolized by

3 separate enzymes: dopa decarboxylase, COMT, and MAO-B. Carbidopa by

blocking dopa decarboxylase in the stomach and liver allows more

levodopa to leave the stomach and enter the brain. However, although

more levodopa leaves the stomach, it’s delivery to the brain remains

erratic and not continuous. Carbidopa decreased the nausea associated

with having too much dopamine produced in the stomach, carbdiopa allowed

more people to take less levodopa, but carbidopa did not result in less

“wearing off” and it did not result in less dyskinesia. MAO-B is an

enzyme present inside dopamine cells in the brain. By blocking or

inhibiting MAO-B, the dopamine formed from levodopa remains in place

longer. Eldepryl blocks or inhibits MAO-B.

Eldepryl, 5 mg twice a day, when added to Sinemet has a modest effect

on prolonging Sinemet ‘s duration of action and this in turn, has a mild

to modest effect on decreasing the “wearing off” of an individual dose of

Sinemet. In the late 1980s and early 1990s there was great interest in

Eldepryl because it was believed, incorrectly, that Eldepryl slowed the

progression of PD.

COMT is the most potent of the enzymes that break-down levodopa, and

blocking (inhibiting) COMT has the greatest effect on Sinemet:

prolonging it’s duration of action and resulting is a less erratic and

more continuous delivery of levodopa to the brain. COMT is present in

the stomach, liver, kidney, and brain. COMT also circulates in the blood.

Comtan which blocks or inhibits COMT has emerged as a safe and widely used

drug..

When Sinemet is given without Comtan most of the levodopa is changed by

stomach, liver, and circulating COMT to 3 methoxy-dopa (or 3-OMD).

3-OMD has no effect on PD, it acts as a reservoir or “sink” for levodopa.

Such a “sink” delays the action of Sinemet and results in a more

erratic and less continuous delivery of levodopa to the brain. Comtan by

inhibiting COMT outside the brain results in a more sustained level of

levodopa in the blood. Unlike Sinemet-CR, the peak effect of levodopa is

unchanged, so people who take Comtan with regular Sinemet feel themselves

“turning-on” as Sinemet “kicks-in.”

The more sustained, continuous, level of levodopa in the blood results and

in the brain results in a decrease in symptoms such as “wearing-off.”

This in turn results in the person experiencing more “on” time, more time

when his symptoms of PD are reduced or absent. For the most benefit

Comtan should be started early, when symptoms of “wearing-off” begin.

This could be when: (1) You’re thinking of switching from regular

Sinemet 3 times a day to regular Sinemet 4 times a day. (2) You’re

thinking of switching from Sinemet-CR 2 or 3 times a day to Sinemet-CR 3

or 4 times a day. (3)You wake-up in the morning and you immediately need

Sinemet (4) Your dose of Sinemet does not “kick-in.” (5) You need an

extra dose of Sinemet before you go out at night.

Comtan (200 mg) should be given with each dose of Sinemet up to 8 times

per day. Comtan can be used with regular Sinemet or Sinemet-CR. The dose

of Comtan (200 mg) does not change regardless of the number of Sinemet

tablets in each dose. Comtan when added to Sinemet when increase the side

effects of Sinemet such as dyskinesia, confusion, delusions and

hallucinations. If side-effects occur the simplest way to treat them is

to eliminate one or more of doses of Sinemet.

----------------------------------------------------------------------

Subject: leg cramps

Date: Sat, 7 Sep 2002 21:11:21 -0400

X-Message-Number: 5

question

dear dr.

are leg camps associated with pd? How can they be dealt with? My husband

has them in bed, when relaxed... He hadn't had any for many years...

thanks for your help. calif. partner...

answer

yes

please read the following

http://parkinson.org/parkpain.htm

----------------------------------------------------------------------

Subject: another question

Date: Sat, 7 Sep 2002 21:15:14 -0400

X-Message-Number: 6

questions

what is your opinion about ordering meds from canada, meds are sooo....

expensive here in US... thanks

answer

if you can get the meds you want at a cheaper price it's all to your

benefit long term remember the research that makes these drugs

available at all is done in the US prices are higher here because all

of us, in effect, subsidize Canada

abe lieberman

----------------------------------------------------------------------

Subject: Re: Neurologist vs a Parkinson or MDS specialist

Date: Sat, 7 Sep 2002 21:21:59 EDT

X-Message-Number: 7

question

I read with special interest the note from in NM who was looking for a

PD specialist. We too live in NM and I am the caregiver for my 72 yr. old

husband who has " advanced " LBD Parkinsonism. We feel we have a good

neurologist but I have often wondered if my husband could/would benefit

anything from seeing a PD specialist or going to Mayo or the parkinsons

institute in Phoenix?? Know this is a difficult question to answer - He is

currently taking 24 mg. of Requip a day, and is even having difficulty

walking w/ a walker, sleeps a lot etc.. I know things reach a point where

there really isn't much else that can be done but want to make sure we have

left " no stones unturned " that might help.

Any comments are greatly appreciated. THANKS

AEWID@...

answer

you can always benefit from another opinion by a good doctor

abe lieberman

----------------------------------------------------------------------

Subject: Re: Cabergoline

Date: Sun, 8 Sep 2002 00:17:28 -0400

X-Message-Number: 8

question

Thank you for your prompt answer Dr. Lieberman. Would you say then that =

even if cabergoline has a longer half life it does not really make a diff=

erence? Would it be the same as if taking Mirapex or Requip? Thank you.

answer

i did the original studies on cabergoline in the united states it is

a good drug

i did the original studies on mirapex and requip in the united states

they are better drugs

abe lieberman

----------------------------------------------------------------------

Subject: Re: askthedoctor digest: September 07, 2002

Date: Sun, 8 Sep 2002 08:35:48 EDT

X-Message-Number: 9

question

Dear Dr. Leiberman, I did what you told me to do and there was no website

for it. Do you happen to know a p.d. specialist in the Pgh area? I hit

http://wwwparkinson.org/docgetmap.HTM and nothing happened. Gloria

answer

check this with your provider if you have aol amoung providers you will not be

able to get the map

B. Jozefczyk, MD. MDS

2276 Sidgefield Lane

Pittsburgh, PA 15241

4126924600

Baser, MD.

4919 Ashbaugh Road

Pittsburgh, PA 15568

Hassan Hassouri, MD.

University of Pittsburgh

1 Alleghany Square

Pittsburgh, PA 15212

4123214603

Y. , MD., Zigmond, MD.

University of Pittsburgh- NPF Center of Excellence

3471 Fifth Ave

Ste 810

Pittsburgh, PA 15213

abe lieberman

----------------------------------------------------------------------

Subject: Re: askthedoctor digest: September 07, 2002

Date: Sun, 8 Sep 2002 08:17:38 EDT

X-Message-Number: 10

question

Could you please give me the name of a good pd neurologist in

Binghamton,New York area .

Thank you so much for being

here.

answer

i would go to either albany or syracuse

http://www.parkinson.org/docgetmap.htm

dr factor in albany

the university hospital in syracuse

abe lieberman

----------------------------------------------------------------------

Subject: Disappointing DBS Surgery

Date: Sun, 8 Sep 2002 08:19:37 -0400

X-Message-Number: 11

question

My 72 yr. old mother was diagnosed with PD 8 yrs. ago. Her symptoms were

not very severe, consisting almost exclusively of tremors and eventually

some joint stiffness. As the tremors were becoming more bothersome, she

decided to go through with one-sided DBS surgery in April, 2002. The

surgeon in Sweden, where she had it done, was the first to perform this

procedure over there and had since done over 200 DBS operations before my

mother.

Her surgery recovery was complicated by a staph infection that had gone

undetected. Immediately after the procedure, she was hospitalized with

urinary tract and blood infection. As a result adjustments were delayed.

Having recovered from the infections and having had several adjustments

since the surgery, things are worse than they were before all of this. The

tremors are worse than ever, she has developed depression, and is overly

sensitive to heat and water. She was trying to take a hot bath but felt so

bad that she is now opting for cool showers.

My question is if these symptoms are just a function of the adjustments

and might be eliminated through correction? Or is she just part of the

small percentage of surgeries that are not considered successful? We had

great hopes for this surgery, now we would at least like to be able to get

her back to where she was! Any suggestions and information would be

greatly appreciated. Thank you.

Ann-Mari Grisham

answer

inherent in any surgery are complications these occur at the best places

with stringent precautions they are more common in older people whether the

surgery failed in your mother because of the mulitiple infections because the

adjustments were not made or because the electrode is not in its proper place i

cannot say my recommendation is that

if she lives in the US she go to a place in the US with a large experience in

DBS such as the cleveland clinic in cleveland or the university of kansas

abe lieberman

----------------------------------------------------------------------

Subject: swelling

Date: Sun, 8 Sep 2002 13:09:25 -0700

X-Message-Number: 12

question

dear dr. leibermann=20

i was diagnosed with parkinsons in may =

this year at present i am taking 6 mg requip 2mgx 3times a day. i also =

have highbloodpressure and reflux and hegh cholestrol level and i am =

taking 20mg enalapril 10mg losec 2.5 mg bendrofluazide and 20mg of =

simvastatin each 1 per day. the parkinsons has affected me down theright =

side and recently i have been experiencing swelling in my right foot and =

hand quite severe in my right foot enough to cause quite severe =

discomfort in my foot do u think this is caused by my parkinsons or =

something else . i would be grateful forany help thanking u in advance . =

i think u do a wonderful job and god bless u to keep up the good work =

doreen

answer

the agonists mirapex requip and permax can cause such swelling

even beginning on one side more than the other

please read the following

http://www.parkinson.org/dopamine.htm

----------------------------------------------------------------------

Subject: much needed advice

Date: Sun, 8 Sep 2002 09:00:53 -0400

X-Message-Number: 13

question

My father takes sinemet 50/200 every three hours for a total of 7 doses a

day. He is also taking Requip and up to 2.5 X 3. He was hospitalized due

to sudden nighttime incontinence. The urologist started him on

Detrol(which helped with the incontinence) and although his prostate is

fine he placed him on Flowmax because my dad is up 6 to 9 times during the

night to urintate!! They also started him on Trazadone as high at 150mg,

in the hospital, with the thought that this would help him get a good

nights sleep... but he still wakes to go to the bathroom.

Many times it is just an urge to go, but his is awakened each time all the

same. My Mom has spoken with his current Neurologist(not a specialist in

Parkinson's) and she says that she feels that the DBS will help, but he

does not have an appointment with Dr. Pahwa at KU Med until Oct. 8 and has

been told that if he qualifies for the surgery it would not be until

around Jan. that it could be done.

Is there anything you can suggest? (manipualtion of current meds, new

meds, questions to ask the doctor, anything???) January is a long time off

and although, it seems like such a minor thing to most, Dad is now to

unsteady during the night to go to the bathroom alone, so Mom is having to

go with him. These frequent trips are REALLY taking a toll on her. They

are both in their 70's and they are not getting much sleep at all. If

something happens to her I do not know what we will do. I help as much as

I can, but have two little ones so taking the " night shift " is a problem.

Thank you so very much!!!

answer

the dbs may improve his mobility it will not help with the bladder problem

the control of the bladder will not be affected by the dbs

be certain you have clarified this with the doctors

without seeing and examining your father i cannot answer specifically

the simplest thing is to get a bed side commode

and have someone other than your mother stay with your father on some nights to

give your mother a rest these are the most helpful things

you can do more helpful than trying to manipulate drugs which have

already been artfully manipulated

abe lieberman

----------------------------------------------------------------------

Subject: donations

Date: Sun, 08 Sep 2002 09:13:29 -0400

X-Message-Number: 14

question

We presently donate to a charitable organization that automatically

deducts $25 per month directly from our checking account. Now that 2 of

the large PD organizations are merging, we want to be even more

supportive financially of them, and wonder if there is a way to have

that type of deduction taken automatically. I would imagine that many

people would donate if that arrangement were available. We can't afford

more than that, but if every PD family donated $25 per month, surely

that would be a great help. What do you think?

answer

if 10% of the 25,000 people who each day use ASK THE DOCTOR or ASK THE

SURGEON or ASK THE DIETITIAN gave us $25 a month we would have

62,500 a month our website gets less than a tenth of that

if we had this for one year we would have 750,000 per year and we

could almost double our peer reviewed research grants for innovative

research

would that this happened

we would come up with a plan to make it easier for you to donate

monthly to THE PARKINSON FOUNDATION

abe lieberman

----------------------------------------------------------------------

Subject: generic sinemet

Date: Sun, 8 Sep 2002 18:32:08 -0400

X-Message-Number: 15

Dear Dr. Lieberman:

My wife (PWP) was recently hospitalized under care of an internist. When

the nurse brought the Sinemet CR 50/200 the first time, I noticed it was

slightly different. The nurse said it was generic (from the hospital

pharmacy). I stated firmly that our patient’s neurologist had instructed

us not to use generic Sinemet. We used our own Sinemet from that point

on.

The tablet in question is a unit dose in blister package, marked:

“PKG. BY UDL, ROCKFORD, IL. " The tablet is a gray color. It may be all

right for some patients, but not for my wife. Checking other websites,

UDL has had three recalls of other med products in the past twenty months.

We Caregivers have to stay alert.

----------------------------------------------------------------------

Subject: Parkinson's Walk

Date: Sun, 8 Sep 2002 10:14:04 EDT

X-Message-Number: 16

Hi Dr. Lieberman,

Is there a place where I can post this?

Hello Readers,

I've been writing to Dr. Lieberman for a couple of months, ever since my

mother was diagnosed with Parkinson's. We all know how devastating this

disease is.

I will be walking in Long Island, NY in a Parkinson's fundraiser on Saturday,

Sept 28 of this year. My fundraising is in honor of my mother, and for all

the afflicted, incredible loved ones for their strength and perserverance and

heart in dealing with Parkinson's . The money will be going toward

Parkinson's research. Anybody who would like to make a pledge to the cause

can write a check out to:

American Parkinson Disease Association, Inc. (please use my name on the memo

of your check so I can have it tallied in my pledge account) and send it

directly to the foundation at :

ADPA Information and Referral Center

C/o NYCOM/NYIT

PO Box 8000

Old Westbury, NY 11568.

Any contribution would be GREATLY appreciated. Anybody who is interested in

mailing it directly to me, or has any questions, please email me at

Jsavitzky@....

Thanks,

Jill Savitzky

----------------------------------------------------------------------

Subject: toes

Date: Sun, 8 Sep 2002 10:40:27 EDT

X-Message-Number: 17

question

i am a patient with newly diagonosed p.d.

sometime my toes go under and have a hard time trying to straightenening

them ,is this normal with pd.

thank you

sandie

answer

yes

this is usually a symptom of under medication

abe lieberman

----------------------------------------------------------------------

Subject: Re: Ask the Doctor Sept 8, 2002

Date: Sun, 8 Sep 2002 09:45:44 -0500

X-Message-Number: 18

Breeden M.D. of Farmington,NM is the first and finest neurologist

I've seen in my twenty years with parkinsons.

----------------------------------------------------------------------

Subject: Re: askthedoctor digest: September 04, 2002

Date: Sun, 8 Sep 2002 12:33:22 EDT

X-Message-Number: 19

question

Dear DR Lieberman,

Would you please give me the name of a good neurologist in the Muskegon or

Grand Rapids, Michigan area.

Thank you, Lorraine

answer

please click onto the following

http://www.parkinson.org/docgetmap.htm

----------------------------------------------------------------------

Subject: Post-traumatic stress syndrome

Date: Sun, 8 Sep 2002 13:38:25 -0400

X-Message-Number: 20

question

Is there a causal link between pst-traumatic stress syndrome and

Parkinson's Disease?

answer

to my knowledge there is not

abe lieberman

----------------------------------------------------------------------

Subject: Shingles and PD?

Date: Sun, 8 Sep 2002 11:10:59 -0700

X-Message-Number: 21

question

Had shingles about 5 years ago, dx with PD 3 years ago. Felt since

having the shingles, the PD symptoms started. Has there been any

research into the virus of shingles causing PD? Read your Digest every

day and thank you for being there for all of us.

answer

as we do not know the cause of pd a viral infection remains an option however

at present there is no evidence that infection with shingles or chicken pox

(it's the same virus) is a cause of pd

abe lieberman

mswer

----------------------------------------------------------------------

Subject: Re: askthedoctor digest: September 07, 2002

Date: Sun, 8 Sep 2002 15:45:27 -0400

X-Message-Number: 22

question

We also live in the Binghamton area, and are considering Syracuse, Albany

and Rochester. We have been leaning toward Rochester because there is a

PD Center of Excellence there. In your Opinion, would that be beneficial?

answer

the center in rochester is one of the best in the world

abe lieberman

----------------------------------------------------------------------

Subject: Re: Shaking Up your Doctor: Getting More From Your Visit

Date: Sun, 8 Sep 2002 16:27:12 EDT

X-Message-Number: 23

From a reader

What wonderful, comprehensive and sensitive lessons for both patient and

doctor of any disease. It should be required reading for all.

One thing that I found helpful when visiting the doctor with my husband, was

to bring a written report as well as questions. I did this by keeping a diary

on the computer of his symptoms and behaviors and then compressing this into

a short typed report. I gave the doctor a copy as he began the visit which he

read, usually without comment. As he conducted the examination he often

referred to my notes or asked questions that were obviously triggered by what

I had written. The doctor's questions were directed to my husband which

forced him to be more involved with his treatment. It allowed the doctor to

cover all of my points of concern at his speed and sequence. It also made

sure that I did not forget important details. I followed along and noted on

my copy the doctor's comments and suggestions since these are easily

forgotten afterward. Keeping this history in a binder made it easy to give a

concise and accurate report of the progression, treatment and drug reactions

to the various specialists we saw.

So grateful for this forum and wish it had been available when I so

desperately needed it.

answer

thank you for your kind comments it took a great effort to write it

and comments such as yours make me realize it was worth the time and effort

abe lieberman

----------------------------------------------------------------------

Subject: Spheramine

Date: Sun, 8 Sep 2002 17:31:24 EDT

X-Message-Number: 24

question

Dr Lieberman:

Yesterday's dietician digest mentioned a product

being tested in the UK called Spheramine. Do you know much

about this product.

answer

please click on below

http://www.titanpharm.com/press/Spheramine-PhaseII.html

----------------------------------------------------------------------

Subject: comtan & Requip

Date: Sun, 8 Sep 2002 16:36:45 -0400

X-Message-Number: 25

question

Dr. Leiberman,

Is the amount of Comtan ever increased? And if so, what would be a reason

for increasing the amount? Are there any negative consequences to

increasing the dosage?

answer

if the initial dose 200 mg with each dose of sinemet does not help with

wearing off i personally increase the dose to 400 mg it sometimes helps

this however must be discussed with your doctor

Also, when increasing Requip... how often do you increase the amount and

how do you know when you have reached the required amount for your body?

Do you just look for dyskinesia or are there other symptoms to indicate

that you should not increase any further?

answer

there is no set rule it depends on you and your doctor

abe lieberman

----------------------------------------------------------------------

Subject: Re: askthedoctor digest: September 07, 2002

Date: Sun, 8 Sep 2002 17:51:10 EDT

X-Message-Number: 26

This is for Jim who wrote asking about a parkinson's specialist in New

Mexico. I have had PD for almost 12 years and have been delighted with the

treatment I have received from Dr. Doulgas Barrett, Southwest Medical

Associates in Albuquerque, . Dr. Barrettt is a board-certified

neurologist. Good luck, Harry

---

END OF DIGEST

****************************************************

You are currently subscribed to askthedoctor as: fvjames@...

To unsubscribe send a blank email to leave-askthedoctor-38867W@...

Shaking Up Parkinson Disease - The book By Dr. Abraham Lieberman " ..shows how

patients at all stages of the disease can maintain their quality of life. " The

Book also supplies info on PD: how it's recognized, what causes it, who gets it,

when and how to get help, and much more. All Royalties are donated to the

National Parkinson Foundation. Get your copy today, by ordering online at

http://www.parkinson.org/bookfaq.htm

***************END OF DIGEST*************************

Link to comment
Share on other sites
Guest guest

Guest guest

Posted
Posted

Subject: Shaking Up Your Doctor Part 2 The examination

Date: Sun, 8 Sep 2002 09:28:16 -0400

X-Message-Number: 2

The Examination

Although the diagnosis of PD may be apparent as soon as you walk-in, the

doctor should stifle the urge to make such a quick diagnosis To begin

with, the diagnosis may be incorrect, or if correct, disturbing and not

appreciated by you or your family. At the beginning of the illness, you

and your family are frightened and anxious. You have probably sensed

something is wrong but have denied or dismissed the symptoms. Now you and

your family are guilty and angry for not seeking help sooner. If then a

stranger, the doctor, rapidly point out the obvious, it succeeds only in

reinforcing your guilt and redirecting the anger toward – the doctor.

A recurrent theme of patients seeking another opinion is that the previous

doctor: “Didn’t

examine me or listen to me.†For a satisfactory doctor-patient

relationship to be established, the doctor must appear caring and

involved. He should take a careful history, conduct an examination, and

spending time with you and your family. After such a relationship has

been established, his diagnosis is more likely to be accepted and his

recommendations followed.

During the history, you may make a remark that confirms the diagnosis.

Statements such as the following are almost diagnostic of PD: “My hand

only begins to shake when I sit down†or

“My handwriting has gotten so small that the bank won’t cash my checkâ€

It may become apparent to the doctor that you are not aware of any

difficulty either because of denial or because of your inability to sense

the difficulty. Although tremor and difficulty moving are prominent

symptoms in PD, there may also be perceptual, behavioral, and

personality changes that can interfere with your ability to recognize

your difficulties.

It may become apparent during the examination there is marital discord. A

spouse who constantly answers for you without being asked and makes

remarks such as: “He walks bent down like an ape†will not be the

sympathetic care-giver necessary for successful management. Marital

discord should be addressed. This is best done in a subsequent visit

after the doctor has a better understanding of your family dynamics.

It’s helpful if the doctor asks whether any family member or friend has

PD. If you have direct knowledge of someone who became bed-ridden

because of PD you will need reassurance that PD will not similarly affect

him.

The activities of daily living (ADL) of the Unified Parkinson Disease

Rating Scale (UPDRS) include speech, salivation, swallowing, handwriting,

cutting food and handling utensils, dressing, hygiene, turning in bed,

falling, freezing, walking, tremor, and sensory symptoms. The doctor or

his assistant’s review of your daily activities should not be reviewed

the way you review a laundry list. Careful and imaginative questioning is

always helpful.

You should be asked if there has been a change in your voice. Voice

implies difficulty with the mechanical rather than the linguistic aspects

of speech. An answer such as “yes, my voice seems to fade out at times

and people are always asking me to speak up†is almost diagnostic of PD.

You should be asked if you have recently noticed saliva escaping from the

corner of your mouth. This is a private symptom often apparent only to

you. The question usually elicits a reply such as “Yes, my pillow is wet

at night, but I didn’t mention it.†Although drooling may be a relatively

minor complaint, the symptom in the minds of many patients and families is

associated with dementia. You should be reassured that your drooling does

not mean you will “loose your mind.†Prominent swallowing difficulty

early in PD disease usually implies a PD-like disorder. Difficulty with

handwriting, cutting food, handling utensils, dressing, and hygiene to

some extent depends on whether your dominant hand is affected. If you

appear to be unaware of any difficulty with these tasks, the doctor may

ask you if your are slower in performing them. This question usually

elicits a response such as “Yes, but that isn’t anything, is it?â€

It’s helpful for the doctor to obtain specimens of your handwriting and

compare them with past samples. This may show when your disease actually

began. In some people it’s reassuring to know they had PD for several

years before they were aware of their symptoms. This implies their PD is

progressing more slowly than they thought.

If your non-dominant hand is primarily affected, the questions should be

directed so as to include those activities you usually performed with that

hand. Thus if you’re right-handed with left-sided PD, you may be asked

how you buttons your shirt sleeves on your right side or how you wash your

right shoulder.

Patients rarely associate difficulty with turning in bed with a disease,

do not mention it, and are surprised when asked. Such questions provide

you with insight into the scope of your disease by making you realize that

symptoms as different as tremor, drooling, and difficulty turning in bed

are part of the same process.

The diagnosis of PD is made after taking a history (such as that

described above) and by performing an examination in the office. A

Movement Disorder specialist should be able to diagnose PD and be correct

85% of the time. Sometimes, because of unusual symptoms or because of

unusual finding on the examination the doctor may order an MRI-scan. An

MRI-scan does not diagnose PD. An MRI-scan can “rule-out†other

conditions that MAY mimic PD: hydrocephalus, small strokes, tumors.

Rarely a PET-scan (Positron Emission Tomography) using a special isotope

called fluro-dopa or a SPECT-scan (Single Photon Emission Computed

Tomography) using a special isotope may be necessary to confirm the

diagnosis. These tests are not available everywhere, require special

expertise in interpreting them, and are supplements not substitutes for an

examination by a Movement Disorder specialist.

The Stages of Parkinson Disease

In 1967, before L-dopa or levodopa, Sinemet, or the dopamine agonists, Drs

Margaret Hoehn and Melvin Yahr began rating people with PD on a 6-point

scale: 0, 1, 2, 3, 4, 5. In 1967, the Scale reflected the underlying

state of their PD. Sinemet and the agonists changed PD, symptoms

receded and became masked or hidden. Sinemet, however, doesn’t halt the

progression of PD. Thus, when you are rated, the rating reflects not

your underlying PD, but your outward appearance. To rate the underlying

PD state, Sinemet must be stopped for at least one month. For most

people this is impossible.

After 2 – 5 years many PD people fluctuate: your day consists of being

"ON" (Sinemet working) followed by being "OFF" (Sinemet not working). If

this is so you should be rated in both your "ON" and "OFF" state. The

Hoehn and Yahr Scale rates : mobility. It does not rate anxiety,

aberrant behavior, depression, dyskinesia, memory loss, difficulty

thinking, or difficulty swallowing. In many people with PD these symptoms

overshadow mobility. The Hoehn and Yahr Scale is NOT a Cancer Rating

Scale: it is not a guide to treatment and outlook. However, despite its

limits, the Scale has endured, attesting to its usefulness.

The Hoehn and Yahr Scale

You should note whether Sinemet is working, whether you are "ON" Or

whether Sinemet is NOT working, whether you are “OFF†The doctor will

select the Stage that best describes you:

0: No visible symptoms of PD.

1: Symptoms of PD confined to One-side of the body.

2: Symptoms on Both-sides of the body, NO difficulty walking.

3: Symptoms on Both-sides of the body, minimal difficulty walking.

4: Symptoms on Both-sides of the body, moderate difficulty walking.

5: Symptoms on Both-sides of the body, unable to walk.

The Hoehn and Yahr Scale, your handwriting, or symptoms such as

progressive curvature of the spine may be used to track the progression of

PD

*****************************************************

A MESSAGE FROM ASK THE DOCTOR

----------------------------------

The NPF supports research in more than 60 PD Centers

throughout the world.

The NPF maintains an extensive website, and updates it

several times each week with articles from PD journals.

Latest News: http://www.parkinson.org/whatsnew.htm

Meetings : http://www.parkinson.org/shallwemeet.htm

PD Tests : http://www.parkinson.org/tests.htm

Support : http://www.parkinson.org/support.htm

All of these services, articles, news, and columns

such as " Ask The Doctor " and " Ask the Dietitian " are

free.

We need your support to continue providing these

valuable services. Please make an online donation at

https://www.parkinson.org/reqform.htm

*****************************************************

ASKTHEDOCTOR Digest for Sunday, September 08, 2002.

1. Shaking Up your Doctor: Getting More From Your Visit

2. Shaking Up Your Doctor Part 2 The examination

3. Shaking Up Your Doctor When You Need Treatment Pt 3

4. Shaking Up Your Doctor Part 4 When You Need Sinemet

5. leg cramps

6. another question

7. Re: Neurologist vs a Parkinson or MDS specialist

8. Re: Cabergoline

9. Re: askthedoctor digest: September 07, 2002

10. Re: askthedoctor digest: September 07, 2002

11. Disappointing DBS Surgery

12. swelling

13. much needed advice

14. donations

15. generic sinemet

16. Parkinson's Walk

17. toes

18. Re: Ask the Doctor Sept 8, 2002

19. Re: askthedoctor digest: September 04, 2002

20. Post-traumatic stress syndrome

21. Shingles and PD?

22. Re: askthedoctor digest: September 07, 2002

23. Re: Shaking Up your Doctor: Getting More From Your Visit

24. Spheramine

25. comtan & Requip

26. Re: askthedoctor digest: September 07, 2002

----------------------------------------------------------------------

Subject: Shaking Up your Doctor: Getting More From Your Visit

Date: Sun, 8 Sep 2002 09:26:41 -0400

X-Message-Number: 1

What to Expect from your Visit and How to Prepare

Shaking Up Your Doctor: Getting More From Your Visit

Abraham Lieberman MD, Medical Director, National Parkinson Foundation

Introduction

When you visit your doctor, it’s a successful if on leaving you know

what’s wrong and what the doctor can do to make you better. The meeting

is less satisfying but still successful if upon leaving you don’t know

what’s wrong but the doctor has told you, in words you can understand, why

he (or she) doesn’t know what’s wrong, but can tell you what to do to find

out

The visit’s a failure if on leaving you don’t know what’s wrong, the

doctor can’t tell you what’s wrong, and he can’t tell you how to find

out. The meeting’s a failure if on leaving you’re more anxious,

depressed, and confused then before. To minimize such failures, ever more

common is an age of shorter visits, harried doctors, and more complicated

problems, there are things you can do. Start by asking yourself why

you’re seeing the doctor. If you can’t say “why” in a few words, he might

not be able to help. He’s a doctor, not a mind reader.

When you visit your doctor you’re probably anxious or depressed thinking:

“What’s wrong? Is it bad? Will the doctor know? Can he help?”

You may be angry (whether you realize it or not), thinking: “Why me? Why

do I have to be sick? Why do I have to see this doctor? And why do I

have to pay for the privilege?”

Don’t let your anger get the best of you. Thus, if after being diagnosed,

you don’t agree with or like the diagnosis, don’t “shoot the messenger:”

He may be wrong and deserve being shot, but he may be right! And,

sometime soon, you may need him. Remember, you not he has the problem,

and you not he needs help.

In Parkinson disease (PD) there are specific situations for which you

should prepare.

(1) When you’re diagnosed (2) When you need treatment. (3) When you

need L-dopa (4) When you’re anxious (5) When you’re depressed (6) When

you have difficulty thinking (7) When you’re not sure it’s PD

1. When You’re Diagnosed

If you think you have PD, or your family doctor thinks you have PD and

refers you to a specialist, these are some common questions:

How Do I Know If The Specialist Is Good?

If your family doctor picked the specialist your doctor has probably

worked with him (or her), knows his credentials, knows his abilities, and

knows how he deals with people. However, in an era where HMO’s and

insurance companies limit your choices, this may not be so. Ask your

family doctor, or the specialist (or the specialist’s office manager):

Is The Specialist A Neurologist?

To practice as a neurologist a doctor, an MD (medical doctor) or a DO (a

doctor of osteopathy) must complete an accredited 3 year neurology

training program.

Is The Neurologist Board Certified?

Upon completion of their training program, a neurologist takes first a

written and then an oral examination in Neurology and Psychiatry. For a

neurologist 75% of the questions are on Neurology and 25% are on

Psychiatry. For a psychiatrist 75% of the questions are on Psychiatry and

25% are on Neurology. Neurologists and psychiatrists, upon successful

completion of their examination, are notified by the American Board of

Psychiatry and Neurology as being certified in either Neurology or

Psychiatry. Certification by the Board attests to, but doesn’t guarantee,

competence. Board certification (as evidenced by a diploma) is like a

Good Housekeeping Seal. There are exceptions. The best neurologist I

knew was not Board certified, he couldn’t bother with the test.

Is The Neurologist A Movement Disorder Specialist?

Within the field of Neurology there are accredited (by separate Boards)

sub-specialties. Movement Disorders (which includes PD) is a

sub-specialty but is not accredited by a separate Board. Movement

Disorders includes PD (approximately 80% of the practice), the PD-like

disorders (Multiple System Atrophy, Progressive Supranuclear Palsy,

Corticobasilar Degeneration), Dystonia, Essential Tremor, Huntington

disease, Restless Legs, Tardive Dyskinesia, and Disease. To be

called a Movement Disorder specialist a neurologist must take a 1-3 year

fellowship in a Movement Disorder program after finishing his Neurology

training. Usually, the Movement Disorder specialist will display a

certificate attesting to his completion of the fellowship. If you do not

see such a certificate, ask where the specialist trained in Movement

Disorders. There are excellent neurologists who treat PD and did not

complete Movement Disorder fellowships. They, like all most Movement

Disorder specialists, belong to the Movement Disorder Society (MDS). The

MDS is an excellent organization but it is not a Good Housekeeping seal of

approval. Any neurologist, or researcher can belong if they pay an

annual fee.

Is The Movement Disorder Specialist Famous? Is He (or She) a Thought

Leader?

Does his (or her) name come up when you search for PD articles on Google,

or Medline, or the National Library of Medicine, or Scirus.com? Is he

(or she) listed in the “Best Doctors in America?” Is he (or she) on

television whenever there’s a “breaking” story on PD? Is he (or she)

J Fox’s, or Janet Reno’s, or the Pope’s doctor?

The above reveals the specialist is familiar with PD and it’s nuances.

But he or she may not be right for you. He (or she) may be too busy doing

research, writing articles, giving speeches, or traveling to see you when

you want to see him. Or, when you do get an appointment you may not see

him but one of his fellows or associates. And while he may be available

for J Fox, or Janet Reno, or the Pope, he may not be available

for you.

What Else Should I Do or Know?

Ask yourself, “Why am I seeing the doctor? What is my main problem,

complaint, concern?” Although you’re anxious, afraid, depressed, and

you may not remember everything you want to ask, try not to come with a

long list. A long list will make the doctor anxious and depressed. List

the 3 or 4 main problems, complaints, or concerns in their order of

importance to you. If you’re satisfied the doctor has answered your 3 or

4 main problems, complaints, or concerns, and there are others you want

the doctor (and not his staff) to answer, make a return appointment. .

If you’re going to see the doctor because you think you have PD, say

exactly what prompted you to come. The following are examples: “I think

I have PD because I have a tremor.” “My wife or a friend or another doctor

said he or she thought I might have PD.” “I saw Muhammad Ali, or

J Fox, or Janet Reno, or the Pope on television and I think I have what

they have.”

Bring a summary of your medical history including serious and chronic

illness, hospitalizations, surgeries, allergies, medications taken, family

and personal risks, occupational risks, lifestyle risks. If what you have

to talk about is difficult to discuss, practice how to bring it up. If

you expect bad news bring someone supportive with you.

On your first visit take a family member or friend. They will provide

you with emotional support and comfort. They’re more likely to be

objective and to hear what the specialist said rather than what you

thought he said. A word of caution: too many family members or friends

in the room, more than two, changes the nature of the visit If you have

small children get a baby sister: children may be frightened by being in a

doctor’s office, and they can cry and be disruptive.

Look for a courteous, caring, and polite staff. Look for a clean office.

Look for information on PD: books, pamphlets, and newsletters. Look for

nurse or an assistant to ask you to fill out a form regarding PD. Such a

form tells the specialist what he thinks is important. The questions

asked, the clarity with which they are asked, and the detail into which

they go into will give you an idea as to how the specialist thinks.

Waits of more than ½ hour are rarely justified. Before you visit ask if

the doctor goes to the hospital before seeing patients If he does this

may result in delays because of unforeseen emergencies If the doctor

goes to the hospital ask for an appointment on a day he does not go. If

you asked the doctor to “squeeze you in”, and he did, expect a delay. A

doctor who will see you as an emergency or as a favor will generally set a

time he can see you, or he will say, “I cannot fit you in but I can have

my associate or my colleague do so.”

----------------------------------------------------------------------

Subject: Shaking Up Your Doctor Part 2 The examination

Date: Sun, 8 Sep 2002 09:28:16 -0400

X-Message-Number: 2

The Examination

Although the diagnosis of PD may be apparent as soon as you walk-in, the

doctor should stifle the urge to make such a quick diagnosis To begin

with, the diagnosis may be incorrect, or if correct, disturbing and not

appreciated by you or your family. At the beginning of the illness, you

and your family are frightened and anxious. You have probably sensed

something is wrong but have denied or dismissed the symptoms. Now you and

your family are guilty and angry for not seeking help sooner. If then a

stranger, the doctor, rapidly point out the obvious, it succeeds only in

reinforcing your guilt and redirecting the anger toward – the doctor.

A recurrent theme of patients seeking another opinion is that the previous

doctor: “Didn’t

examine me or listen to me.” For a satisfactory doctor-patient

relationship to be established, the doctor must appear caring and

involved. He should take a careful history, conduct an examination, and

spending time with you and your family. After such a relationship has

been established, his diagnosis is more likely to be accepted and his

recommendations followed.

During the history, you may make a remark that confirms the diagnosis.

Statements such as the following are almost diagnostic of PD: “My hand

only begins to shake when I sit down” or

“My handwriting has gotten so small that the bank won’t cash my check”

It may become apparent to the doctor that you are not aware of any

difficulty either because of denial or because of your inability to sense

the difficulty. Although tremor and difficulty moving are prominent

symptoms in PD, there may also be perceptual, behavioral, and

personality changes that can interfere with your ability to recognize

your difficulties.

It may become apparent during the examination there is marital discord. A

spouse who constantly answers for you without being asked and makes

remarks such as: “He walks bent down like an ape” will not be the

sympathetic care-giver necessary for successful management. Marital

discord should be addressed. This is best done in a subsequent visit

after the doctor has a better understanding of your family dynamics.

It’s helpful if the doctor asks whether any family member or friend has

PD. If you have direct knowledge of someone who became bed-ridden

because of PD you will need reassurance that PD will not similarly affect

him.

The activities of daily living (ADL) of the Unified Parkinson Disease

Rating Scale (UPDRS) include speech, salivation, swallowing, handwriting,

cutting food and handling utensils, dressing, hygiene, turning in bed,

falling, freezing, walking, tremor, and sensory symptoms. The doctor or

his assistant’s review of your daily activities should not be reviewed

the way you review a laundry list. Careful and imaginative questioning is

always helpful.

You should be asked if there has been a change in your voice. Voice

implies difficulty with the mechanical rather than the linguistic aspects

of speech. An answer such as “yes, my voice seems to fade out at times

and people are always asking me to speak up” is almost diagnostic of PD.

You should be asked if you have recently noticed saliva escaping from the

corner of your mouth. This is a private symptom often apparent only to

you. The question usually elicits a reply such as “Yes, my pillow is wet

at night, but I didn’t mention it.” Although drooling may be a relatively

minor complaint, the symptom in the minds of many patients and families is

associated with dementia. You should be reassured that your drooling does

not mean you will “loose your mind.” Prominent swallowing difficulty

early in PD disease usually implies a PD-like disorder. Difficulty with

handwriting, cutting food, handling utensils, dressing, and hygiene to

some extent depends on whether your dominant hand is affected. If you

appear to be unaware of any difficulty with these tasks, the doctor may

ask you if your are slower in performing them. This question usually

elicits a response such as “Yes, but that isn’t anything, is it?”

It’s helpful for the doctor to obtain specimens of your handwriting and

compare them with past samples. This may show when your disease actually

began. In some people it’s reassuring to know they had PD for several

years before they were aware of their symptoms. This implies their PD is

progressing more slowly than they thought.

If your non-dominant hand is primarily affected, the questions should be

directed so as to include those activities you usually performed with that

hand. Thus if you’re right-handed with left-sided PD, you may be asked

how you buttons your shirt sleeves on your right side or how you wash your

right shoulder.

Patients rarely associate difficulty with turning in bed with a disease,

do not mention it, and are surprised when asked. Such questions provide

you with insight into the scope of your disease by making you realize that

symptoms as different as tremor, drooling, and difficulty turning in bed

are part of the same process.

The diagnosis of PD is made after taking a history (such as that

described above) and by performing an examination in the office. A

Movement Disorder specialist should be able to diagnose PD and be correct

85% of the time. Sometimes, because of unusual symptoms or because of

unusual finding on the examination the doctor may order an MRI-scan. An

MRI-scan does not diagnose PD. An MRI-scan can “rule-out” other

conditions that MAY mimic PD: hydrocephalus, small strokes, tumors.

Rarely a PET-scan (Positron Emission Tomography) using a special isotope

called fluro-dopa or a SPECT-scan (Single Photon Emission Computed

Tomography) using a special isotope may be necessary to confirm the

diagnosis. These tests are not available everywhere, require special

expertise in interpreting them, and are supplements not substitutes for an

examination by a Movement Disorder specialist.

The Stages of Parkinson Disease

In 1967, before L-dopa or levodopa, Sinemet, or the dopamine agonists, Drs

Margaret Hoehn and Melvin Yahr began rating people with PD on a 6-point

scale: 0, 1, 2, 3, 4, 5. In 1967, the Scale reflected the underlying

state of their PD. Sinemet and the agonists changed PD, symptoms

receded and became masked or hidden. Sinemet, however, doesn’t halt the

progression of PD. Thus, when you are rated, the rating reflects not

your underlying PD, but your outward appearance. To rate the underlying

PD state, Sinemet must be stopped for at least one month. For most

people this is impossible.

After 2 – 5 years many PD people fluctuate: your day consists of being

" ON " (Sinemet working) followed by being " OFF " (Sinemet not working). If

this is so you should be rated in both your " ON " and " OFF " state. The

Hoehn and Yahr Scale rates : mobility. It does not rate anxiety,

aberrant behavior, depression, dyskinesia, memory loss, difficulty

thinking, or difficulty swallowing. In many people with PD these symptoms

overshadow mobility. The Hoehn and Yahr Scale is NOT a Cancer Rating

Scale: it is not a guide to treatment and outlook. However, despite its

limits, the Scale has endured, attesting to its usefulness.

The Hoehn and Yahr Scale

You should note whether Sinemet is working, whether you are " ON " Or

whether Sinemet is NOT working, whether you are “OFF” The doctor will

select the Stage that best describes you:

0: No visible symptoms of PD.

1: Symptoms of PD confined to One-side of the body.

2: Symptoms on Both-sides of the body, NO difficulty walking.

3: Symptoms on Both-sides of the body, minimal difficulty walking.

4: Symptoms on Both-sides of the body, moderate difficulty walking.

5: Symptoms on Both-sides of the body, unable to walk.

The Hoehn and Yahr Scale, your handwriting, or symptoms such as

progressive curvature of the spine may be used to track the progression of

PD

----------------------------------------------------------------------

Subject: Shaking Up Your Doctor When You Need Treatment Pt 3

Date: Sun, 8 Sep 2002 09:34:05 -0400

X-Message-Number: 3

When You Need Treatment

Although our ideas are changing, the prevailing opinion today is that if

you have symptoms of PD and can live with the symptoms it’s best not to be

treated. However, data is accumulating about drugs that slow the rate of

progression of PD. Such drugs include the dopamine agonists Mirapex and

Requip and Co-enzyme Q-10. At present there is disagreement as to whether

the benefits in slowing the rate of progression of PD are so clear-cut

that all newly diagnosed PD patients should be started on Mirapex and

Requip or Co-enzyme Q-10 in high doses (1200 mg per day).

There’s agreement that when symptoms interfere with daily life treatment

should be started. The disagreement centers on when symptoms are severe

enough to interfere with daily life. The tremor that does not bother you

may be a major embarrassment to your friend. The common reasons people

with PD seek treatment are:

(1) Increasing tremor. Your tremor may interfere with your daily

activities or may be a major embarrassment to you socially or at work.

(2.) Slowness of movement. You may become so slow in your activities that

this imperils your work or makes it impossible for you to go without

help.

(3). Difficulty walking. Not being able to keep up with your partner. Or

an increased tendency to fall.

(4) Painful stiffness or rigidity of a major joint: the shoulder or hip.

Cramping of your arms or legs.

Dopamine Agonists as First Treatment

For people 60 years and younger who are diagnosed with PD and who need

treatment the first line drugs are the dopamine agonists, Mirapex and

Requip and Permax PD results from a loss of cells deep in the brain in a

region called the substantia nigra.

The cells in the substantia nigra are darkly pigmented and contain

dopamine. Indeed their dark pigment represents condensed molecules of

dopamine

The cells in the substantia nigra project to a region of the brain

called the striatum (so named because the region is striated or striped)

L-dopa or levodopa, a naturally occurring amino acid, similar to the amino

acid tyrosine, is changed inside the cells of the substantia nigra to

dopamine which is then transported upward through long processes of the

cells called axons

In the striatum dopamine is released and taken up by cells in the

striatum. The dopamine is released onto dopamine specialized receptors.

There are 2 kinds of receptors: the DA-1 and DA-2. The agonists stimulate

DA-2. Dopamine stimulates DA-1 and DA-2. This may make dopamine more

powerful but it also may result in dyskinesia. Drugs such as Requip,

Mirapex and Permax, like dopamine, can attach themselves to the receptors

and thus mimic the actions of dopamine. They are called dopamine mimetic

or dopamine agonists. A dopamine antagonist is a drug that blocks the

dopamine receptor (or antagonizes) it while an agonist is the opposite,

hence the name.

There is evidence that Mirapex and Requip, in addition to improving the

symptoms of PD, may slow the progression of PD. As PD progresses, the

cells in the substantia nigra drop-out and the remaining cells, like

factories, must work harder, to “pump” dopamine to the striatum. The

agonists mimic the actions of dopamine in the striatum: they do not need

the remaining dopamine cells to “pump” dopamine to the striatum. In order

for you and your doctor to make a logical decision as to whether this

information warrants a change in your treatment requires an understanding

of how the studies were done. Several questions will jump to mind.

Question 1. I was recently diagnosed with PD. I and my doctor do not

feel my symptoms are sufficiently troubling to warrant treatment. In

light of the new studies should I be placed on Mirapex or Requip even

though my symptoms are not sufficiently troubling to warrant treatment?

In the first study patients whose symptoms were sufficiently troubling to

require treatment were randomly and blindly assigned to either Mirapex or

Sinemet. The measure of PD progression used an imaging technique called

SPECT or single photon emission computed tomography. The SPECT study uses

an isotope abbreviated CIT that labels dopamine transporters. The

dopamine transporters are located on axons of dopamine cells. The axons

of these cells project to the striatum. SPECT measures the

radio-activity of the striatum by lighting up the dopamine transporters.

The fewer cells in the substantia nigra the less the distribution and

intensity of radio-activity.

In the second study patients whose symptoms were sufficiently troubling to

require treatment were randomly and blindly assigned to either Requip or

Sinemet. The measure of PD progression used an imaging technique called

PET or positron emission tomography. PET uses an isotope called

fluro-dopa. Fluro-dopa is transported up the substantia nigra axons into

the striatum. Here, fluro-dopa is taken up by the dopamine receptors on

nerve cells of the striatum. PET, like SPECT, measures the radio-activity

of the striatum. The fewer substantia nigra cells the less the

distribution and intensity of radio-activity. As, at present, there are

no direct comparisons between SPECT and PET, it cannot be said which is a

more accurate marker of the remaining substantia nigra cells. Both

studies compared the rate of progression of PD in a group of newly

diagnosed PD patients whose symptoms were sufficiently troubling to

require treatment. Although it’s reasonable to believe newly diagnosed

PD whose symptoms are NOT sufficiently troubling to warrant treatment will

also benefit, the potential benefit in slowing the disease progression

must be weighed against the side effects of Mirapex or Requip. This

issue must be discussed with your doctor.

Question 2. I have PD and my symptoms were sufficiently troubling to

start me on Sinemet. In light of the new data should I be changed to, or

should I add Mirapex or Requip to Sinemet?

In addition to the two recent studies, other studies were done comparing

Mirapex, Requip and Sinemet. In a 4 year study comparing Mirapex and

Sinemet, one separate from the SPECT study, 301 newly diagnosed PD

patients whose symptoms required treatment were randomly and blindly

assigned to treatment with either Mirapex or Sinemet. After 3 months

investigators were, if needed, allowed to add Sinemet to all patients.

After 4 years 25% of patients initially assigned to Mirapex had

dyskinesia (but only after supplemental Sinemet was added) versus 54% of

patients assigned to Sinemet. 54% of patients assigned to Mirapex had

“wearing off” versus 71% of patients assigned to Sinemet.

In a 5 year randomized trial of Requip versus Sinemet in 268 recently

diagnosed PD patients reported in the New England Journal of Medicine 2000

(volume 343, page 1484) whose symptoms required treatment and were

randomly and blindly assigned to treatment with either Requip and Sinemet.

After several months investigators were, if needed, allowed to add

Sinemet to all patients. After 5 years 20% of patients initially assigned

to Requip had dyskinesia (but only after Sinemet was added to Requip)

versus 45% of patients initially assigned to Sinemet. The improvement of

symptoms was comparable in patients initially assigned to Sinemet or

Requip. The dose of Requip was 16.5 mg per day. The dose of Sinemet was

427 mg per day.

Because of differences in the way patients were assigned to treatment in

the studies on Mirapex and Requip the results of the two studies cannot be

compared. Of the patients completing both studies and not dropping out

because of side effects or failure to comply with the terms of the study,

approximately 30% remained on Requip without Sinemet for 4 - 5 years.

Question 3 repeated. I have PD and my symptoms were sufficiently troubling

to start me

on Sinemet. In light of the new data should I be changed to, or should

I add Mirapex or Requip to Sinemet?

What will be done will be determined, in part, by your age. If you’re

60 years or less, most neurologists, before the new studies, started you

on an agonist because of the decreased likelihood of an agonist

precipitating “wearing-off”, “on-off”, or dyskinesia. With the new

studies, this trend will be accelerated.

If you’re 70 years or older, most neurologists will start you on

Sinemet. This is because

in 30% of PD patients 70 years or older, PD becomes associated with a

dementia. The dementia evolves slowly. Although the symptoms of dementia

are obvious when they appear, before they appear the underlying dementia

is “silent” and difficult to recognize. Often the first symptom of such a

“silent” dementia is the appearance of a psychosis: hallucinations,

delusions, agitation. The psychosis is often precipitated by drugs and the

agonists are more likely than Sinemet to do this. Because of this the

treatment of patients 70 years or older may not change because the desire

to slow disease progression may be less critical at age 70 years than the

fear of precipitating a psychosis, unmasking, temporarily, an underlying

dementia..

If you’re 60 - 69 years in light of the new studies, many neurologists

will start you

on Mirapex or Requip. Many will start you on Sinemet. In addition, if

you’re on Sinemet and having increased symptoms of PD, most neurologists

will now add Mirapex or Requip rather than increase Sinemet. Mirapex and

Requip will be added as much for their effect on the symptoms of PD as for

their effect on slowing disease progression. Although the possibility of

precipitating a psychosis, unmasking, temporarily, an underlying dementia

is less at age 60 - 69 than at age 70 years or older, this possibility

remains. In these patients the judgment of the neurologist as to which

drug to use will be critical.

----------------------------------------------------------------------

Subject: Shaking Up Your Doctor Part 4 When You Need Sinemet

Date: Sun, 8 Sep 2002 09:37:04 -0400

X-Message-Number: 4

When You Need L-Dopa (Levodopa, Sinemet)

Sinemet, a combination of two drugs: carbidopa plus levodopa, remains the

most potent drug for the treatment of PD. As people with PD live longer

(because treatment delays their becoming bed-bound) the side-effects of

treatment seem to over-shadow the benefits. When your doctor suggests

you start Sinemet, your first thought may be: “Isn’t Sinemet dangerous?

Isn’t it toxic?” Sinemet like any drug may be toxic in that it may have

side-effects. However, it is not toxic in the sense that it destroys or

poisons cells and makes PD worse. PD progresses, gets worse, because of

the underlying disease process, not because of L-dopa or Sinemet.

Next ask yourself whether you think Sinemet is toxic or dangerous or

whether you’re afraid to accept the fact that your PD has progressed and

you need additional treatment? It’s helpful and revealing but painful to

remind people with PD about the impact Sinemet has had on the main

symptoms of PD: tremor, rigidity, slowness of movement, and difficulty

walking. Before Sinemet more people with PD became totally bed-bound

(Stage 4 or 5 PD) in a shorter period of time than now.

Parkinson Disease Before Sinemet

In 1967, before L-dopa, before Sinemet, people diagnosed with PD lived on

average, 5 - 15 years from diagnosis to death. Death came as follows:

(1) People with PD, 5-15 years after being diagnosed became bed-bound.

Some developed difficulty swallowing and aspirated or swallowed food into

the lungs. This resulted in an aspiration pneumonia. The pneumonia

challenged the defenses in the lungs while the rigidity of PD restricted

the movement of the chest wall muscles, the muscles necessary to overcome

the pneumonia. As the pneumonia spread, it overwhelmed the body’s

defenses. Or the infection spread from the lungs to the blood and people

died of sepsis (blood poisoning).

(2) People with PD, 5-15 years after being diagnosed became bed-bound.

Unless they were turned in bed every hour, their skin broke down, they

developed pressure sores, the sores became infected, and the infection

spread. The person debilitated from PD lacked the will and the ability

to fight the infection and died.

The introduction first of L-dopa, then Sinemet changed everything.

People diagnosed with PD now live longer. Sinemet doesn’t “cure” PD, but

it postpones the day when people become bed-bound, and this in turn

postpones the complications of being bed-bound. Would any of us trade

these extra years for the side-effects of Sinemet?

As PD advances, as more cells are lost, the production and delivery of

dopamine from the cell “factories” in the nigra becomes more erratic,

less continuous, sporadic. This is related to continued loss of cell

“factories” in the nigra and to levodopa’s short duration of action.

Together they may be responsible for the “wearing-off”, “fading-out”, or

“turning-off” of an individual dose of Sinemet. To make-up for the

more erratic, less continuous delivery of dopamine from the cell

“factories” in the nigra, the receptors for dopamine on the cells in the

striatum become super-sensitive. Initially, the dose of Sinemet required

to relieve symptoms is less than that required to cause dyskinesia. As

PD progresses, as the delivery of levodopa becomes more erratic, less

continuous, as striatal cells become super-sensitive, the dose of Sinemet

required to relieve symptoms approaches that required to cause

dyskinesia.

Making Sinemet Last Longer

When Sinemet’s short duration of action was recognized and related, in

part, to “wearing-off”, “fading-out” or “turning-off” of individual doses

of Sinemet, attempts were made to prolong it’s action and make it’s

delivery to the brain less erratic, more continuous. By providing the

over-worked cell “factories” in the nigra with a more continuous delivery

of levodopa, the “factories”, although fewer in number, are able to

produce dopamine more continuously, similar to the way they produced

dopamine early in PD, during the Sinemet “honeymoon.”

Sinemet Controlled Release (Sinemet CR)

To overcome Sinemet’s short duration of action, Sinemet was embedded in a

specific matrix that delayed it’s absorption in the stomach and resulted

in a more prolonged delivery of an individual dose of Sinemet to the

brain. This form of Sinemet, Sinemet is called Sinemet controlled

release (Sinemet-CR). Sinemet-CR is available in two ratios: Sinemet-CR

50/200 which contains 50 mg of carbidopa and 200 mg of levodopa, and

Sinemet-CR 25/100 which contains 25 mg of carbidopa and 100 mg of

levodopa. Sinemet-CR had a modest effect on “wearing-off”, “fading out”,

and “turning-off” of an individual dose of Sinemet. Although the matrix

in which Sinemet was embedded delayed and prolonged the delivery of

levodopa from the stomach, the delivery remained erratic and was not

continuous. More-over, people who were on regular Sinemet complained

upon being changed to Sinemet-CR, that Sinemet-CR didn’t kick-in, and

often, when they were “off”, Sinemet-CR, unlike regular Sinemet, didn’t

turn them-on. This was related to the fact that regular Sinemet results

in a high pulse or peak of levodopa 30 - 60 minutes after taking an

individual dose. It is this high pulse or peak that results in the

feeling of Sinemet kicking-in and turning people on. The absence of a

high pulse or peak limited Sinemet-CR’s usefulness. In some people, the

benefits of Sinemet-CR could be realized, in part, by taking regular

Sinemet together with Sinemet-CR. The limitation in this approach were

that two separate tablets, regular Sinemet and Sinemet-CR, although

swallowed together were not absorbed together from the stomach, while

the high dose of levodopa that resulted from taking Sinemet and

Sinemet-CR together resulted in dyskinesia.

Selegiline or Eldepryl

Levodopa, the active part of Sinemet, is “broken-down” metabolized by

3 separate enzymes: dopa decarboxylase, COMT, and MAO-B. Carbidopa by

blocking dopa decarboxylase in the stomach and liver allows more

levodopa to leave the stomach and enter the brain. However, although

more levodopa leaves the stomach, it’s delivery to the brain remains

erratic and not continuous. Carbidopa decreased the nausea associated

with having too much dopamine produced in the stomach, carbdiopa allowed

more people to take less levodopa, but carbidopa did not result in less

“wearing off” and it did not result in less dyskinesia. MAO-B is an

enzyme present inside dopamine cells in the brain. By blocking or

inhibiting MAO-B, the dopamine formed from levodopa remains in place

longer. Eldepryl blocks or inhibits MAO-B.

Eldepryl, 5 mg twice a day, when added to Sinemet has a modest effect

on prolonging Sinemet ‘s duration of action and this in turn, has a mild

to modest effect on decreasing the “wearing off” of an individual dose of

Sinemet. In the late 1980s and early 1990s there was great interest in

Eldepryl because it was believed, incorrectly, that Eldepryl slowed the

progression of PD.

COMT is the most potent of the enzymes that break-down levodopa, and

blocking (inhibiting) COMT has the greatest effect on Sinemet:

prolonging it’s duration of action and resulting is a less erratic and

more continuous delivery of levodopa to the brain. COMT is present in

the stomach, liver, kidney, and brain. COMT also circulates in the blood.

Comtan which blocks or inhibits COMT has emerged as a safe and widely used

drug..

When Sinemet is given without Comtan most of the levodopa is changed by

stomach, liver, and circulating COMT to 3 methoxy-dopa (or 3-OMD).

3-OMD has no effect on PD, it acts as a reservoir or “sink” for levodopa.

Such a “sink” delays the action of Sinemet and results in a more

erratic and less continuous delivery of levodopa to the brain. Comtan by

inhibiting COMT outside the brain results in a more sustained level of

levodopa in the blood. Unlike Sinemet-CR, the peak effect of levodopa is

unchanged, so people who take Comtan with regular Sinemet feel themselves

“turning-on” as Sinemet “kicks-in.”

The more sustained, continuous, level of levodopa in the blood results and

in the brain results in a decrease in symptoms such as “wearing-off.”

This in turn results in the person experiencing more “on” time, more time

when his symptoms of PD are reduced or absent. For the most benefit

Comtan should be started early, when symptoms of “wearing-off” begin.

This could be when: (1) You’re thinking of switching from regular

Sinemet 3 times a day to regular Sinemet 4 times a day. (2) You’re

thinking of switching from Sinemet-CR 2 or 3 times a day to Sinemet-CR 3

or 4 times a day. (3)You wake-up in the morning and you immediately need

Sinemet (4) Your dose of Sinemet does not “kick-in.” (5) You need an

extra dose of Sinemet before you go out at night.

Comtan (200 mg) should be given with each dose of Sinemet up to 8 times

per day. Comtan can be used with regular Sinemet or Sinemet-CR. The dose

of Comtan (200 mg) does not change regardless of the number of Sinemet

tablets in each dose. Comtan when added to Sinemet when increase the side

effects of Sinemet such as dyskinesia, confusion, delusions and

hallucinations. If side-effects occur the simplest way to treat them is

to eliminate one or more of doses of Sinemet.

----------------------------------------------------------------------

Subject: leg cramps

Date: Sat, 7 Sep 2002 21:11:21 -0400

X-Message-Number: 5

question

dear dr.

are leg camps associated with pd? How can they be dealt with? My husband

has them in bed, when relaxed... He hadn't had any for many years...

thanks for your help. calif. partner...

answer

yes

please read the following

http://parkinson.org/parkpain.htm

----------------------------------------------------------------------

Subject: another question

Date: Sat, 7 Sep 2002 21:15:14 -0400

X-Message-Number: 6

questions

what is your opinion about ordering meds from canada, meds are sooo....

expensive here in US... thanks

answer

if you can get the meds you want at a cheaper price it's all to your

benefit long term remember the research that makes these drugs

available at all is done in the US prices are higher here because all

of us, in effect, subsidize Canada

abe lieberman

----------------------------------------------------------------------

Subject: Re: Neurologist vs a Parkinson or MDS specialist

Date: Sat, 7 Sep 2002 21:21:59 EDT

X-Message-Number: 7

question

I read with special interest the note from in NM who was looking for a

PD specialist. We too live in NM and I am the caregiver for my 72 yr. old

husband who has " advanced " LBD Parkinsonism. We feel we have a good

neurologist but I have often wondered if my husband could/would benefit

anything from seeing a PD specialist or going to Mayo or the parkinsons

institute in Phoenix?? Know this is a difficult question to answer - He is

currently taking 24 mg. of Requip a day, and is even having difficulty

walking w/ a walker, sleeps a lot etc.. I know things reach a point where

there really isn't much else that can be done but want to make sure we have

left " no stones unturned " that might help.

Any comments are greatly appreciated. THANKS

AEWID@...

answer

you can always benefit from another opinion by a good doctor

abe lieberman

----------------------------------------------------------------------

Subject: Re: Cabergoline

Date: Sun, 8 Sep 2002 00:17:28 -0400

X-Message-Number: 8

question

Thank you for your prompt answer Dr. Lieberman. Would you say then that =

even if cabergoline has a longer half life it does not really make a diff=

erence? Would it be the same as if taking Mirapex or Requip? Thank you.

answer

i did the original studies on cabergoline in the united states it is

a good drug

i did the original studies on mirapex and requip in the united states

they are better drugs

abe lieberman

----------------------------------------------------------------------

Subject: Re: askthedoctor digest: September 07, 2002

Date: Sun, 8 Sep 2002 08:35:48 EDT

X-Message-Number: 9

question

Dear Dr. Leiberman, I did what you told me to do and there was no website

for it. Do you happen to know a p.d. specialist in the Pgh area? I hit

http://wwwparkinson.org/docgetmap.HTM and nothing happened. Gloria

answer

check this with your provider if you have aol amoung providers you will not be

able to get the map

B. Jozefczyk, MD. MDS

2276 Sidgefield Lane

Pittsburgh, PA 15241

4126924600

Baser, MD.

4919 Ashbaugh Road

Pittsburgh, PA 15568

Hassan Hassouri, MD.

University of Pittsburgh

1 Alleghany Square

Pittsburgh, PA 15212

4123214603

Y. , MD., Zigmond, MD.

University of Pittsburgh- NPF Center of Excellence

3471 Fifth Ave

Ste 810

Pittsburgh, PA 15213

abe lieberman

----------------------------------------------------------------------

Subject: Re: askthedoctor digest: September 07, 2002

Date: Sun, 8 Sep 2002 08:17:38 EDT

X-Message-Number: 10

question

Could you please give me the name of a good pd neurologist in

Binghamton,New York area .

Thank you so much for being

here.

answer

i would go to either albany or syracuse

http://www.parkinson.org/docgetmap.htm

dr factor in albany

the university hospital in syracuse

abe lieberman

----------------------------------------------------------------------

Subject: Disappointing DBS Surgery

Date: Sun, 8 Sep 2002 08:19:37 -0400

X-Message-Number: 11

question

My 72 yr. old mother was diagnosed with PD 8 yrs. ago. Her symptoms were

not very severe, consisting almost exclusively of tremors and eventually

some joint stiffness. As the tremors were becoming more bothersome, she

decided to go through with one-sided DBS surgery in April, 2002. The

surgeon in Sweden, where she had it done, was the first to perform this

procedure over there and had since done over 200 DBS operations before my

mother.

Her surgery recovery was complicated by a staph infection that had gone

undetected. Immediately after the procedure, she was hospitalized with

urinary tract and blood infection. As a result adjustments were delayed.

Having recovered from the infections and having had several adjustments

since the surgery, things are worse than they were before all of this. The

tremors are worse than ever, she has developed depression, and is overly

sensitive to heat and water. She was trying to take a hot bath but felt so

bad that she is now opting for cool showers.

My question is if these symptoms are just a function of the adjustments

and might be eliminated through correction? Or is she just part of the

small percentage of surgeries that are not considered successful? We had

great hopes for this surgery, now we would at least like to be able to get

her back to where she was! Any suggestions and information would be

greatly appreciated. Thank you.

Ann-Mari Grisham

answer

inherent in any surgery are complications these occur at the best places

with stringent precautions they are more common in older people whether the

surgery failed in your mother because of the mulitiple infections because the

adjustments were not made or because the electrode is not in its proper place i

cannot say my recommendation is that

if she lives in the US she go to a place in the US with a large experience in

DBS such as the cleveland clinic in cleveland or the university of kansas

abe lieberman

----------------------------------------------------------------------

Subject: swelling

Date: Sun, 8 Sep 2002 13:09:25 -0700

X-Message-Number: 12

question

dear dr. leibermann=20

i was diagnosed with parkinsons in may =

this year at present i am taking 6 mg requip 2mgx 3times a day. i also =

have highbloodpressure and reflux and hegh cholestrol level and i am =

taking 20mg enalapril 10mg losec 2.5 mg bendrofluazide and 20mg of =

simvastatin each 1 per day. the parkinsons has affected me down theright =

side and recently i have been experiencing swelling in my right foot and =

hand quite severe in my right foot enough to cause quite severe =

discomfort in my foot do u think this is caused by my parkinsons or =

something else . i would be grateful forany help thanking u in advance . =

i think u do a wonderful job and god bless u to keep up the good work =

doreen

answer

the agonists mirapex requip and permax can cause such swelling

even beginning on one side more than the other

please read the following

http://www.parkinson.org/dopamine.htm

----------------------------------------------------------------------

Subject: much needed advice

Date: Sun, 8 Sep 2002 09:00:53 -0400

X-Message-Number: 13

question

My father takes sinemet 50/200 every three hours for a total of 7 doses a

day. He is also taking Requip and up to 2.5 X 3. He was hospitalized due

to sudden nighttime incontinence. The urologist started him on

Detrol(which helped with the incontinence) and although his prostate is

fine he placed him on Flowmax because my dad is up 6 to 9 times during the

night to urintate!! They also started him on Trazadone as high at 150mg,

in the hospital, with the thought that this would help him get a good

nights sleep... but he still wakes to go to the bathroom.

Many times it is just an urge to go, but his is awakened each time all the

same. My Mom has spoken with his current Neurologist(not a specialist in

Parkinson's) and she says that she feels that the DBS will help, but he

does not have an appointment with Dr. Pahwa at KU Med until Oct. 8 and has

been told that if he qualifies for the surgery it would not be until

around Jan. that it could be done.

Is there anything you can suggest? (manipualtion of current meds, new

meds, questions to ask the doctor, anything???) January is a long time off

and although, it seems like such a minor thing to most, Dad is now to

unsteady during the night to go to the bathroom alone, so Mom is having to

go with him. These frequent trips are REALLY taking a toll on her. They

are both in their 70's and they are not getting much sleep at all. If

something happens to her I do not know what we will do. I help as much as

I can, but have two little ones so taking the " night shift " is a problem.

Thank you so very much!!!

answer

the dbs may improve his mobility it will not help with the bladder problem

the control of the bladder will not be affected by the dbs

be certain you have clarified this with the doctors

without seeing and examining your father i cannot answer specifically

the simplest thing is to get a bed side commode

and have someone other than your mother stay with your father on some nights to

give your mother a rest these are the most helpful things

you can do more helpful than trying to manipulate drugs which have

already been artfully manipulated

abe lieberman

----------------------------------------------------------------------

Subject: donations

Date: Sun, 08 Sep 2002 09:13:29 -0400

X-Message-Number: 14

question

We presently donate to a charitable organization that automatically

deducts $25 per month directly from our checking account. Now that 2 of

the large PD organizations are merging, we want to be even more

supportive financially of them, and wonder if there is a way to have

that type of deduction taken automatically. I would imagine that many

people would donate if that arrangement were available. We can't afford

more than that, but if every PD family donated $25 per month, surely

that would be a great help. What do you think?

answer

if 10% of the 25,000 people who each day use ASK THE DOCTOR or ASK THE

SURGEON or ASK THE DIETITIAN gave us $25 a month we would have

62,500 a month our website gets less than a tenth of that

if we had this for one year we would have 750,000 per year and we

could almost double our peer reviewed research grants for innovative

research

would that this happened

we would come up with a plan to make it easier for you to donate

monthly to THE PARKINSON FOUNDATION

abe lieberman

----------------------------------------------------------------------

Subject: generic sinemet

Date: Sun, 8 Sep 2002 18:32:08 -0400

X-Message-Number: 15

Dear Dr. Lieberman:

My wife (PWP) was recently hospitalized under care of an internist. When

the nurse brought the Sinemet CR 50/200 the first time, I noticed it was

slightly different. The nurse said it was generic (from the hospital

pharmacy). I stated firmly that our patient’s neurologist had instructed

us not to use generic Sinemet. We used our own Sinemet from that point

on.

The tablet in question is a unit dose in blister package, marked:

“PKG. BY UDL, ROCKFORD, IL. " The tablet is a gray color. It may be all

right for some patients, but not for my wife. Checking other websites,

UDL has had three recalls of other med products in the past twenty months.

We Caregivers have to stay alert.

----------------------------------------------------------------------

Subject: Parkinson's Walk

Date: Sun, 8 Sep 2002 10:14:04 EDT

X-Message-Number: 16

Hi Dr. Lieberman,

Is there a place where I can post this?

Hello Readers,

I've been writing to Dr. Lieberman for a couple of months, ever since my

mother was diagnosed with Parkinson's. We all know how devastating this

disease is.

I will be walking in Long Island, NY in a Parkinson's fundraiser on Saturday,

Sept 28 of this year. My fundraising is in honor of my mother, and for all

the afflicted, incredible loved ones for their strength and perserverance and

heart in dealing with Parkinson's . The money will be going toward

Parkinson's research. Anybody who would like to make a pledge to the cause

can write a check out to:

American Parkinson Disease Association, Inc. (please use my name on the memo

of your check so I can have it tallied in my pledge account) and send it

directly to the foundation at :

ADPA Information and Referral Center

C/o NYCOM/NYIT

PO Box 8000

Old Westbury, NY 11568.

Any contribution would be GREATLY appreciated. Anybody who is interested in

mailing it directly to me, or has any questions, please email me at

Jsavitzky@....

Thanks,

Jill Savitzky

----------------------------------------------------------------------

Subject: toes

Date: Sun, 8 Sep 2002 10:40:27 EDT

X-Message-Number: 17

question

i am a patient with newly diagonosed p.d.

sometime my toes go under and have a hard time trying to straightenening

them ,is this normal with pd.

thank you

sandie

answer

yes

this is usually a symptom of under medication

abe lieberman

----------------------------------------------------------------------

Subject: Re: Ask the Doctor Sept 8, 2002

Date: Sun, 8 Sep 2002 09:45:44 -0500

X-Message-Number: 18

Breeden M.D. of Farmington,NM is the first and finest neurologist

I've seen in my twenty years with parkinsons.

----------------------------------------------------------------------

Subject: Re: askthedoctor digest: September 04, 2002

Date: Sun, 8 Sep 2002 12:33:22 EDT

X-Message-Number: 19

question

Dear DR Lieberman,

Would you please give me the name of a good neurologist in the Muskegon or

Grand Rapids, Michigan area.

Thank you, Lorraine

answer

please click onto the following

http://www.parkinson.org/docgetmap.htm

----------------------------------------------------------------------

Subject: Post-traumatic stress syndrome

Date: Sun, 8 Sep 2002 13:38:25 -0400

X-Message-Number: 20

question

Is there a causal link between pst-traumatic stress syndrome and

Parkinson's Disease?

answer

to my knowledge there is not

abe lieberman

----------------------------------------------------------------------

Subject: Shingles and PD?

Date: Sun, 8 Sep 2002 11:10:59 -0700

X-Message-Number: 21

question

Had shingles about 5 years ago, dx with PD 3 years ago. Felt since

having the shingles, the PD symptoms started. Has there been any

research into the virus of shingles causing PD? Read your Digest every

day and thank you for being there for all of us.

answer

as we do not know the cause of pd a viral infection remains an option however

at present there is no evidence that infection with shingles or chicken pox

(it's the same virus) is a cause of pd

abe lieberman

mswer

----------------------------------------------------------------------

Subject: Re: askthedoctor digest: September 07, 2002

Date: Sun, 8 Sep 2002 15:45:27 -0400

X-Message-Number: 22

question

We also live in the Binghamton area, and are considering Syracuse, Albany

and Rochester. We have been leaning toward Rochester because there is a

PD Center of Excellence there. In your Opinion, would that be beneficial?

answer

the center in rochester is one of the best in the world

abe lieberman

----------------------------------------------------------------------

Subject: Re: Shaking Up your Doctor: Getting More From Your Visit

Date: Sun, 8 Sep 2002 16:27:12 EDT

X-Message-Number: 23

From a reader

What wonderful, comprehensive and sensitive lessons for both patient and

doctor of any disease. It should be required reading for all.

One thing that I found helpful when visiting the doctor with my husband, was

to bring a written report as well as questions. I did this by keeping a diary

on the computer of his symptoms and behaviors and then compressing this into

a short typed report. I gave the doctor a copy as he began the visit which he

read, usually without comment. As he conducted the examination he often

referred to my notes or asked questions that were obviously triggered by what

I had written. The doctor's questions were directed to my husband which

forced him to be more involved with his treatment. It allowed the doctor to

cover all of my points of concern at his speed and sequence. It also made

sure that I did not forget important details. I followed along and noted on

my copy the doctor's comments and suggestions since these are easily

forgotten afterward. Keeping this history in a binder made it easy to give a

concise and accurate report of the progression, treatment and drug reactions

to the various specialists we saw.

So grateful for this forum and wish it had been available when I so

desperately needed it.

answer

thank you for your kind comments it took a great effort to write it

and comments such as yours make me realize it was worth the time and effort

abe lieberman

----------------------------------------------------------------------

Subject: Spheramine

Date: Sun, 8 Sep 2002 17:31:24 EDT

X-Message-Number: 24

question

Dr Lieberman:

Yesterday's dietician digest mentioned a product

being tested in the UK called Spheramine. Do you know much

about this product.

answer

please click on below

http://www.titanpharm.com/press/Spheramine-PhaseII.html

----------------------------------------------------------------------

Subject: comtan & Requip

Date: Sun, 8 Sep 2002 16:36:45 -0400

X-Message-Number: 25

question

Dr. Leiberman,

Is the amount of Comtan ever increased? And if so, what would be a reason

for increasing the amount? Are there any negative consequences to

increasing the dosage?

answer

if the initial dose 200 mg with each dose of sinemet does not help with

wearing off i personally increase the dose to 400 mg it sometimes helps

this however must be discussed with your doctor

Also, when increasing Requip... how often do you increase the amount and

how do you know when you have reached the required amount for your body?

Do you just look for dyskinesia or are there other symptoms to indicate

that you should not increase any further?

answer

there is no set rule it depends on you and your doctor

abe lieberman

----------------------------------------------------------------------

Subject: Re: askthedoctor digest: September 07, 2002

Date: Sun, 8 Sep 2002 17:51:10 EDT

X-Message-Number: 26

This is for Jim who wrote asking about a parkinson's specialist in New

Mexico. I have had PD for almost 12 years and have been delighted with the

treatment I have received from Dr. Doulgas Barrett, Southwest Medical

Associates in Albuquerque, . Dr. Barrettt is a board-certified

neurologist. Good luck, Harry

---

END OF DIGEST

****************************************************

You are currently subscribed to askthedoctor as: fvjames@...

To unsubscribe send a blank email to leave-askthedoctor-38867W@...

Shaking Up Parkinson Disease - The book By Dr. Abraham Lieberman " ..shows how

patients at all stages of the disease can maintain their quality of life. " The

Book also supplies info on PD: how it's recognized, what causes it, who gets it,

when and how to get help, and much more. All Royalties are donated to the

National Parkinson Foundation. Get your copy today, by ordering online at

http://www.parkinson.org/bookfaq.htm

***************END OF DIGEST*************************

Link to comment
Share on other sites
Guest guest

Guest guest

Posted
Posted

Subject: Shaking Up Your Doctor When You Need Treatment Pt 3

Date: Sun, 8 Sep 2002 09:34:05 -0400

X-Message-Number: 3

When You Need Treatment

Although our ideas are changing, the prevailing opinion today is that if

you have symptoms of PD and can live with the symptoms it’s best not to be

treated. However, data is accumulating about drugs that slow the rate of

progression of PD. Such drugs include the dopamine agonists Mirapex and

Requip and Co-enzyme Q-10. At present there is disagreement as to whether

the benefits in slowing the rate of progression of PD are so clear-cut

that all newly diagnosed PD patients should be started on Mirapex and

Requip or Co-enzyme Q-10 in high doses (1200 mg per day).

There’s agreement that when symptoms interfere with daily life treatment

should be started. The disagreement centers on when symptoms are severe

enough to interfere with daily life. The tremor that does not bother you

may be a major embarrassment to your friend. The common reasons people

with PD seek treatment are:

(1) Increasing tremor. Your tremor may interfere with your daily

activities or may be a major embarrassment to you socially or at work.

(2.) Slowness of movement. You may become so slow in your activities that

this imperils your work or makes it impossible for you to go without

help.

(3). Difficulty walking. Not being able to keep up with your partner. Or

an increased tendency to fall.

(4) Painful stiffness or rigidity of a major joint: the shoulder or hip.

Cramping of your arms or legs.

Dopamine Agonists as First Treatment

For people 60 years and younger who are diagnosed with PD and who need

treatment the first line drugs are the dopamine agonists, Mirapex and

Requip and Permax PD results from a loss of cells deep in the brain in a

region called the substantia nigra.

The cells in the substantia nigra are darkly pigmented and contain

dopamine. Indeed their dark pigment represents condensed molecules of

dopamine

The cells in the substantia nigra project to a region of the brain

called the striatum (so named because the region is striated or striped)

L-dopa or levodopa, a naturally occurring amino acid, similar to the amino

acid tyrosine, is changed inside the cells of the substantia nigra to

dopamine which is then transported upward through long processes of the

cells called axons

In the striatum dopamine is released and taken up by cells in the

striatum. The dopamine is released onto dopamine specialized receptors.

There are 2 kinds of receptors: the DA-1 and DA-2. The agonists stimulate

DA-2. Dopamine stimulates DA-1 and DA-2. This may make dopamine more

powerful but it also may result in dyskinesia. Drugs such as Requip,

Mirapex and Permax, like dopamine, can attach themselves to the receptors

and thus mimic the actions of dopamine. They are called dopamine mimetic

or dopamine agonists. A dopamine antagonist is a drug that blocks the

dopamine receptor (or antagonizes) it while an agonist is the opposite,

hence the name.

There is evidence that Mirapex and Requip, in addition to improving the

symptoms of PD, may slow the progression of PD. As PD progresses, the

cells in the substantia nigra drop-out and the remaining cells, like

factories, must work harder, to “pump†dopamine to the striatum. The

agonists mimic the actions of dopamine in the striatum: they do not need

the remaining dopamine cells to “pump†dopamine to the striatum. In order

for you and your doctor to make a logical decision as to whether this

information warrants a change in your treatment requires an understanding

of how the studies were done. Several questions will jump to mind.

Question 1. I was recently diagnosed with PD. I and my doctor do not

feel my symptoms are sufficiently troubling to warrant treatment. In

light of the new studies should I be placed on Mirapex or Requip even

though my symptoms are not sufficiently troubling to warrant treatment?

In the first study patients whose symptoms were sufficiently troubling to

require treatment were randomly and blindly assigned to either Mirapex or

Sinemet. The measure of PD progression used an imaging technique called

SPECT or single photon emission computed tomography. The SPECT study uses

an isotope abbreviated CIT that labels dopamine transporters. The

dopamine transporters are located on axons of dopamine cells. The axons

of these cells project to the striatum. SPECT measures the

radio-activity of the striatum by lighting up the dopamine transporters.

The fewer cells in the substantia nigra the less the distribution and

intensity of radio-activity.

In the second study patients whose symptoms were sufficiently troubling to

require treatment were randomly and blindly assigned to either Requip or

Sinemet. The measure of PD progression used an imaging technique called

PET or positron emission tomography. PET uses an isotope called

fluro-dopa. Fluro-dopa is transported up the substantia nigra axons into

the striatum. Here, fluro-dopa is taken up by the dopamine receptors on

nerve cells of the striatum. PET, like SPECT, measures the radio-activity

of the striatum. The fewer substantia nigra cells the less the

distribution and intensity of radio-activity. As, at present, there are

no direct comparisons between SPECT and PET, it cannot be said which is a

more accurate marker of the remaining substantia nigra cells. Both

studies compared the rate of progression of PD in a group of newly

diagnosed PD patients whose symptoms were sufficiently troubling to

require treatment. Although it’s reasonable to believe newly diagnosed

PD whose symptoms are NOT sufficiently troubling to warrant treatment will

also benefit, the potential benefit in slowing the disease progression

must be weighed against the side effects of Mirapex or Requip. This

issue must be discussed with your doctor.

Question 2. I have PD and my symptoms were sufficiently troubling to

start me on Sinemet. In light of the new data should I be changed to, or

should I add Mirapex or Requip to Sinemet?

In addition to the two recent studies, other studies were done comparing

Mirapex, Requip and Sinemet. In a 4 year study comparing Mirapex and

Sinemet, one separate from the SPECT study, 301 newly diagnosed PD

patients whose symptoms required treatment were randomly and blindly

assigned to treatment with either Mirapex or Sinemet. After 3 months

investigators were, if needed, allowed to add Sinemet to all patients.

After 4 years 25% of patients initially assigned to Mirapex had

dyskinesia (but only after supplemental Sinemet was added) versus 54% of

patients assigned to Sinemet. 54% of patients assigned to Mirapex had

“wearing off†versus 71% of patients assigned to Sinemet.

In a 5 year randomized trial of Requip versus Sinemet in 268 recently

diagnosed PD patients reported in the New England Journal of Medicine 2000

(volume 343, page 1484) whose symptoms required treatment and were

randomly and blindly assigned to treatment with either Requip and Sinemet.

After several months investigators were, if needed, allowed to add

Sinemet to all patients. After 5 years 20% of patients initially assigned

to Requip had dyskinesia (but only after Sinemet was added to Requip)

versus 45% of patients initially assigned to Sinemet. The improvement of

symptoms was comparable in patients initially assigned to Sinemet or

Requip. The dose of Requip was 16.5 mg per day. The dose of Sinemet was

427 mg per day.

Because of differences in the way patients were assigned to treatment in

the studies on Mirapex and Requip the results of the two studies cannot be

compared. Of the patients completing both studies and not dropping out

because of side effects or failure to comply with the terms of the study,

approximately 30% remained on Requip without Sinemet for 4 - 5 years.

Question 3 repeated. I have PD and my symptoms were sufficiently troubling

to start me

on Sinemet. In light of the new data should I be changed to, or should

I add Mirapex or Requip to Sinemet?

What will be done will be determined, in part, by your age. If you’re

60 years or less, most neurologists, before the new studies, started you

on an agonist because of the decreased likelihood of an agonist

precipitating “wearing-offâ€, “on-offâ€, or dyskinesia. With the new

studies, this trend will be accelerated.

If you’re 70 years or older, most neurologists will start you on

Sinemet. This is because

in 30% of PD patients 70 years or older, PD becomes associated with a

dementia. The dementia evolves slowly. Although the symptoms of dementia

are obvious when they appear, before they appear the underlying dementia

is “silent†and difficult to recognize. Often the first symptom of such a

“silent†dementia is the appearance of a psychosis: hallucinations,

delusions, agitation. The psychosis is often precipitated by drugs and the

agonists are more likely than Sinemet to do this. Because of this the

treatment of patients 70 years or older may not change because the desire

to slow disease progression may be less critical at age 70 years than the

fear of precipitating a psychosis, unmasking, temporarily, an underlying

dementia..

If you’re 60 - 69 years in light of the new studies, many neurologists

will start you

on Mirapex or Requip. Many will start you on Sinemet. In addition, if

you’re on Sinemet and having increased symptoms of PD, most neurologists

will now add Mirapex or Requip rather than increase Sinemet. Mirapex and

Requip will be added as much for their effect on the symptoms of PD as for

their effect on slowing disease progression. Although the possibility of

precipitating a psychosis, unmasking, temporarily, an underlying dementia

is less at age 60 - 69 than at age 70 years or older, this possibility

remains. In these patients the judgment of the neurologist as to which

drug to use will be critical.

*****************************************************

A MESSAGE FROM ASK THE DOCTOR

----------------------------------

The NPF supports research in more than 60 PD Centers

throughout the world.

The NPF maintains an extensive website, and updates it

several times each week with articles from PD journals.

Latest News: http://www.parkinson.org/whatsnew.htm

Meetings : http://www.parkinson.org/shallwemeet.htm

PD Tests : http://www.parkinson.org/tests.htm

Support : http://www.parkinson.org/support.htm

All of these services, articles, news, and columns

such as " Ask The Doctor " and " Ask the Dietitian " are

free.

We need your support to continue providing these

valuable services. Please make an online donation at

https://www.parkinson.org/reqform.htm

*****************************************************

ASKTHEDOCTOR Digest for Sunday, September 08, 2002.

1. Shaking Up your Doctor: Getting More From Your Visit

2. Shaking Up Your Doctor Part 2 The examination

3. Shaking Up Your Doctor When You Need Treatment Pt 3

4. Shaking Up Your Doctor Part 4 When You Need Sinemet

5. leg cramps

6. another question

7. Re: Neurologist vs a Parkinson or MDS specialist

8. Re: Cabergoline

9. Re: askthedoctor digest: September 07, 2002

10. Re: askthedoctor digest: September 07, 2002

11. Disappointing DBS Surgery

12. swelling

13. much needed advice

14. donations

15. generic sinemet

16. Parkinson's Walk

17. toes

18. Re: Ask the Doctor Sept 8, 2002

19. Re: askthedoctor digest: September 04, 2002

20. Post-traumatic stress syndrome

21. Shingles and PD?

22. Re: askthedoctor digest: September 07, 2002

23. Re: Shaking Up your Doctor: Getting More From Your Visit

24. Spheramine

25. comtan & Requip

26. Re: askthedoctor digest: September 07, 2002

----------------------------------------------------------------------

Subject: Shaking Up your Doctor: Getting More From Your Visit

Date: Sun, 8 Sep 2002 09:26:41 -0400

X-Message-Number: 1

What to Expect from your Visit and How to Prepare

Shaking Up Your Doctor: Getting More From Your Visit

Abraham Lieberman MD, Medical Director, National Parkinson Foundation

Introduction

When you visit your doctor, it’s a successful if on leaving you know

what’s wrong and what the doctor can do to make you better. The meeting

is less satisfying but still successful if upon leaving you don’t know

what’s wrong but the doctor has told you, in words you can understand, why

he (or she) doesn’t know what’s wrong, but can tell you what to do to find

out

The visit’s a failure if on leaving you don’t know what’s wrong, the

doctor can’t tell you what’s wrong, and he can’t tell you how to find

out. The meeting’s a failure if on leaving you’re more anxious,

depressed, and confused then before. To minimize such failures, ever more

common is an age of shorter visits, harried doctors, and more complicated

problems, there are things you can do. Start by asking yourself why

you’re seeing the doctor. If you can’t say “why” in a few words, he might

not be able to help. He’s a doctor, not a mind reader.

When you visit your doctor you’re probably anxious or depressed thinking:

“What’s wrong? Is it bad? Will the doctor know? Can he help?”

You may be angry (whether you realize it or not), thinking: “Why me? Why

do I have to be sick? Why do I have to see this doctor? And why do I

have to pay for the privilege?”

Don’t let your anger get the best of you. Thus, if after being diagnosed,

you don’t agree with or like the diagnosis, don’t “shoot the messenger:”

He may be wrong and deserve being shot, but he may be right! And,

sometime soon, you may need him. Remember, you not he has the problem,

and you not he needs help.

In Parkinson disease (PD) there are specific situations for which you

should prepare.

(1) When you’re diagnosed (2) When you need treatment. (3) When you

need L-dopa (4) When you’re anxious (5) When you’re depressed (6) When

you have difficulty thinking (7) When you’re not sure it’s PD

1. When You’re Diagnosed

If you think you have PD, or your family doctor thinks you have PD and

refers you to a specialist, these are some common questions:

How Do I Know If The Specialist Is Good?

If your family doctor picked the specialist your doctor has probably

worked with him (or her), knows his credentials, knows his abilities, and

knows how he deals with people. However, in an era where HMO’s and

insurance companies limit your choices, this may not be so. Ask your

family doctor, or the specialist (or the specialist’s office manager):

Is The Specialist A Neurologist?

To practice as a neurologist a doctor, an MD (medical doctor) or a DO (a

doctor of osteopathy) must complete an accredited 3 year neurology

training program.

Is The Neurologist Board Certified?

Upon completion of their training program, a neurologist takes first a

written and then an oral examination in Neurology and Psychiatry. For a

neurologist 75% of the questions are on Neurology and 25% are on

Psychiatry. For a psychiatrist 75% of the questions are on Psychiatry and

25% are on Neurology. Neurologists and psychiatrists, upon successful

completion of their examination, are notified by the American Board of

Psychiatry and Neurology as being certified in either Neurology or

Psychiatry. Certification by the Board attests to, but doesn’t guarantee,

competence. Board certification (as evidenced by a diploma) is like a

Good Housekeeping Seal. There are exceptions. The best neurologist I

knew was not Board certified, he couldn’t bother with the test.

Is The Neurologist A Movement Disorder Specialist?

Within the field of Neurology there are accredited (by separate Boards)

sub-specialties. Movement Disorders (which includes PD) is a

sub-specialty but is not accredited by a separate Board. Movement

Disorders includes PD (approximately 80% of the practice), the PD-like

disorders (Multiple System Atrophy, Progressive Supranuclear Palsy,

Corticobasilar Degeneration), Dystonia, Essential Tremor, Huntington

disease, Restless Legs, Tardive Dyskinesia, and Disease. To be

called a Movement Disorder specialist a neurologist must take a 1-3 year

fellowship in a Movement Disorder program after finishing his Neurology

training. Usually, the Movement Disorder specialist will display a

certificate attesting to his completion of the fellowship. If you do not

see such a certificate, ask where the specialist trained in Movement

Disorders. There are excellent neurologists who treat PD and did not

complete Movement Disorder fellowships. They, like all most Movement

Disorder specialists, belong to the Movement Disorder Society (MDS). The

MDS is an excellent organization but it is not a Good Housekeeping seal of

approval. Any neurologist, or researcher can belong if they pay an

annual fee.

Is The Movement Disorder Specialist Famous? Is He (or She) a Thought

Leader?

Does his (or her) name come up when you search for PD articles on Google,

or Medline, or the National Library of Medicine, or Scirus.com? Is he

(or she) listed in the “Best Doctors in America?” Is he (or she) on

television whenever there’s a “breaking” story on PD? Is he (or she)

J Fox’s, or Janet Reno’s, or the Pope’s doctor?

The above reveals the specialist is familiar with PD and it’s nuances.

But he or she may not be right for you. He (or she) may be too busy doing

research, writing articles, giving speeches, or traveling to see you when

you want to see him. Or, when you do get an appointment you may not see

him but one of his fellows or associates. And while he may be available

for J Fox, or Janet Reno, or the Pope, he may not be available

for you.

What Else Should I Do or Know?

Ask yourself, “Why am I seeing the doctor? What is my main problem,

complaint, concern?” Although you’re anxious, afraid, depressed, and

you may not remember everything you want to ask, try not to come with a

long list. A long list will make the doctor anxious and depressed. List

the 3 or 4 main problems, complaints, or concerns in their order of

importance to you. If you’re satisfied the doctor has answered your 3 or

4 main problems, complaints, or concerns, and there are others you want

the doctor (and not his staff) to answer, make a return appointment. .

If you’re going to see the doctor because you think you have PD, say

exactly what prompted you to come. The following are examples: “I think

I have PD because I have a tremor.” “My wife or a friend or another doctor

said he or she thought I might have PD.” “I saw Muhammad Ali, or

J Fox, or Janet Reno, or the Pope on television and I think I have what

they have.”

Bring a summary of your medical history including serious and chronic

illness, hospitalizations, surgeries, allergies, medications taken, family

and personal risks, occupational risks, lifestyle risks. If what you have

to talk about is difficult to discuss, practice how to bring it up. If

you expect bad news bring someone supportive with you.

On your first visit take a family member or friend. They will provide

you with emotional support and comfort. They’re more likely to be

objective and to hear what the specialist said rather than what you

thought he said. A word of caution: too many family members or friends

in the room, more than two, changes the nature of the visit If you have

small children get a baby sister: children may be frightened by being in a

doctor’s office, and they can cry and be disruptive.

Look for a courteous, caring, and polite staff. Look for a clean office.

Look for information on PD: books, pamphlets, and newsletters. Look for

nurse or an assistant to ask you to fill out a form regarding PD. Such a

form tells the specialist what he thinks is important. The questions

asked, the clarity with which they are asked, and the detail into which

they go into will give you an idea as to how the specialist thinks.

Waits of more than ½ hour are rarely justified. Before you visit ask if

the doctor goes to the hospital before seeing patients If he does this

may result in delays because of unforeseen emergencies If the doctor

goes to the hospital ask for an appointment on a day he does not go. If

you asked the doctor to “squeeze you in”, and he did, expect a delay. A

doctor who will see you as an emergency or as a favor will generally set a

time he can see you, or he will say, “I cannot fit you in but I can have

my associate or my colleague do so.”

----------------------------------------------------------------------

Subject: Shaking Up Your Doctor Part 2 The examination

Date: Sun, 8 Sep 2002 09:28:16 -0400

X-Message-Number: 2

The Examination

Although the diagnosis of PD may be apparent as soon as you walk-in, the

doctor should stifle the urge to make such a quick diagnosis To begin

with, the diagnosis may be incorrect, or if correct, disturbing and not

appreciated by you or your family. At the beginning of the illness, you

and your family are frightened and anxious. You have probably sensed

something is wrong but have denied or dismissed the symptoms. Now you and

your family are guilty and angry for not seeking help sooner. If then a

stranger, the doctor, rapidly point out the obvious, it succeeds only in

reinforcing your guilt and redirecting the anger toward – the doctor.

A recurrent theme of patients seeking another opinion is that the previous

doctor: “Didn’t

examine me or listen to me.” For a satisfactory doctor-patient

relationship to be established, the doctor must appear caring and

involved. He should take a careful history, conduct an examination, and

spending time with you and your family. After such a relationship has

been established, his diagnosis is more likely to be accepted and his

recommendations followed.

During the history, you may make a remark that confirms the diagnosis.

Statements such as the following are almost diagnostic of PD: “My hand

only begins to shake when I sit down” or

“My handwriting has gotten so small that the bank won’t cash my check”

It may become apparent to the doctor that you are not aware of any

difficulty either because of denial or because of your inability to sense

the difficulty. Although tremor and difficulty moving are prominent

symptoms in PD, there may also be perceptual, behavioral, and

personality changes that can interfere with your ability to recognize

your difficulties.

It may become apparent during the examination there is marital discord. A

spouse who constantly answers for you without being asked and makes

remarks such as: “He walks bent down like an ape” will not be the

sympathetic care-giver necessary for successful management. Marital

discord should be addressed. This is best done in a subsequent visit

after the doctor has a better understanding of your family dynamics.

It’s helpful if the doctor asks whether any family member or friend has

PD. If you have direct knowledge of someone who became bed-ridden

because of PD you will need reassurance that PD will not similarly affect

him.

The activities of daily living (ADL) of the Unified Parkinson Disease

Rating Scale (UPDRS) include speech, salivation, swallowing, handwriting,

cutting food and handling utensils, dressing, hygiene, turning in bed,

falling, freezing, walking, tremor, and sensory symptoms. The doctor or

his assistant’s review of your daily activities should not be reviewed

the way you review a laundry list. Careful and imaginative questioning is

always helpful.

You should be asked if there has been a change in your voice. Voice

implies difficulty with the mechanical rather than the linguistic aspects

of speech. An answer such as “yes, my voice seems to fade out at times

and people are always asking me to speak up” is almost diagnostic of PD.

You should be asked if you have recently noticed saliva escaping from the

corner of your mouth. This is a private symptom often apparent only to

you. The question usually elicits a reply such as “Yes, my pillow is wet

at night, but I didn’t mention it.” Although drooling may be a relatively

minor complaint, the symptom in the minds of many patients and families is

associated with dementia. You should be reassured that your drooling does

not mean you will “loose your mind.” Prominent swallowing difficulty

early in PD disease usually implies a PD-like disorder. Difficulty with

handwriting, cutting food, handling utensils, dressing, and hygiene to

some extent depends on whether your dominant hand is affected. If you

appear to be unaware of any difficulty with these tasks, the doctor may

ask you if your are slower in performing them. This question usually

elicits a response such as “Yes, but that isn’t anything, is it?”

It’s helpful for the doctor to obtain specimens of your handwriting and

compare them with past samples. This may show when your disease actually

began. In some people it’s reassuring to know they had PD for several

years before they were aware of their symptoms. This implies their PD is

progressing more slowly than they thought.

If your non-dominant hand is primarily affected, the questions should be

directed so as to include those activities you usually performed with that

hand. Thus if you’re right-handed with left-sided PD, you may be asked

how you buttons your shirt sleeves on your right side or how you wash your

right shoulder.

Patients rarely associate difficulty with turning in bed with a disease,

do not mention it, and are surprised when asked. Such questions provide

you with insight into the scope of your disease by making you realize that

symptoms as different as tremor, drooling, and difficulty turning in bed

are part of the same process.

The diagnosis of PD is made after taking a history (such as that

described above) and by performing an examination in the office. A

Movement Disorder specialist should be able to diagnose PD and be correct

85% of the time. Sometimes, because of unusual symptoms or because of

unusual finding on the examination the doctor may order an MRI-scan. An

MRI-scan does not diagnose PD. An MRI-scan can “rule-out” other

conditions that MAY mimic PD: hydrocephalus, small strokes, tumors.

Rarely a PET-scan (Positron Emission Tomography) using a special isotope

called fluro-dopa or a SPECT-scan (Single Photon Emission Computed

Tomography) using a special isotope may be necessary to confirm the

diagnosis. These tests are not available everywhere, require special

expertise in interpreting them, and are supplements not substitutes for an

examination by a Movement Disorder specialist.

The Stages of Parkinson Disease

In 1967, before L-dopa or levodopa, Sinemet, or the dopamine agonists, Drs

Margaret Hoehn and Melvin Yahr began rating people with PD on a 6-point

scale: 0, 1, 2, 3, 4, 5. In 1967, the Scale reflected the underlying

state of their PD. Sinemet and the agonists changed PD, symptoms

receded and became masked or hidden. Sinemet, however, doesn’t halt the

progression of PD. Thus, when you are rated, the rating reflects not

your underlying PD, but your outward appearance. To rate the underlying

PD state, Sinemet must be stopped for at least one month. For most

people this is impossible.

After 2 – 5 years many PD people fluctuate: your day consists of being

" ON " (Sinemet working) followed by being " OFF " (Sinemet not working). If

this is so you should be rated in both your " ON " and " OFF " state. The

Hoehn and Yahr Scale rates : mobility. It does not rate anxiety,

aberrant behavior, depression, dyskinesia, memory loss, difficulty

thinking, or difficulty swallowing. In many people with PD these symptoms

overshadow mobility. The Hoehn and Yahr Scale is NOT a Cancer Rating

Scale: it is not a guide to treatment and outlook. However, despite its

limits, the Scale has endured, attesting to its usefulness.

The Hoehn and Yahr Scale

You should note whether Sinemet is working, whether you are " ON " Or

whether Sinemet is NOT working, whether you are “OFF” The doctor will

select the Stage that best describes you:

0: No visible symptoms of PD.

1: Symptoms of PD confined to One-side of the body.

2: Symptoms on Both-sides of the body, NO difficulty walking.

3: Symptoms on Both-sides of the body, minimal difficulty walking.

4: Symptoms on Both-sides of the body, moderate difficulty walking.

5: Symptoms on Both-sides of the body, unable to walk.

The Hoehn and Yahr Scale, your handwriting, or symptoms such as

progressive curvature of the spine may be used to track the progression of

PD

----------------------------------------------------------------------

Subject: Shaking Up Your Doctor When You Need Treatment Pt 3

Date: Sun, 8 Sep 2002 09:34:05 -0400

X-Message-Number: 3

When You Need Treatment

Although our ideas are changing, the prevailing opinion today is that if

you have symptoms of PD and can live with the symptoms it’s best not to be

treated. However, data is accumulating about drugs that slow the rate of

progression of PD. Such drugs include the dopamine agonists Mirapex and

Requip and Co-enzyme Q-10. At present there is disagreement as to whether

the benefits in slowing the rate of progression of PD are so clear-cut

that all newly diagnosed PD patients should be started on Mirapex and

Requip or Co-enzyme Q-10 in high doses (1200 mg per day).

There’s agreement that when symptoms interfere with daily life treatment

should be started. The disagreement centers on when symptoms are severe

enough to interfere with daily life. The tremor that does not bother you

may be a major embarrassment to your friend. The common reasons people

with PD seek treatment are:

(1) Increasing tremor. Your tremor may interfere with your daily

activities or may be a major embarrassment to you socially or at work.

(2.) Slowness of movement. You may become so slow in your activities that

this imperils your work or makes it impossible for you to go without

help.

(3). Difficulty walking. Not being able to keep up with your partner. Or

an increased tendency to fall.

(4) Painful stiffness or rigidity of a major joint: the shoulder or hip.

Cramping of your arms or legs.

Dopamine Agonists as First Treatment

For people 60 years and younger who are diagnosed with PD and who need

treatment the first line drugs are the dopamine agonists, Mirapex and

Requip and Permax PD results from a loss of cells deep in the brain in a

region called the substantia nigra.

The cells in the substantia nigra are darkly pigmented and contain

dopamine. Indeed their dark pigment represents condensed molecules of

dopamine

The cells in the substantia nigra project to a region of the brain

called the striatum (so named because the region is striated or striped)

L-dopa or levodopa, a naturally occurring amino acid, similar to the amino

acid tyrosine, is changed inside the cells of the substantia nigra to

dopamine which is then transported upward through long processes of the

cells called axons

In the striatum dopamine is released and taken up by cells in the

striatum. The dopamine is released onto dopamine specialized receptors.

There are 2 kinds of receptors: the DA-1 and DA-2. The agonists stimulate

DA-2. Dopamine stimulates DA-1 and DA-2. This may make dopamine more

powerful but it also may result in dyskinesia. Drugs such as Requip,

Mirapex and Permax, like dopamine, can attach themselves to the receptors

and thus mimic the actions of dopamine. They are called dopamine mimetic

or dopamine agonists. A dopamine antagonist is a drug that blocks the

dopamine receptor (or antagonizes) it while an agonist is the opposite,

hence the name.

There is evidence that Mirapex and Requip, in addition to improving the

symptoms of PD, may slow the progression of PD. As PD progresses, the

cells in the substantia nigra drop-out and the remaining cells, like

factories, must work harder, to “pump” dopamine to the striatum. The

agonists mimic the actions of dopamine in the striatum: they do not need

the remaining dopamine cells to “pump” dopamine to the striatum. In order

for you and your doctor to make a logical decision as to whether this

information warrants a change in your treatment requires an understanding

of how the studies were done. Several questions will jump to mind.

Question 1. I was recently diagnosed with PD. I and my doctor do not

feel my symptoms are sufficiently troubling to warrant treatment. In

light of the new studies should I be placed on Mirapex or Requip even

though my symptoms are not sufficiently troubling to warrant treatment?

In the first study patients whose symptoms were sufficiently troubling to

require treatment were randomly and blindly assigned to either Mirapex or

Sinemet. The measure of PD progression used an imaging technique called

SPECT or single photon emission computed tomography. The SPECT study uses

an isotope abbreviated CIT that labels dopamine transporters. The

dopamine transporters are located on axons of dopamine cells. The axons

of these cells project to the striatum. SPECT measures the

radio-activity of the striatum by lighting up the dopamine transporters.

The fewer cells in the substantia nigra the less the distribution and

intensity of radio-activity.

In the second study patients whose symptoms were sufficiently troubling to

require treatment were randomly and blindly assigned to either Requip or

Sinemet. The measure of PD progression used an imaging technique called

PET or positron emission tomography. PET uses an isotope called

fluro-dopa. Fluro-dopa is transported up the substantia nigra axons into

the striatum. Here, fluro-dopa is taken up by the dopamine receptors on

nerve cells of the striatum. PET, like SPECT, measures the radio-activity

of the striatum. The fewer substantia nigra cells the less the

distribution and intensity of radio-activity. As, at present, there are

no direct comparisons between SPECT and PET, it cannot be said which is a

more accurate marker of the remaining substantia nigra cells. Both

studies compared the rate of progression of PD in a group of newly

diagnosed PD patients whose symptoms were sufficiently troubling to

require treatment. Although it’s reasonable to believe newly diagnosed

PD whose symptoms are NOT sufficiently troubling to warrant treatment will

also benefit, the potential benefit in slowing the disease progression

must be weighed against the side effects of Mirapex or Requip. This

issue must be discussed with your doctor.

Question 2. I have PD and my symptoms were sufficiently troubling to

start me on Sinemet. In light of the new data should I be changed to, or

should I add Mirapex or Requip to Sinemet?

In addition to the two recent studies, other studies were done comparing

Mirapex, Requip and Sinemet. In a 4 year study comparing Mirapex and

Sinemet, one separate from the SPECT study, 301 newly diagnosed PD

patients whose symptoms required treatment were randomly and blindly

assigned to treatment with either Mirapex or Sinemet. After 3 months

investigators were, if needed, allowed to add Sinemet to all patients.

After 4 years 25% of patients initially assigned to Mirapex had

dyskinesia (but only after supplemental Sinemet was added) versus 54% of

patients assigned to Sinemet. 54% of patients assigned to Mirapex had

“wearing off” versus 71% of patients assigned to Sinemet.

In a 5 year randomized trial of Requip versus Sinemet in 268 recently

diagnosed PD patients reported in the New England Journal of Medicine 2000

(volume 343, page 1484) whose symptoms required treatment and were

randomly and blindly assigned to treatment with either Requip and Sinemet.

After several months investigators were, if needed, allowed to add

Sinemet to all patients. After 5 years 20% of patients initially assigned

to Requip had dyskinesia (but only after Sinemet was added to Requip)

versus 45% of patients initially assigned to Sinemet. The improvement of

symptoms was comparable in patients initially assigned to Sinemet or

Requip. The dose of Requip was 16.5 mg per day. The dose of Sinemet was

427 mg per day.

Because of differences in the way patients were assigned to treatment in

the studies on Mirapex and Requip the results of the two studies cannot be

compared. Of the patients completing both studies and not dropping out

because of side effects or failure to comply with the terms of the study,

approximately 30% remained on Requip without Sinemet for 4 - 5 years.

Question 3 repeated. I have PD and my symptoms were sufficiently troubling

to start me

on Sinemet. In light of the new data should I be changed to, or should

I add Mirapex or Requip to Sinemet?

What will be done will be determined, in part, by your age. If you’re

60 years or less, most neurologists, before the new studies, started you

on an agonist because of the decreased likelihood of an agonist

precipitating “wearing-off”, “on-off”, or dyskinesia. With the new

studies, this trend will be accelerated.

If you’re 70 years or older, most neurologists will start you on

Sinemet. This is because

in 30% of PD patients 70 years or older, PD becomes associated with a

dementia. The dementia evolves slowly. Although the symptoms of dementia

are obvious when they appear, before they appear the underlying dementia

is “silent” and difficult to recognize. Often the first symptom of such a

“silent” dementia is the appearance of a psychosis: hallucinations,

delusions, agitation. The psychosis is often precipitated by drugs and the

agonists are more likely than Sinemet to do this. Because of this the

treatment of patients 70 years or older may not change because the desire

to slow disease progression may be less critical at age 70 years than the

fear of precipitating a psychosis, unmasking, temporarily, an underlying

dementia..

If you’re 60 - 69 years in light of the new studies, many neurologists

will start you

on Mirapex or Requip. Many will start you on Sinemet. In addition, if

you’re on Sinemet and having increased symptoms of PD, most neurologists

will now add Mirapex or Requip rather than increase Sinemet. Mirapex and

Requip will be added as much for their effect on the symptoms of PD as for

their effect on slowing disease progression. Although the possibility of

precipitating a psychosis, unmasking, temporarily, an underlying dementia

is less at age 60 - 69 than at age 70 years or older, this possibility

remains. In these patients the judgment of the neurologist as to which

drug to use will be critical.

----------------------------------------------------------------------

Subject: Shaking Up Your Doctor Part 4 When You Need Sinemet

Date: Sun, 8 Sep 2002 09:37:04 -0400

X-Message-Number: 4

When You Need L-Dopa (Levodopa, Sinemet)

Sinemet, a combination of two drugs: carbidopa plus levodopa, remains the

most potent drug for the treatment of PD. As people with PD live longer

(because treatment delays their becoming bed-bound) the side-effects of

treatment seem to over-shadow the benefits. When your doctor suggests

you start Sinemet, your first thought may be: “Isn’t Sinemet dangerous?

Isn’t it toxic?” Sinemet like any drug may be toxic in that it may have

side-effects. However, it is not toxic in the sense that it destroys or

poisons cells and makes PD worse. PD progresses, gets worse, because of

the underlying disease process, not because of L-dopa or Sinemet.

Next ask yourself whether you think Sinemet is toxic or dangerous or

whether you’re afraid to accept the fact that your PD has progressed and

you need additional treatment? It’s helpful and revealing but painful to

remind people with PD about the impact Sinemet has had on the main

symptoms of PD: tremor, rigidity, slowness of movement, and difficulty

walking. Before Sinemet more people with PD became totally bed-bound

(Stage 4 or 5 PD) in a shorter period of time than now.

Parkinson Disease Before Sinemet

In 1967, before L-dopa, before Sinemet, people diagnosed with PD lived on

average, 5 - 15 years from diagnosis to death. Death came as follows:

(1) People with PD, 5-15 years after being diagnosed became bed-bound.

Some developed difficulty swallowing and aspirated or swallowed food into

the lungs. This resulted in an aspiration pneumonia. The pneumonia

challenged the defenses in the lungs while the rigidity of PD restricted

the movement of the chest wall muscles, the muscles necessary to overcome

the pneumonia. As the pneumonia spread, it overwhelmed the body’s

defenses. Or the infection spread from the lungs to the blood and people

died of sepsis (blood poisoning).

(2) People with PD, 5-15 years after being diagnosed became bed-bound.

Unless they were turned in bed every hour, their skin broke down, they

developed pressure sores, the sores became infected, and the infection

spread. The person debilitated from PD lacked the will and the ability

to fight the infection and died.

The introduction first of L-dopa, then Sinemet changed everything.

People diagnosed with PD now live longer. Sinemet doesn’t “cure” PD, but

it postpones the day when people become bed-bound, and this in turn

postpones the complications of being bed-bound. Would any of us trade

these extra years for the side-effects of Sinemet?

As PD advances, as more cells are lost, the production and delivery of

dopamine from the cell “factories” in the nigra becomes more erratic,

less continuous, sporadic. This is related to continued loss of cell

“factories” in the nigra and to levodopa’s short duration of action.

Together they may be responsible for the “wearing-off”, “fading-out”, or

“turning-off” of an individual dose of Sinemet. To make-up for the

more erratic, less continuous delivery of dopamine from the cell

“factories” in the nigra, the receptors for dopamine on the cells in the

striatum become super-sensitive. Initially, the dose of Sinemet required

to relieve symptoms is less than that required to cause dyskinesia. As

PD progresses, as the delivery of levodopa becomes more erratic, less

continuous, as striatal cells become super-sensitive, the dose of Sinemet

required to relieve symptoms approaches that required to cause

dyskinesia.

Making Sinemet Last Longer

When Sinemet’s short duration of action was recognized and related, in

part, to “wearing-off”, “fading-out” or “turning-off” of individual doses

of Sinemet, attempts were made to prolong it’s action and make it’s

delivery to the brain less erratic, more continuous. By providing the

over-worked cell “factories” in the nigra with a more continuous delivery

of levodopa, the “factories”, although fewer in number, are able to

produce dopamine more continuously, similar to the way they produced

dopamine early in PD, during the Sinemet “honeymoon.”

Sinemet Controlled Release (Sinemet CR)

To overcome Sinemet’s short duration of action, Sinemet was embedded in a

specific matrix that delayed it’s absorption in the stomach and resulted

in a more prolonged delivery of an individual dose of Sinemet to the

brain. This form of Sinemet, Sinemet is called Sinemet controlled

release (Sinemet-CR). Sinemet-CR is available in two ratios: Sinemet-CR

50/200 which contains 50 mg of carbidopa and 200 mg of levodopa, and

Sinemet-CR 25/100 which contains 25 mg of carbidopa and 100 mg of

levodopa. Sinemet-CR had a modest effect on “wearing-off”, “fading out”,

and “turning-off” of an individual dose of Sinemet. Although the matrix

in which Sinemet was embedded delayed and prolonged the delivery of

levodopa from the stomach, the delivery remained erratic and was not

continuous. More-over, people who were on regular Sinemet complained

upon being changed to Sinemet-CR, that Sinemet-CR didn’t kick-in, and

often, when they were “off”, Sinemet-CR, unlike regular Sinemet, didn’t

turn them-on. This was related to the fact that regular Sinemet results

in a high pulse or peak of levodopa 30 - 60 minutes after taking an

individual dose. It is this high pulse or peak that results in the

feeling of Sinemet kicking-in and turning people on. The absence of a

high pulse or peak limited Sinemet-CR’s usefulness. In some people, the

benefits of Sinemet-CR could be realized, in part, by taking regular

Sinemet together with Sinemet-CR. The limitation in this approach were

that two separate tablets, regular Sinemet and Sinemet-CR, although

swallowed together were not absorbed together from the stomach, while

the high dose of levodopa that resulted from taking Sinemet and

Sinemet-CR together resulted in dyskinesia.

Selegiline or Eldepryl

Levodopa, the active part of Sinemet, is “broken-down” metabolized by

3 separate enzymes: dopa decarboxylase, COMT, and MAO-B. Carbidopa by

blocking dopa decarboxylase in the stomach and liver allows more

levodopa to leave the stomach and enter the brain. However, although

more levodopa leaves the stomach, it’s delivery to the brain remains

erratic and not continuous. Carbidopa decreased the nausea associated

with having too much dopamine produced in the stomach, carbdiopa allowed

more people to take less levodopa, but carbidopa did not result in less

“wearing off” and it did not result in less dyskinesia. MAO-B is an

enzyme present inside dopamine cells in the brain. By blocking or

inhibiting MAO-B, the dopamine formed from levodopa remains in place

longer. Eldepryl blocks or inhibits MAO-B.

Eldepryl, 5 mg twice a day, when added to Sinemet has a modest effect

on prolonging Sinemet ‘s duration of action and this in turn, has a mild

to modest effect on decreasing the “wearing off” of an individual dose of

Sinemet. In the late 1980s and early 1990s there was great interest in

Eldepryl because it was believed, incorrectly, that Eldepryl slowed the

progression of PD.

COMT is the most potent of the enzymes that break-down levodopa, and

blocking (inhibiting) COMT has the greatest effect on Sinemet:

prolonging it’s duration of action and resulting is a less erratic and

more continuous delivery of levodopa to the brain. COMT is present in

the stomach, liver, kidney, and brain. COMT also circulates in the blood.

Comtan which blocks or inhibits COMT has emerged as a safe and widely used

drug..

When Sinemet is given without Comtan most of the levodopa is changed by

stomach, liver, and circulating COMT to 3 methoxy-dopa (or 3-OMD).

3-OMD has no effect on PD, it acts as a reservoir or “sink” for levodopa.

Such a “sink” delays the action of Sinemet and results in a more

erratic and less continuous delivery of levodopa to the brain. Comtan by

inhibiting COMT outside the brain results in a more sustained level of

levodopa in the blood. Unlike Sinemet-CR, the peak effect of levodopa is

unchanged, so people who take Comtan with regular Sinemet feel themselves

“turning-on” as Sinemet “kicks-in.”

The more sustained, continuous, level of levodopa in the blood results and

in the brain results in a decrease in symptoms such as “wearing-off.”

This in turn results in the person experiencing more “on” time, more time

when his symptoms of PD are reduced or absent. For the most benefit

Comtan should be started early, when symptoms of “wearing-off” begin.

This could be when: (1) You’re thinking of switching from regular

Sinemet 3 times a day to regular Sinemet 4 times a day. (2) You’re

thinking of switching from Sinemet-CR 2 or 3 times a day to Sinemet-CR 3

or 4 times a day. (3)You wake-up in the morning and you immediately need

Sinemet (4) Your dose of Sinemet does not “kick-in.” (5) You need an

extra dose of Sinemet before you go out at night.

Comtan (200 mg) should be given with each dose of Sinemet up to 8 times

per day. Comtan can be used with regular Sinemet or Sinemet-CR. The dose

of Comtan (200 mg) does not change regardless of the number of Sinemet

tablets in each dose. Comtan when added to Sinemet when increase the side

effects of Sinemet such as dyskinesia, confusion, delusions and

hallucinations. If side-effects occur the simplest way to treat them is

to eliminate one or more of doses of Sinemet.

----------------------------------------------------------------------

Subject: leg cramps

Date: Sat, 7 Sep 2002 21:11:21 -0400

X-Message-Number: 5

question

dear dr.

are leg camps associated with pd? How can they be dealt with? My husband

has them in bed, when relaxed... He hadn't had any for many years...

thanks for your help. calif. partner...

answer

yes

please read the following

http://parkinson.org/parkpain.htm

----------------------------------------------------------------------

Subject: another question

Date: Sat, 7 Sep 2002 21:15:14 -0400

X-Message-Number: 6

questions

what is your opinion about ordering meds from canada, meds are sooo....

expensive here in US... thanks

answer

if you can get the meds you want at a cheaper price it's all to your

benefit long term remember the research that makes these drugs

available at all is done in the US prices are higher here because all

of us, in effect, subsidize Canada

abe lieberman

----------------------------------------------------------------------

Subject: Re: Neurologist vs a Parkinson or MDS specialist

Date: Sat, 7 Sep 2002 21:21:59 EDT

X-Message-Number: 7

question

I read with special interest the note from in NM who was looking for a

PD specialist. We too live in NM and I am the caregiver for my 72 yr. old

husband who has " advanced " LBD Parkinsonism. We feel we have a good

neurologist but I have often wondered if my husband could/would benefit

anything from seeing a PD specialist or going to Mayo or the parkinsons

institute in Phoenix?? Know this is a difficult question to answer - He is

currently taking 24 mg. of Requip a day, and is even having difficulty

walking w/ a walker, sleeps a lot etc.. I know things reach a point where

there really isn't much else that can be done but want to make sure we have

left " no stones unturned " that might help.

Any comments are greatly appreciated. THANKS

AEWID@...

answer

you can always benefit from another opinion by a good doctor

abe lieberman

----------------------------------------------------------------------

Subject: Re: Cabergoline

Date: Sun, 8 Sep 2002 00:17:28 -0400

X-Message-Number: 8

question

Thank you for your prompt answer Dr. Lieberman. Would you say then that =

even if cabergoline has a longer half life it does not really make a diff=

erence? Would it be the same as if taking Mirapex or Requip? Thank you.

answer

i did the original studies on cabergoline in the united states it is

a good drug

i did the original studies on mirapex and requip in the united states

they are better drugs

abe lieberman

----------------------------------------------------------------------

Subject: Re: askthedoctor digest: September 07, 2002

Date: Sun, 8 Sep 2002 08:35:48 EDT

X-Message-Number: 9

question

Dear Dr. Leiberman, I did what you told me to do and there was no website

for it. Do you happen to know a p.d. specialist in the Pgh area? I hit

http://wwwparkinson.org/docgetmap.HTM and nothing happened. Gloria

answer

check this with your provider if you have aol amoung providers you will not be

able to get the map

B. Jozefczyk, MD. MDS

2276 Sidgefield Lane

Pittsburgh, PA 15241

4126924600

Baser, MD.

4919 Ashbaugh Road

Pittsburgh, PA 15568

Hassan Hassouri, MD.

University of Pittsburgh

1 Alleghany Square

Pittsburgh, PA 15212

4123214603

Y. , MD., Zigmond, MD.

University of Pittsburgh- NPF Center of Excellence

3471 Fifth Ave

Ste 810

Pittsburgh, PA 15213

abe lieberman

----------------------------------------------------------------------

Subject: Re: askthedoctor digest: September 07, 2002

Date: Sun, 8 Sep 2002 08:17:38 EDT

X-Message-Number: 10

question

Could you please give me the name of a good pd neurologist in

Binghamton,New York area .

Thank you so much for being

here.

answer

i would go to either albany or syracuse

http://www.parkinson.org/docgetmap.htm

dr factor in albany

the university hospital in syracuse

abe lieberman

----------------------------------------------------------------------

Subject: Disappointing DBS Surgery

Date: Sun, 8 Sep 2002 08:19:37 -0400

X-Message-Number: 11

question

My 72 yr. old mother was diagnosed with PD 8 yrs. ago. Her symptoms were

not very severe, consisting almost exclusively of tremors and eventually

some joint stiffness. As the tremors were becoming more bothersome, she

decided to go through with one-sided DBS surgery in April, 2002. The

surgeon in Sweden, where she had it done, was the first to perform this

procedure over there and had since done over 200 DBS operations before my

mother.

Her surgery recovery was complicated by a staph infection that had gone

undetected. Immediately after the procedure, she was hospitalized with

urinary tract and blood infection. As a result adjustments were delayed.

Having recovered from the infections and having had several adjustments

since the surgery, things are worse than they were before all of this. The

tremors are worse than ever, she has developed depression, and is overly

sensitive to heat and water. She was trying to take a hot bath but felt so

bad that she is now opting for cool showers.

My question is if these symptoms are just a function of the adjustments

and might be eliminated through correction? Or is she just part of the

small percentage of surgeries that are not considered successful? We had

great hopes for this surgery, now we would at least like to be able to get

her back to where she was! Any suggestions and information would be

greatly appreciated. Thank you.

Ann-Mari Grisham

answer

inherent in any surgery are complications these occur at the best places

with stringent precautions they are more common in older people whether the

surgery failed in your mother because of the mulitiple infections because the

adjustments were not made or because the electrode is not in its proper place i

cannot say my recommendation is that

if she lives in the US she go to a place in the US with a large experience in

DBS such as the cleveland clinic in cleveland or the university of kansas

abe lieberman

----------------------------------------------------------------------

Subject: swelling

Date: Sun, 8 Sep 2002 13:09:25 -0700

X-Message-Number: 12

question

dear dr. leibermann=20

i was diagnosed with parkinsons in may =

this year at present i am taking 6 mg requip 2mgx 3times a day. i also =

have highbloodpressure and reflux and hegh cholestrol level and i am =

taking 20mg enalapril 10mg losec 2.5 mg bendrofluazide and 20mg of =

simvastatin each 1 per day. the parkinsons has affected me down theright =

side and recently i have been experiencing swelling in my right foot and =

hand quite severe in my right foot enough to cause quite severe =

discomfort in my foot do u think this is caused by my parkinsons or =

something else . i would be grateful forany help thanking u in advance . =

i think u do a wonderful job and god bless u to keep up the good work =

doreen

answer

the agonists mirapex requip and permax can cause such swelling

even beginning on one side more than the other

please read the following

http://www.parkinson.org/dopamine.htm

----------------------------------------------------------------------

Subject: much needed advice

Date: Sun, 8 Sep 2002 09:00:53 -0400

X-Message-Number: 13

question

My father takes sinemet 50/200 every three hours for a total of 7 doses a

day. He is also taking Requip and up to 2.5 X 3. He was hospitalized due

to sudden nighttime incontinence. The urologist started him on

Detrol(which helped with the incontinence) and although his prostate is

fine he placed him on Flowmax because my dad is up 6 to 9 times during the

night to urintate!! They also started him on Trazadone as high at 150mg,

in the hospital, with the thought that this would help him get a good

nights sleep... but he still wakes to go to the bathroom.

Many times it is just an urge to go, but his is awakened each time all the

same. My Mom has spoken with his current Neurologist(not a specialist in

Parkinson's) and she says that she feels that the DBS will help, but he

does not have an appointment with Dr. Pahwa at KU Med until Oct. 8 and has

been told that if he qualifies for the surgery it would not be until

around Jan. that it could be done.

Is there anything you can suggest? (manipualtion of current meds, new

meds, questions to ask the doctor, anything???) January is a long time off

and although, it seems like such a minor thing to most, Dad is now to

unsteady during the night to go to the bathroom alone, so Mom is having to

go with him. These frequent trips are REALLY taking a toll on her. They

are both in their 70's and they are not getting much sleep at all. If

something happens to her I do not know what we will do. I help as much as

I can, but have two little ones so taking the " night shift " is a problem.

Thank you so very much!!!

answer

the dbs may improve his mobility it will not help with the bladder problem

the control of the bladder will not be affected by the dbs

be certain you have clarified this with the doctors

without seeing and examining your father i cannot answer specifically

the simplest thing is to get a bed side commode

and have someone other than your mother stay with your father on some nights to

give your mother a rest these are the most helpful things

you can do more helpful than trying to manipulate drugs which have

already been artfully manipulated

abe lieberman

----------------------------------------------------------------------

Subject: donations

Date: Sun, 08 Sep 2002 09:13:29 -0400

X-Message-Number: 14

question

We presently donate to a charitable organization that automatically

deducts $25 per month directly from our checking account. Now that 2 of

the large PD organizations are merging, we want to be even more

supportive financially of them, and wonder if there is a way to have

that type of deduction taken automatically. I would imagine that many

people would donate if that arrangement were available. We can't afford

more than that, but if every PD family donated $25 per month, surely

that would be a great help. What do you think?

answer

if 10% of the 25,000 people who each day use ASK THE DOCTOR or ASK THE

SURGEON or ASK THE DIETITIAN gave us $25 a month we would have

62,500 a month our website gets less than a tenth of that

if we had this for one year we would have 750,000 per year and we

could almost double our peer reviewed research grants for innovative

research

would that this happened

we would come up with a plan to make it easier for you to donate

monthly to THE PARKINSON FOUNDATION

abe lieberman

----------------------------------------------------------------------

Subject: generic sinemet

Date: Sun, 8 Sep 2002 18:32:08 -0400

X-Message-Number: 15

Dear Dr. Lieberman:

My wife (PWP) was recently hospitalized under care of an internist. When

the nurse brought the Sinemet CR 50/200 the first time, I noticed it was

slightly different. The nurse said it was generic (from the hospital

pharmacy). I stated firmly that our patient’s neurologist had instructed

us not to use generic Sinemet. We used our own Sinemet from that point

on.

The tablet in question is a unit dose in blister package, marked:

“PKG. BY UDL, ROCKFORD, IL. " The tablet is a gray color. It may be all

right for some patients, but not for my wife. Checking other websites,

UDL has had three recalls of other med products in the past twenty months.

We Caregivers have to stay alert.

----------------------------------------------------------------------

Subject: Parkinson's Walk

Date: Sun, 8 Sep 2002 10:14:04 EDT

X-Message-Number: 16

Hi Dr. Lieberman,

Is there a place where I can post this?

Hello Readers,

I've been writing to Dr. Lieberman for a couple of months, ever since my

mother was diagnosed with Parkinson's. We all know how devastating this

disease is.

I will be walking in Long Island, NY in a Parkinson's fundraiser on Saturday,

Sept 28 of this year. My fundraising is in honor of my mother, and for all

the afflicted, incredible loved ones for their strength and perserverance and

heart in dealing with Parkinson's . The money will be going toward

Parkinson's research. Anybody who would like to make a pledge to the cause

can write a check out to:

American Parkinson Disease Association, Inc. (please use my name on the memo

of your check so I can have it tallied in my pledge account) and send it

directly to the foundation at :

ADPA Information and Referral Center

C/o NYCOM/NYIT

PO Box 8000

Old Westbury, NY 11568.

Any contribution would be GREATLY appreciated. Anybody who is interested in

mailing it directly to me, or has any questions, please email me at

Jsavitzky@....

Thanks,

Jill Savitzky

----------------------------------------------------------------------

Subject: toes

Date: Sun, 8 Sep 2002 10:40:27 EDT

X-Message-Number: 17

question

i am a patient with newly diagonosed p.d.

sometime my toes go under and have a hard time trying to straightenening

them ,is this normal with pd.

thank you

sandie

answer

yes

this is usually a symptom of under medication

abe lieberman

----------------------------------------------------------------------

Subject: Re: Ask the Doctor Sept 8, 2002

Date: Sun, 8 Sep 2002 09:45:44 -0500

X-Message-Number: 18

Breeden M.D. of Farmington,NM is the first and finest neurologist

I've seen in my twenty years with parkinsons.

----------------------------------------------------------------------

Subject: Re: askthedoctor digest: September 04, 2002

Date: Sun, 8 Sep 2002 12:33:22 EDT

X-Message-Number: 19

question

Dear DR Lieberman,

Would you please give me the name of a good neurologist in the Muskegon or

Grand Rapids, Michigan area.

Thank you, Lorraine

answer

please click onto the following

http://www.parkinson.org/docgetmap.htm

----------------------------------------------------------------------

Subject: Post-traumatic stress syndrome

Date: Sun, 8 Sep 2002 13:38:25 -0400

X-Message-Number: 20

question

Is there a causal link between pst-traumatic stress syndrome and

Parkinson's Disease?

answer

to my knowledge there is not

abe lieberman

----------------------------------------------------------------------

Subject: Shingles and PD?

Date: Sun, 8 Sep 2002 11:10:59 -0700

X-Message-Number: 21

question

Had shingles about 5 years ago, dx with PD 3 years ago. Felt since

having the shingles, the PD symptoms started. Has there been any

research into the virus of shingles causing PD? Read your Digest every

day and thank you for being there for all of us.

answer

as we do not know the cause of pd a viral infection remains an option however

at present there is no evidence that infection with shingles or chicken pox

(it's the same virus) is a cause of pd

abe lieberman

mswer

----------------------------------------------------------------------

Subject: Re: askthedoctor digest: September 07, 2002

Date: Sun, 8 Sep 2002 15:45:27 -0400

X-Message-Number: 22

question

We also live in the Binghamton area, and are considering Syracuse, Albany

and Rochester. We have been leaning toward Rochester because there is a

PD Center of Excellence there. In your Opinion, would that be beneficial?

answer

the center in rochester is one of the best in the world

abe lieberman

----------------------------------------------------------------------

Subject: Re: Shaking Up your Doctor: Getting More From Your Visit

Date: Sun, 8 Sep 2002 16:27:12 EDT

X-Message-Number: 23

From a reader

What wonderful, comprehensive and sensitive lessons for both patient and

doctor of any disease. It should be required reading for all.

One thing that I found helpful when visiting the doctor with my husband, was

to bring a written report as well as questions. I did this by keeping a diary

on the computer of his symptoms and behaviors and then compressing this into

a short typed report. I gave the doctor a copy as he began the visit which he

read, usually without comment. As he conducted the examination he often

referred to my notes or asked questions that were obviously triggered by what

I had written. The doctor's questions were directed to my husband which

forced him to be more involved with his treatment. It allowed the doctor to

cover all of my points of concern at his speed and sequence. It also made

sure that I did not forget important details. I followed along and noted on

my copy the doctor's comments and suggestions since these are easily

forgotten afterward. Keeping this history in a binder made it easy to give a

concise and accurate report of the progression, treatment and drug reactions

to the various specialists we saw.

So grateful for this forum and wish it had been available when I so

desperately needed it.

answer

thank you for your kind comments it took a great effort to write it

and comments such as yours make me realize it was worth the time and effort

abe lieberman

----------------------------------------------------------------------

Subject: Spheramine

Date: Sun, 8 Sep 2002 17:31:24 EDT

X-Message-Number: 24

question

Dr Lieberman:

Yesterday's dietician digest mentioned a product

being tested in the UK called Spheramine. Do you know much

about this product.

answer

please click on below

http://www.titanpharm.com/press/Spheramine-PhaseII.html

----------------------------------------------------------------------

Subject: comtan & Requip

Date: Sun, 8 Sep 2002 16:36:45 -0400

X-Message-Number: 25

question

Dr. Leiberman,

Is the amount of Comtan ever increased? And if so, what would be a reason

for increasing the amount? Are there any negative consequences to

increasing the dosage?

answer

if the initial dose 200 mg with each dose of sinemet does not help with

wearing off i personally increase the dose to 400 mg it sometimes helps

this however must be discussed with your doctor

Also, when increasing Requip... how often do you increase the amount and

how do you know when you have reached the required amount for your body?

Do you just look for dyskinesia or are there other symptoms to indicate

that you should not increase any further?

answer

there is no set rule it depends on you and your doctor

abe lieberman

----------------------------------------------------------------------

Subject: Re: askthedoctor digest: September 07, 2002

Date: Sun, 8 Sep 2002 17:51:10 EDT

X-Message-Number: 26

This is for Jim who wrote asking about a parkinson's specialist in New

Mexico. I have had PD for almost 12 years and have been delighted with the

treatment I have received from Dr. Doulgas Barrett, Southwest Medical

Associates in Albuquerque, . Dr. Barrettt is a board-certified

neurologist. Good luck, Harry

---

END OF DIGEST

****************************************************

You are currently subscribed to askthedoctor as: fvjames@...

To unsubscribe send a blank email to leave-askthedoctor-38867W@...

Shaking Up Parkinson Disease - The book By Dr. Abraham Lieberman " ..shows how

patients at all stages of the disease can maintain their quality of life. " The

Book also supplies info on PD: how it's recognized, what causes it, who gets it,

when and how to get help, and much more. All Royalties are donated to the

National Parkinson Foundation. Get your copy today, by ordering online at

http://www.parkinson.org/bookfaq.htm

***************END OF DIGEST*************************

Link to comment
Share on other sites
Guest guest

Guest guest

Posted
Posted

Subject: Shaking Up Your Doctor Part 4 When You Need Sinemet

Date: Sun, 8 Sep 2002 09:37:04 -0400

X-Message-Number: 4

When You Need L-Dopa (Levodopa, Sinemet)

Sinemet, a combination of two drugs: carbidopa plus levodopa, remains the

most potent drug for the treatment of PD. As people with PD live longer

(because treatment delays their becoming bed-bound) the side-effects of

treatment seem to over-shadow the benefits. When your doctor suggests

you start Sinemet, your first thought may be: “Isn’t Sinemet dangerous?

Isn’t it toxic?†Sinemet like any drug may be toxic in that it may have

side-effects. However, it is not toxic in the sense that it destroys or

poisons cells and makes PD worse. PD progresses, gets worse, because of

the underlying disease process, not because of L-dopa or Sinemet.

Next ask yourself whether you think Sinemet is toxic or dangerous or

whether you’re afraid to accept the fact that your PD has progressed and

you need additional treatment? It’s helpful and revealing but painful to

remind people with PD about the impact Sinemet has had on the main

symptoms of PD: tremor, rigidity, slowness of movement, and difficulty

walking. Before Sinemet more people with PD became totally bed-bound

(Stage 4 or 5 PD) in a shorter period of time than now.

Parkinson Disease Before Sinemet

In 1967, before L-dopa, before Sinemet, people diagnosed with PD lived on

average, 5 - 15 years from diagnosis to death. Death came as follows:

(1) People with PD, 5-15 years after being diagnosed became bed-bound.

Some developed difficulty swallowing and aspirated or swallowed food into

the lungs. This resulted in an aspiration pneumonia. The pneumonia

challenged the defenses in the lungs while the rigidity of PD restricted

the movement of the chest wall muscles, the muscles necessary to overcome

the pneumonia. As the pneumonia spread, it overwhelmed the body’s

defenses. Or the infection spread from the lungs to the blood and people

died of sepsis (blood poisoning).

(2) People with PD, 5-15 years after being diagnosed became bed-bound.

Unless they were turned in bed every hour, their skin broke down, they

developed pressure sores, the sores became infected, and the infection

spread. The person debilitated from PD lacked the will and the ability

to fight the infection and died.

The introduction first of L-dopa, then Sinemet changed everything.

People diagnosed with PD now live longer. Sinemet doesn’t “cure†PD, but

it postpones the day when people become bed-bound, and this in turn

postpones the complications of being bed-bound. Would any of us trade

these extra years for the side-effects of Sinemet?

As PD advances, as more cells are lost, the production and delivery of

dopamine from the cell “factories†in the nigra becomes more erratic,

less continuous, sporadic. This is related to continued loss of cell

“factories†in the nigra and to levodopa’s short duration of action.

Together they may be responsible for the “wearing-offâ€, “fading-outâ€, or

“turning-off†of an individual dose of Sinemet. To make-up for the

more erratic, less continuous delivery of dopamine from the cell

“factories†in the nigra, the receptors for dopamine on the cells in the

striatum become super-sensitive. Initially, the dose of Sinemet required

to relieve symptoms is less than that required to cause dyskinesia. As

PD progresses, as the delivery of levodopa becomes more erratic, less

continuous, as striatal cells become super-sensitive, the dose of Sinemet

required to relieve symptoms approaches that required to cause

dyskinesia.

Making Sinemet Last Longer

When Sinemet’s short duration of action was recognized and related, in

part, to “wearing-offâ€, “fading-out†or “turning-off†of individual doses

of Sinemet, attempts were made to prolong it’s action and make it’s

delivery to the brain less erratic, more continuous. By providing the

over-worked cell “factories†in the nigra with a more continuous delivery

of levodopa, the “factoriesâ€, although fewer in number, are able to

produce dopamine more continuously, similar to the way they produced

dopamine early in PD, during the Sinemet “honeymoon.â€

Sinemet Controlled Release (Sinemet CR)

To overcome Sinemet’s short duration of action, Sinemet was embedded in a

specific matrix that delayed it’s absorption in the stomach and resulted

in a more prolonged delivery of an individual dose of Sinemet to the

brain. This form of Sinemet, Sinemet is called Sinemet controlled

release (Sinemet-CR). Sinemet-CR is available in two ratios: Sinemet-CR

50/200 which contains 50 mg of carbidopa and 200 mg of levodopa, and

Sinemet-CR 25/100 which contains 25 mg of carbidopa and 100 mg of

levodopa. Sinemet-CR had a modest effect on “wearing-offâ€, “fading outâ€,

and “turning-off†of an individual dose of Sinemet. Although the matrix

in which Sinemet was embedded delayed and prolonged the delivery of

levodopa from the stomach, the delivery remained erratic and was not

continuous. More-over, people who were on regular Sinemet complained

upon being changed to Sinemet-CR, that Sinemet-CR didn’t kick-in, and

often, when they were “offâ€, Sinemet-CR, unlike regular Sinemet, didn’t

turn them-on. This was related to the fact that regular Sinemet results

in a high pulse or peak of levodopa 30 - 60 minutes after taking an

individual dose. It is this high pulse or peak that results in the

feeling of Sinemet kicking-in and turning people on. The absence of a

high pulse or peak limited Sinemet-CR’s usefulness. In some people, the

benefits of Sinemet-CR could be realized, in part, by taking regular

Sinemet together with Sinemet-CR. The limitation in this approach were

that two separate tablets, regular Sinemet and Sinemet-CR, although

swallowed together were not absorbed together from the stomach, while

the high dose of levodopa that resulted from taking Sinemet and

Sinemet-CR together resulted in dyskinesia.

Selegiline or Eldepryl

Levodopa, the active part of Sinemet, is “broken-down†metabolized by

3 separate enzymes: dopa decarboxylase, COMT, and MAO-B. Carbidopa by

blocking dopa decarboxylase in the stomach and liver allows more

levodopa to leave the stomach and enter the brain. However, although

more levodopa leaves the stomach, it’s delivery to the brain remains

erratic and not continuous. Carbidopa decreased the nausea associated

with having too much dopamine produced in the stomach, carbdiopa allowed

more people to take less levodopa, but carbidopa did not result in less

“wearing off†and it did not result in less dyskinesia. MAO-B is an

enzyme present inside dopamine cells in the brain. By blocking or

inhibiting MAO-B, the dopamine formed from levodopa remains in place

longer. Eldepryl blocks or inhibits MAO-B.

Eldepryl, 5 mg twice a day, when added to Sinemet has a modest effect

on prolonging Sinemet ‘s duration of action and this in turn, has a mild

to modest effect on decreasing the “wearing off†of an individual dose of

Sinemet. In the late 1980s and early 1990s there was great interest in

Eldepryl because it was believed, incorrectly, that Eldepryl slowed the

progression of PD.

COMT is the most potent of the enzymes that break-down levodopa, and

blocking (inhibiting) COMT has the greatest effect on Sinemet:

prolonging it’s duration of action and resulting is a less erratic and

more continuous delivery of levodopa to the brain. COMT is present in

the stomach, liver, kidney, and brain. COMT also circulates in the blood.

Comtan which blocks or inhibits COMT has emerged as a safe and widely used

drug..

When Sinemet is given without Comtan most of the levodopa is changed by

stomach, liver, and circulating COMT to 3 methoxy-dopa (or 3-OMD).

3-OMD has no effect on PD, it acts as a reservoir or “sink†for levodopa.

Such a “sink†delays the action of Sinemet and results in a more

erratic and less continuous delivery of levodopa to the brain. Comtan by

inhibiting COMT outside the brain results in a more sustained level of

levodopa in the blood. Unlike Sinemet-CR, the peak effect of levodopa is

unchanged, so people who take Comtan with regular Sinemet feel themselves

“turning-on†as Sinemet “kicks-in.â€

The more sustained, continuous, level of levodopa in the blood results and

in the brain results in a decrease in symptoms such as “wearing-off.â€

This in turn results in the person experiencing more “on†time, more time

when his symptoms of PD are reduced or absent. For the most benefit

Comtan should be started early, when symptoms of “wearing-off†begin.

This could be when: (1) You’re thinking of switching from regular

Sinemet 3 times a day to regular Sinemet 4 times a day. (2) You’re

thinking of switching from Sinemet-CR 2 or 3 times a day to Sinemet-CR 3

or 4 times a day. (3)You wake-up in the morning and you immediately need

Sinemet (4) Your dose of Sinemet does not “kick-in.†(5) You need an

extra dose of Sinemet before you go out at night.

Comtan (200 mg) should be given with each dose of Sinemet up to 8 times

per day. Comtan can be used with regular Sinemet or Sinemet-CR. The dose

of Comtan (200 mg) does not change regardless of the number of Sinemet

tablets in each dose. Comtan when added to Sinemet when increase the side

effects of Sinemet such as dyskinesia, confusion, delusions and

hallucinations. If side-effects occur the simplest way to treat them is

to eliminate one or more of doses of Sinemet.

*****************************************************

A MESSAGE FROM ASK THE DOCTOR

----------------------------------

The NPF supports research in more than 60 PD Centers

throughout the world.

The NPF maintains an extensive website, and updates it

several times each week with articles from PD journals.

Latest News: http://www.parkinson.org/whatsnew.htm

Meetings : http://www.parkinson.org/shallwemeet.htm

PD Tests : http://www.parkinson.org/tests.htm

Support : http://www.parkinson.org/support.htm

All of these services, articles, news, and columns

such as " Ask The Doctor " and " Ask the Dietitian " are

free.

We need your support to continue providing these

valuable services. Please make an online donation at

https://www.parkinson.org/reqform.htm

*****************************************************

ASKTHEDOCTOR Digest for Sunday, September 08, 2002.

1. Shaking Up your Doctor: Getting More From Your Visit

2. Shaking Up Your Doctor Part 2 The examination

3. Shaking Up Your Doctor When You Need Treatment Pt 3

4. Shaking Up Your Doctor Part 4 When You Need Sinemet

5. leg cramps

6. another question

7. Re: Neurologist vs a Parkinson or MDS specialist

8. Re: Cabergoline

9. Re: askthedoctor digest: September 07, 2002

10. Re: askthedoctor digest: September 07, 2002

11. Disappointing DBS Surgery

12. swelling

13. much needed advice

14. donations

15. generic sinemet

16. Parkinson's Walk

17. toes

18. Re: Ask the Doctor Sept 8, 2002

19. Re: askthedoctor digest: September 04, 2002

20. Post-traumatic stress syndrome

21. Shingles and PD?

22. Re: askthedoctor digest: September 07, 2002

23. Re: Shaking Up your Doctor: Getting More From Your Visit

24. Spheramine

25. comtan & Requip

26. Re: askthedoctor digest: September 07, 2002

----------------------------------------------------------------------

Subject: Shaking Up your Doctor: Getting More From Your Visit

Date: Sun, 8 Sep 2002 09:26:41 -0400

X-Message-Number: 1

What to Expect from your Visit and How to Prepare

Shaking Up Your Doctor: Getting More From Your Visit

Abraham Lieberman MD, Medical Director, National Parkinson Foundation

Introduction

When you visit your doctor, it’s a successful if on leaving you know

what’s wrong and what the doctor can do to make you better. The meeting

is less satisfying but still successful if upon leaving you don’t know

what’s wrong but the doctor has told you, in words you can understand, why

he (or she) doesn’t know what’s wrong, but can tell you what to do to find

out

The visit’s a failure if on leaving you don’t know what’s wrong, the

doctor can’t tell you what’s wrong, and he can’t tell you how to find

out. The meeting’s a failure if on leaving you’re more anxious,

depressed, and confused then before. To minimize such failures, ever more

common is an age of shorter visits, harried doctors, and more complicated

problems, there are things you can do. Start by asking yourself why

you’re seeing the doctor. If you can’t say “why” in a few words, he might

not be able to help. He’s a doctor, not a mind reader.

When you visit your doctor you’re probably anxious or depressed thinking:

“What’s wrong? Is it bad? Will the doctor know? Can he help?”

You may be angry (whether you realize it or not), thinking: “Why me? Why

do I have to be sick? Why do I have to see this doctor? And why do I

have to pay for the privilege?”

Don’t let your anger get the best of you. Thus, if after being diagnosed,

you don’t agree with or like the diagnosis, don’t “shoot the messenger:”

He may be wrong and deserve being shot, but he may be right! And,

sometime soon, you may need him. Remember, you not he has the problem,

and you not he needs help.

In Parkinson disease (PD) there are specific situations for which you

should prepare.

(1) When you’re diagnosed (2) When you need treatment. (3) When you

need L-dopa (4) When you’re anxious (5) When you’re depressed (6) When

you have difficulty thinking (7) When you’re not sure it’s PD

1. When You’re Diagnosed

If you think you have PD, or your family doctor thinks you have PD and

refers you to a specialist, these are some common questions:

How Do I Know If The Specialist Is Good?

If your family doctor picked the specialist your doctor has probably

worked with him (or her), knows his credentials, knows his abilities, and

knows how he deals with people. However, in an era where HMO’s and

insurance companies limit your choices, this may not be so. Ask your

family doctor, or the specialist (or the specialist’s office manager):

Is The Specialist A Neurologist?

To practice as a neurologist a doctor, an MD (medical doctor) or a DO (a

doctor of osteopathy) must complete an accredited 3 year neurology

training program.

Is The Neurologist Board Certified?

Upon completion of their training program, a neurologist takes first a

written and then an oral examination in Neurology and Psychiatry. For a

neurologist 75% of the questions are on Neurology and 25% are on

Psychiatry. For a psychiatrist 75% of the questions are on Psychiatry and

25% are on Neurology. Neurologists and psychiatrists, upon successful

completion of their examination, are notified by the American Board of

Psychiatry and Neurology as being certified in either Neurology or

Psychiatry. Certification by the Board attests to, but doesn’t guarantee,

competence. Board certification (as evidenced by a diploma) is like a

Good Housekeeping Seal. There are exceptions. The best neurologist I

knew was not Board certified, he couldn’t bother with the test.

Is The Neurologist A Movement Disorder Specialist?

Within the field of Neurology there are accredited (by separate Boards)

sub-specialties. Movement Disorders (which includes PD) is a

sub-specialty but is not accredited by a separate Board. Movement

Disorders includes PD (approximately 80% of the practice), the PD-like

disorders (Multiple System Atrophy, Progressive Supranuclear Palsy,

Corticobasilar Degeneration), Dystonia, Essential Tremor, Huntington

disease, Restless Legs, Tardive Dyskinesia, and Disease. To be

called a Movement Disorder specialist a neurologist must take a 1-3 year

fellowship in a Movement Disorder program after finishing his Neurology

training. Usually, the Movement Disorder specialist will display a

certificate attesting to his completion of the fellowship. If you do not

see such a certificate, ask where the specialist trained in Movement

Disorders. There are excellent neurologists who treat PD and did not

complete Movement Disorder fellowships. They, like all most Movement

Disorder specialists, belong to the Movement Disorder Society (MDS). The

MDS is an excellent organization but it is not a Good Housekeeping seal of

approval. Any neurologist, or researcher can belong if they pay an

annual fee.

Is The Movement Disorder Specialist Famous? Is He (or She) a Thought

Leader?

Does his (or her) name come up when you search for PD articles on Google,

or Medline, or the National Library of Medicine, or Scirus.com? Is he

(or she) listed in the “Best Doctors in America?” Is he (or she) on

television whenever there’s a “breaking” story on PD? Is he (or she)

J Fox’s, or Janet Reno’s, or the Pope’s doctor?

The above reveals the specialist is familiar with PD and it’s nuances.

But he or she may not be right for you. He (or she) may be too busy doing

research, writing articles, giving speeches, or traveling to see you when

you want to see him. Or, when you do get an appointment you may not see

him but one of his fellows or associates. And while he may be available

for J Fox, or Janet Reno, or the Pope, he may not be available

for you.

What Else Should I Do or Know?

Ask yourself, “Why am I seeing the doctor? What is my main problem,

complaint, concern?” Although you’re anxious, afraid, depressed, and

you may not remember everything you want to ask, try not to come with a

long list. A long list will make the doctor anxious and depressed. List

the 3 or 4 main problems, complaints, or concerns in their order of

importance to you. If you’re satisfied the doctor has answered your 3 or

4 main problems, complaints, or concerns, and there are others you want

the doctor (and not his staff) to answer, make a return appointment. .

If you’re going to see the doctor because you think you have PD, say

exactly what prompted you to come. The following are examples: “I think

I have PD because I have a tremor.” “My wife or a friend or another doctor

said he or she thought I might have PD.” “I saw Muhammad Ali, or

J Fox, or Janet Reno, or the Pope on television and I think I have what

they have.”

Bring a summary of your medical history including serious and chronic

illness, hospitalizations, surgeries, allergies, medications taken, family

and personal risks, occupational risks, lifestyle risks. If what you have

to talk about is difficult to discuss, practice how to bring it up. If

you expect bad news bring someone supportive with you.

On your first visit take a family member or friend. They will provide

you with emotional support and comfort. They’re more likely to be

objective and to hear what the specialist said rather than what you

thought he said. A word of caution: too many family members or friends

in the room, more than two, changes the nature of the visit If you have

small children get a baby sister: children may be frightened by being in a

doctor’s office, and they can cry and be disruptive.

Look for a courteous, caring, and polite staff. Look for a clean office.

Look for information on PD: books, pamphlets, and newsletters. Look for

nurse or an assistant to ask you to fill out a form regarding PD. Such a

form tells the specialist what he thinks is important. The questions

asked, the clarity with which they are asked, and the detail into which

they go into will give you an idea as to how the specialist thinks.

Waits of more than ½ hour are rarely justified. Before you visit ask if

the doctor goes to the hospital before seeing patients If he does this

may result in delays because of unforeseen emergencies If the doctor

goes to the hospital ask for an appointment on a day he does not go. If

you asked the doctor to “squeeze you in”, and he did, expect a delay. A

doctor who will see you as an emergency or as a favor will generally set a

time he can see you, or he will say, “I cannot fit you in but I can have

my associate or my colleague do so.”

----------------------------------------------------------------------

Subject: Shaking Up Your Doctor Part 2 The examination

Date: Sun, 8 Sep 2002 09:28:16 -0400

X-Message-Number: 2

The Examination

Although the diagnosis of PD may be apparent as soon as you walk-in, the

doctor should stifle the urge to make such a quick diagnosis To begin

with, the diagnosis may be incorrect, or if correct, disturbing and not

appreciated by you or your family. At the beginning of the illness, you

and your family are frightened and anxious. You have probably sensed

something is wrong but have denied or dismissed the symptoms. Now you and

your family are guilty and angry for not seeking help sooner. If then a

stranger, the doctor, rapidly point out the obvious, it succeeds only in

reinforcing your guilt and redirecting the anger toward – the doctor.

A recurrent theme of patients seeking another opinion is that the previous

doctor: “Didn’t

examine me or listen to me.” For a satisfactory doctor-patient

relationship to be established, the doctor must appear caring and

involved. He should take a careful history, conduct an examination, and

spending time with you and your family. After such a relationship has

been established, his diagnosis is more likely to be accepted and his

recommendations followed.

During the history, you may make a remark that confirms the diagnosis.

Statements such as the following are almost diagnostic of PD: “My hand

only begins to shake when I sit down” or

“My handwriting has gotten so small that the bank won’t cash my check”

It may become apparent to the doctor that you are not aware of any

difficulty either because of denial or because of your inability to sense

the difficulty. Although tremor and difficulty moving are prominent

symptoms in PD, there may also be perceptual, behavioral, and

personality changes that can interfere with your ability to recognize

your difficulties.

It may become apparent during the examination there is marital discord. A

spouse who constantly answers for you without being asked and makes

remarks such as: “He walks bent down like an ape” will not be the

sympathetic care-giver necessary for successful management. Marital

discord should be addressed. This is best done in a subsequent visit

after the doctor has a better understanding of your family dynamics.

It’s helpful if the doctor asks whether any family member or friend has

PD. If you have direct knowledge of someone who became bed-ridden

because of PD you will need reassurance that PD will not similarly affect

him.

The activities of daily living (ADL) of the Unified Parkinson Disease

Rating Scale (UPDRS) include speech, salivation, swallowing, handwriting,

cutting food and handling utensils, dressing, hygiene, turning in bed,

falling, freezing, walking, tremor, and sensory symptoms. The doctor or

his assistant’s review of your daily activities should not be reviewed

the way you review a laundry list. Careful and imaginative questioning is

always helpful.

You should be asked if there has been a change in your voice. Voice

implies difficulty with the mechanical rather than the linguistic aspects

of speech. An answer such as “yes, my voice seems to fade out at times

and people are always asking me to speak up” is almost diagnostic of PD.

You should be asked if you have recently noticed saliva escaping from the

corner of your mouth. This is a private symptom often apparent only to

you. The question usually elicits a reply such as “Yes, my pillow is wet

at night, but I didn’t mention it.” Although drooling may be a relatively

minor complaint, the symptom in the minds of many patients and families is

associated with dementia. You should be reassured that your drooling does

not mean you will “loose your mind.” Prominent swallowing difficulty

early in PD disease usually implies a PD-like disorder. Difficulty with

handwriting, cutting food, handling utensils, dressing, and hygiene to

some extent depends on whether your dominant hand is affected. If you

appear to be unaware of any difficulty with these tasks, the doctor may

ask you if your are slower in performing them. This question usually

elicits a response such as “Yes, but that isn’t anything, is it?”

It’s helpful for the doctor to obtain specimens of your handwriting and

compare them with past samples. This may show when your disease actually

began. In some people it’s reassuring to know they had PD for several

years before they were aware of their symptoms. This implies their PD is

progressing more slowly than they thought.

If your non-dominant hand is primarily affected, the questions should be

directed so as to include those activities you usually performed with that

hand. Thus if you’re right-handed with left-sided PD, you may be asked

how you buttons your shirt sleeves on your right side or how you wash your

right shoulder.

Patients rarely associate difficulty with turning in bed with a disease,

do not mention it, and are surprised when asked. Such questions provide

you with insight into the scope of your disease by making you realize that

symptoms as different as tremor, drooling, and difficulty turning in bed

are part of the same process.

The diagnosis of PD is made after taking a history (such as that

described above) and by performing an examination in the office. A

Movement Disorder specialist should be able to diagnose PD and be correct

85% of the time. Sometimes, because of unusual symptoms or because of

unusual finding on the examination the doctor may order an MRI-scan. An

MRI-scan does not diagnose PD. An MRI-scan can “rule-out” other

conditions that MAY mimic PD: hydrocephalus, small strokes, tumors.

Rarely a PET-scan (Positron Emission Tomography) using a special isotope

called fluro-dopa or a SPECT-scan (Single Photon Emission Computed

Tomography) using a special isotope may be necessary to confirm the

diagnosis. These tests are not available everywhere, require special

expertise in interpreting them, and are supplements not substitutes for an

examination by a Movement Disorder specialist.

The Stages of Parkinson Disease

In 1967, before L-dopa or levodopa, Sinemet, or the dopamine agonists, Drs

Margaret Hoehn and Melvin Yahr began rating people with PD on a 6-point

scale: 0, 1, 2, 3, 4, 5. In 1967, the Scale reflected the underlying

state of their PD. Sinemet and the agonists changed PD, symptoms

receded and became masked or hidden. Sinemet, however, doesn’t halt the

progression of PD. Thus, when you are rated, the rating reflects not

your underlying PD, but your outward appearance. To rate the underlying

PD state, Sinemet must be stopped for at least one month. For most

people this is impossible.

After 2 – 5 years many PD people fluctuate: your day consists of being

" ON " (Sinemet working) followed by being " OFF " (Sinemet not working). If

this is so you should be rated in both your " ON " and " OFF " state. The

Hoehn and Yahr Scale rates : mobility. It does not rate anxiety,

aberrant behavior, depression, dyskinesia, memory loss, difficulty

thinking, or difficulty swallowing. In many people with PD these symptoms

overshadow mobility. The Hoehn and Yahr Scale is NOT a Cancer Rating

Scale: it is not a guide to treatment and outlook. However, despite its

limits, the Scale has endured, attesting to its usefulness.

The Hoehn and Yahr Scale

You should note whether Sinemet is working, whether you are " ON " Or

whether Sinemet is NOT working, whether you are “OFF” The doctor will

select the Stage that best describes you:

0: No visible symptoms of PD.

1: Symptoms of PD confined to One-side of the body.

2: Symptoms on Both-sides of the body, NO difficulty walking.

3: Symptoms on Both-sides of the body, minimal difficulty walking.

4: Symptoms on Both-sides of the body, moderate difficulty walking.

5: Symptoms on Both-sides of the body, unable to walk.

The Hoehn and Yahr Scale, your handwriting, or symptoms such as

progressive curvature of the spine may be used to track the progression of

PD

----------------------------------------------------------------------

Subject: Shaking Up Your Doctor When You Need Treatment Pt 3

Date: Sun, 8 Sep 2002 09:34:05 -0400

X-Message-Number: 3

When You Need Treatment

Although our ideas are changing, the prevailing opinion today is that if

you have symptoms of PD and can live with the symptoms it’s best not to be

treated. However, data is accumulating about drugs that slow the rate of

progression of PD. Such drugs include the dopamine agonists Mirapex and

Requip and Co-enzyme Q-10. At present there is disagreement as to whether

the benefits in slowing the rate of progression of PD are so clear-cut

that all newly diagnosed PD patients should be started on Mirapex and

Requip or Co-enzyme Q-10 in high doses (1200 mg per day).

There’s agreement that when symptoms interfere with daily life treatment

should be started. The disagreement centers on when symptoms are severe

enough to interfere with daily life. The tremor that does not bother you

may be a major embarrassment to your friend. The common reasons people

with PD seek treatment are:

(1) Increasing tremor. Your tremor may interfere with your daily

activities or may be a major embarrassment to you socially or at work.

(2.) Slowness of movement. You may become so slow in your activities that

this imperils your work or makes it impossible for you to go without

help.

(3). Difficulty walking. Not being able to keep up with your partner. Or

an increased tendency to fall.

(4) Painful stiffness or rigidity of a major joint: the shoulder or hip.

Cramping of your arms or legs.

Dopamine Agonists as First Treatment

For people 60 years and younger who are diagnosed with PD and who need

treatment the first line drugs are the dopamine agonists, Mirapex and

Requip and Permax PD results from a loss of cells deep in the brain in a

region called the substantia nigra.

The cells in the substantia nigra are darkly pigmented and contain

dopamine. Indeed their dark pigment represents condensed molecules of

dopamine

The cells in the substantia nigra project to a region of the brain

called the striatum (so named because the region is striated or striped)

L-dopa or levodopa, a naturally occurring amino acid, similar to the amino

acid tyrosine, is changed inside the cells of the substantia nigra to

dopamine which is then transported upward through long processes of the

cells called axons

In the striatum dopamine is released and taken up by cells in the

striatum. The dopamine is released onto dopamine specialized receptors.

There are 2 kinds of receptors: the DA-1 and DA-2. The agonists stimulate

DA-2. Dopamine stimulates DA-1 and DA-2. This may make dopamine more

powerful but it also may result in dyskinesia. Drugs such as Requip,

Mirapex and Permax, like dopamine, can attach themselves to the receptors

and thus mimic the actions of dopamine. They are called dopamine mimetic

or dopamine agonists. A dopamine antagonist is a drug that blocks the

dopamine receptor (or antagonizes) it while an agonist is the opposite,

hence the name.

There is evidence that Mirapex and Requip, in addition to improving the

symptoms of PD, may slow the progression of PD. As PD progresses, the

cells in the substantia nigra drop-out and the remaining cells, like

factories, must work harder, to “pump” dopamine to the striatum. The

agonists mimic the actions of dopamine in the striatum: they do not need

the remaining dopamine cells to “pump” dopamine to the striatum. In order

for you and your doctor to make a logical decision as to whether this

information warrants a change in your treatment requires an understanding

of how the studies were done. Several questions will jump to mind.

Question 1. I was recently diagnosed with PD. I and my doctor do not

feel my symptoms are sufficiently troubling to warrant treatment. In

light of the new studies should I be placed on Mirapex or Requip even

though my symptoms are not sufficiently troubling to warrant treatment?

In the first study patients whose symptoms were sufficiently troubling to

require treatment were randomly and blindly assigned to either Mirapex or

Sinemet. The measure of PD progression used an imaging technique called

SPECT or single photon emission computed tomography. The SPECT study uses

an isotope abbreviated CIT that labels dopamine transporters. The

dopamine transporters are located on axons of dopamine cells. The axons

of these cells project to the striatum. SPECT measures the

radio-activity of the striatum by lighting up the dopamine transporters.

The fewer cells in the substantia nigra the less the distribution and

intensity of radio-activity.

In the second study patients whose symptoms were sufficiently troubling to

require treatment were randomly and blindly assigned to either Requip or

Sinemet. The measure of PD progression used an imaging technique called

PET or positron emission tomography. PET uses an isotope called

fluro-dopa. Fluro-dopa is transported up the substantia nigra axons into

the striatum. Here, fluro-dopa is taken up by the dopamine receptors on

nerve cells of the striatum. PET, like SPECT, measures the radio-activity

of the striatum. The fewer substantia nigra cells the less the

distribution and intensity of radio-activity. As, at present, there are

no direct comparisons between SPECT and PET, it cannot be said which is a

more accurate marker of the remaining substantia nigra cells. Both

studies compared the rate of progression of PD in a group of newly

diagnosed PD patients whose symptoms were sufficiently troubling to

require treatment. Although it’s reasonable to believe newly diagnosed

PD whose symptoms are NOT sufficiently troubling to warrant treatment will

also benefit, the potential benefit in slowing the disease progression

must be weighed against the side effects of Mirapex or Requip. This

issue must be discussed with your doctor.

Question 2. I have PD and my symptoms were sufficiently troubling to

start me on Sinemet. In light of the new data should I be changed to, or

should I add Mirapex or Requip to Sinemet?

In addition to the two recent studies, other studies were done comparing

Mirapex, Requip and Sinemet. In a 4 year study comparing Mirapex and

Sinemet, one separate from the SPECT study, 301 newly diagnosed PD

patients whose symptoms required treatment were randomly and blindly

assigned to treatment with either Mirapex or Sinemet. After 3 months

investigators were, if needed, allowed to add Sinemet to all patients.

After 4 years 25% of patients initially assigned to Mirapex had

dyskinesia (but only after supplemental Sinemet was added) versus 54% of

patients assigned to Sinemet. 54% of patients assigned to Mirapex had

“wearing off” versus 71% of patients assigned to Sinemet.

In a 5 year randomized trial of Requip versus Sinemet in 268 recently

diagnosed PD patients reported in the New England Journal of Medicine 2000

(volume 343, page 1484) whose symptoms required treatment and were

randomly and blindly assigned to treatment with either Requip and Sinemet.

After several months investigators were, if needed, allowed to add

Sinemet to all patients. After 5 years 20% of patients initially assigned

to Requip had dyskinesia (but only after Sinemet was added to Requip)

versus 45% of patients initially assigned to Sinemet. The improvement of

symptoms was comparable in patients initially assigned to Sinemet or

Requip. The dose of Requip was 16.5 mg per day. The dose of Sinemet was

427 mg per day.

Because of differences in the way patients were assigned to treatment in

the studies on Mirapex and Requip the results of the two studies cannot be

compared. Of the patients completing both studies and not dropping out

because of side effects or failure to comply with the terms of the study,

approximately 30% remained on Requip without Sinemet for 4 - 5 years.

Question 3 repeated. I have PD and my symptoms were sufficiently troubling

to start me

on Sinemet. In light of the new data should I be changed to, or should

I add Mirapex or Requip to Sinemet?

What will be done will be determined, in part, by your age. If you’re

60 years or less, most neurologists, before the new studies, started you

on an agonist because of the decreased likelihood of an agonist

precipitating “wearing-off”, “on-off”, or dyskinesia. With the new

studies, this trend will be accelerated.

If you’re 70 years or older, most neurologists will start you on

Sinemet. This is because

in 30% of PD patients 70 years or older, PD becomes associated with a

dementia. The dementia evolves slowly. Although the symptoms of dementia

are obvious when they appear, before they appear the underlying dementia

is “silent” and difficult to recognize. Often the first symptom of such a

“silent” dementia is the appearance of a psychosis: hallucinations,

delusions, agitation. The psychosis is often precipitated by drugs and the

agonists are more likely than Sinemet to do this. Because of this the

treatment of patients 70 years or older may not change because the desire

to slow disease progression may be less critical at age 70 years than the

fear of precipitating a psychosis, unmasking, temporarily, an underlying

dementia..

If you’re 60 - 69 years in light of the new studies, many neurologists

will start you

on Mirapex or Requip. Many will start you on Sinemet. In addition, if

you’re on Sinemet and having increased symptoms of PD, most neurologists

will now add Mirapex or Requip rather than increase Sinemet. Mirapex and

Requip will be added as much for their effect on the symptoms of PD as for

their effect on slowing disease progression. Although the possibility of

precipitating a psychosis, unmasking, temporarily, an underlying dementia

is less at age 60 - 69 than at age 70 years or older, this possibility

remains. In these patients the judgment of the neurologist as to which

drug to use will be critical.

----------------------------------------------------------------------

Subject: Shaking Up Your Doctor Part 4 When You Need Sinemet

Date: Sun, 8 Sep 2002 09:37:04 -0400

X-Message-Number: 4

When You Need L-Dopa (Levodopa, Sinemet)

Sinemet, a combination of two drugs: carbidopa plus levodopa, remains the

most potent drug for the treatment of PD. As people with PD live longer

(because treatment delays their becoming bed-bound) the side-effects of

treatment seem to over-shadow the benefits. When your doctor suggests

you start Sinemet, your first thought may be: “Isn’t Sinemet dangerous?

Isn’t it toxic?” Sinemet like any drug may be toxic in that it may have

side-effects. However, it is not toxic in the sense that it destroys or

poisons cells and makes PD worse. PD progresses, gets worse, because of

the underlying disease process, not because of L-dopa or Sinemet.

Next ask yourself whether you think Sinemet is toxic or dangerous or

whether you’re afraid to accept the fact that your PD has progressed and

you need additional treatment? It’s helpful and revealing but painful to

remind people with PD about the impact Sinemet has had on the main

symptoms of PD: tremor, rigidity, slowness of movement, and difficulty

walking. Before Sinemet more people with PD became totally bed-bound

(Stage 4 or 5 PD) in a shorter period of time than now.

Parkinson Disease Before Sinemet

In 1967, before L-dopa, before Sinemet, people diagnosed with PD lived on

average, 5 - 15 years from diagnosis to death. Death came as follows:

(1) People with PD, 5-15 years after being diagnosed became bed-bound.

Some developed difficulty swallowing and aspirated or swallowed food into

the lungs. This resulted in an aspiration pneumonia. The pneumonia

challenged the defenses in the lungs while the rigidity of PD restricted

the movement of the chest wall muscles, the muscles necessary to overcome

the pneumonia. As the pneumonia spread, it overwhelmed the body’s

defenses. Or the infection spread from the lungs to the blood and people

died of sepsis (blood poisoning).

(2) People with PD, 5-15 years after being diagnosed became bed-bound.

Unless they were turned in bed every hour, their skin broke down, they

developed pressure sores, the sores became infected, and the infection

spread. The person debilitated from PD lacked the will and the ability

to fight the infection and died.

The introduction first of L-dopa, then Sinemet changed everything.

People diagnosed with PD now live longer. Sinemet doesn’t “cure” PD, but

it postpones the day when people become bed-bound, and this in turn

postpones the complications of being bed-bound. Would any of us trade

these extra years for the side-effects of Sinemet?

As PD advances, as more cells are lost, the production and delivery of

dopamine from the cell “factories” in the nigra becomes more erratic,

less continuous, sporadic. This is related to continued loss of cell

“factories” in the nigra and to levodopa’s short duration of action.

Together they may be responsible for the “wearing-off”, “fading-out”, or

“turning-off” of an individual dose of Sinemet. To make-up for the

more erratic, less continuous delivery of dopamine from the cell

“factories” in the nigra, the receptors for dopamine on the cells in the

striatum become super-sensitive. Initially, the dose of Sinemet required

to relieve symptoms is less than that required to cause dyskinesia. As

PD progresses, as the delivery of levodopa becomes more erratic, less

continuous, as striatal cells become super-sensitive, the dose of Sinemet

required to relieve symptoms approaches that required to cause

dyskinesia.

Making Sinemet Last Longer

When Sinemet’s short duration of action was recognized and related, in

part, to “wearing-off”, “fading-out” or “turning-off” of individual doses

of Sinemet, attempts were made to prolong it’s action and make it’s

delivery to the brain less erratic, more continuous. By providing the

over-worked cell “factories” in the nigra with a more continuous delivery

of levodopa, the “factories”, although fewer in number, are able to

produce dopamine more continuously, similar to the way they produced

dopamine early in PD, during the Sinemet “honeymoon.”

Sinemet Controlled Release (Sinemet CR)

To overcome Sinemet’s short duration of action, Sinemet was embedded in a

specific matrix that delayed it’s absorption in the stomach and resulted

in a more prolonged delivery of an individual dose of Sinemet to the

brain. This form of Sinemet, Sinemet is called Sinemet controlled

release (Sinemet-CR). Sinemet-CR is available in two ratios: Sinemet-CR

50/200 which contains 50 mg of carbidopa and 200 mg of levodopa, and

Sinemet-CR 25/100 which contains 25 mg of carbidopa and 100 mg of

levodopa. Sinemet-CR had a modest effect on “wearing-off”, “fading out”,

and “turning-off” of an individual dose of Sinemet. Although the matrix

in which Sinemet was embedded delayed and prolonged the delivery of

levodopa from the stomach, the delivery remained erratic and was not

continuous. More-over, people who were on regular Sinemet complained

upon being changed to Sinemet-CR, that Sinemet-CR didn’t kick-in, and

often, when they were “off”, Sinemet-CR, unlike regular Sinemet, didn’t

turn them-on. This was related to the fact that regular Sinemet results

in a high pulse or peak of levodopa 30 - 60 minutes after taking an

individual dose. It is this high pulse or peak that results in the

feeling of Sinemet kicking-in and turning people on. The absence of a

high pulse or peak limited Sinemet-CR’s usefulness. In some people, the

benefits of Sinemet-CR could be realized, in part, by taking regular

Sinemet together with Sinemet-CR. The limitation in this approach were

that two separate tablets, regular Sinemet and Sinemet-CR, although

swallowed together were not absorbed together from the stomach, while

the high dose of levodopa that resulted from taking Sinemet and

Sinemet-CR together resulted in dyskinesia.

Selegiline or Eldepryl

Levodopa, the active part of Sinemet, is “broken-down” metabolized by

3 separate enzymes: dopa decarboxylase, COMT, and MAO-B. Carbidopa by

blocking dopa decarboxylase in the stomach and liver allows more

levodopa to leave the stomach and enter the brain. However, although

more levodopa leaves the stomach, it’s delivery to the brain remains

erratic and not continuous. Carbidopa decreased the nausea associated

with having too much dopamine produced in the stomach, carbdiopa allowed

more people to take less levodopa, but carbidopa did not result in less

“wearing off” and it did not result in less dyskinesia. MAO-B is an

enzyme present inside dopamine cells in the brain. By blocking or

inhibiting MAO-B, the dopamine formed from levodopa remains in place

longer. Eldepryl blocks or inhibits MAO-B.

Eldepryl, 5 mg twice a day, when added to Sinemet has a modest effect

on prolonging Sinemet ‘s duration of action and this in turn, has a mild

to modest effect on decreasing the “wearing off” of an individual dose of

Sinemet. In the late 1980s and early 1990s there was great interest in

Eldepryl because it was believed, incorrectly, that Eldepryl slowed the

progression of PD.

COMT is the most potent of the enzymes that break-down levodopa, and

blocking (inhibiting) COMT has the greatest effect on Sinemet:

prolonging it’s duration of action and resulting is a less erratic and

more continuous delivery of levodopa to the brain. COMT is present in

the stomach, liver, kidney, and brain. COMT also circulates in the blood.

Comtan which blocks or inhibits COMT has emerged as a safe and widely used

drug..

When Sinemet is given without Comtan most of the levodopa is changed by

stomach, liver, and circulating COMT to 3 methoxy-dopa (or 3-OMD).

3-OMD has no effect on PD, it acts as a reservoir or “sink” for levodopa.

Such a “sink” delays the action of Sinemet and results in a more

erratic and less continuous delivery of levodopa to the brain. Comtan by

inhibiting COMT outside the brain results in a more sustained level of

levodopa in the blood. Unlike Sinemet-CR, the peak effect of levodopa is

unchanged, so people who take Comtan with regular Sinemet feel themselves

“turning-on” as Sinemet “kicks-in.”

The more sustained, continuous, level of levodopa in the blood results and

in the brain results in a decrease in symptoms such as “wearing-off.”

This in turn results in the person experiencing more “on” time, more time

when his symptoms of PD are reduced or absent. For the most benefit

Comtan should be started early, when symptoms of “wearing-off” begin.

This could be when: (1) You’re thinking of switching from regular

Sinemet 3 times a day to regular Sinemet 4 times a day. (2) You’re

thinking of switching from Sinemet-CR 2 or 3 times a day to Sinemet-CR 3

or 4 times a day. (3)You wake-up in the morning and you immediately need

Sinemet (4) Your dose of Sinemet does not “kick-in.” (5) You need an

extra dose of Sinemet before you go out at night.

Comtan (200 mg) should be given with each dose of Sinemet up to 8 times

per day. Comtan can be used with regular Sinemet or Sinemet-CR. The dose

of Comtan (200 mg) does not change regardless of the number of Sinemet

tablets in each dose. Comtan when added to Sinemet when increase the side

effects of Sinemet such as dyskinesia, confusion, delusions and

hallucinations. If side-effects occur the simplest way to treat them is

to eliminate one or more of doses of Sinemet.

----------------------------------------------------------------------

Subject: leg cramps

Date: Sat, 7 Sep 2002 21:11:21 -0400

X-Message-Number: 5

question

dear dr.

are leg camps associated with pd? How can they be dealt with? My husband

has them in bed, when relaxed... He hadn't had any for many years...

thanks for your help. calif. partner...

answer

yes

please read the following

http://parkinson.org/parkpain.htm

----------------------------------------------------------------------

Subject: another question

Date: Sat, 7 Sep 2002 21:15:14 -0400

X-Message-Number: 6

questions

what is your opinion about ordering meds from canada, meds are sooo....

expensive here in US... thanks

answer

if you can get the meds you want at a cheaper price it's all to your

benefit long term remember the research that makes these drugs

available at all is done in the US prices are higher here because all

of us, in effect, subsidize Canada

abe lieberman

----------------------------------------------------------------------

Subject: Re: Neurologist vs a Parkinson or MDS specialist

Date: Sat, 7 Sep 2002 21:21:59 EDT

X-Message-Number: 7

question

I read with special interest the note from in NM who was looking for a

PD specialist. We too live in NM and I am the caregiver for my 72 yr. old

husband who has " advanced " LBD Parkinsonism. We feel we have a good

neurologist but I have often wondered if my husband could/would benefit

anything from seeing a PD specialist or going to Mayo or the parkinsons

institute in Phoenix?? Know this is a difficult question to answer - He is

currently taking 24 mg. of Requip a day, and is even having difficulty

walking w/ a walker, sleeps a lot etc.. I know things reach a point where

there really isn't much else that can be done but want to make sure we have

left " no stones unturned " that might help.

Any comments are greatly appreciated. THANKS

AEWID@...

answer

you can always benefit from another opinion by a good doctor

abe lieberman

----------------------------------------------------------------------

Subject: Re: Cabergoline

Date: Sun, 8 Sep 2002 00:17:28 -0400

X-Message-Number: 8

question

Thank you for your prompt answer Dr. Lieberman. Would you say then that =

even if cabergoline has a longer half life it does not really make a diff=

erence? Would it be the same as if taking Mirapex or Requip? Thank you.

answer

i did the original studies on cabergoline in the united states it is

a good drug

i did the original studies on mirapex and requip in the united states

they are better drugs

abe lieberman

----------------------------------------------------------------------

Subject: Re: askthedoctor digest: September 07, 2002

Date: Sun, 8 Sep 2002 08:35:48 EDT

X-Message-Number: 9

question

Dear Dr. Leiberman, I did what you told me to do and there was no website

for it. Do you happen to know a p.d. specialist in the Pgh area? I hit

http://wwwparkinson.org/docgetmap.HTM and nothing happened. Gloria

answer

check this with your provider if you have aol amoung providers you will not be

able to get the map

B. Jozefczyk, MD. MDS

2276 Sidgefield Lane

Pittsburgh, PA 15241

4126924600

Baser, MD.

4919 Ashbaugh Road

Pittsburgh, PA 15568

Hassan Hassouri, MD.

University of Pittsburgh

1 Alleghany Square

Pittsburgh, PA 15212

4123214603

Y. , MD., Zigmond, MD.

University of Pittsburgh- NPF Center of Excellence

3471 Fifth Ave

Ste 810

Pittsburgh, PA 15213

abe lieberman

----------------------------------------------------------------------

Subject: Re: askthedoctor digest: September 07, 2002

Date: Sun, 8 Sep 2002 08:17:38 EDT

X-Message-Number: 10

question

Could you please give me the name of a good pd neurologist in

Binghamton,New York area .

Thank you so much for being

here.

answer

i would go to either albany or syracuse

http://www.parkinson.org/docgetmap.htm

dr factor in albany

the university hospital in syracuse

abe lieberman

----------------------------------------------------------------------

Subject: Disappointing DBS Surgery

Date: Sun, 8 Sep 2002 08:19:37 -0400

X-Message-Number: 11

question

My 72 yr. old mother was diagnosed with PD 8 yrs. ago. Her symptoms were

not very severe, consisting almost exclusively of tremors and eventually

some joint stiffness. As the tremors were becoming more bothersome, she

decided to go through with one-sided DBS surgery in April, 2002. The

surgeon in Sweden, where she had it done, was the first to perform this

procedure over there and had since done over 200 DBS operations before my

mother.

Her surgery recovery was complicated by a staph infection that had gone

undetected. Immediately after the procedure, she was hospitalized with

urinary tract and blood infection. As a result adjustments were delayed.

Having recovered from the infections and having had several adjustments

since the surgery, things are worse than they were before all of this. The

tremors are worse than ever, she has developed depression, and is overly

sensitive to heat and water. She was trying to take a hot bath but felt so

bad that she is now opting for cool showers.

My question is if these symptoms are just a function of the adjustments

and might be eliminated through correction? Or is she just part of the

small percentage of surgeries that are not considered successful? We had

great hopes for this surgery, now we would at least like to be able to get

her back to where she was! Any suggestions and information would be

greatly appreciated. Thank you.

Ann-Mari Grisham

answer

inherent in any surgery are complications these occur at the best places

with stringent precautions they are more common in older people whether the

surgery failed in your mother because of the mulitiple infections because the

adjustments were not made or because the electrode is not in its proper place i

cannot say my recommendation is that

if she lives in the US she go to a place in the US with a large experience in

DBS such as the cleveland clinic in cleveland or the university of kansas

abe lieberman

----------------------------------------------------------------------

Subject: swelling

Date: Sun, 8 Sep 2002 13:09:25 -0700

X-Message-Number: 12

question

dear dr. leibermann=20

i was diagnosed with parkinsons in may =

this year at present i am taking 6 mg requip 2mgx 3times a day. i also =

have highbloodpressure and reflux and hegh cholestrol level and i am =

taking 20mg enalapril 10mg losec 2.5 mg bendrofluazide and 20mg of =

simvastatin each 1 per day. the parkinsons has affected me down theright =

side and recently i have been experiencing swelling in my right foot and =

hand quite severe in my right foot enough to cause quite severe =

discomfort in my foot do u think this is caused by my parkinsons or =

something else . i would be grateful forany help thanking u in advance . =

i think u do a wonderful job and god bless u to keep up the good work =

doreen

answer

the agonists mirapex requip and permax can cause such swelling

even beginning on one side more than the other

please read the following

http://www.parkinson.org/dopamine.htm

----------------------------------------------------------------------

Subject: much needed advice

Date: Sun, 8 Sep 2002 09:00:53 -0400

X-Message-Number: 13

question

My father takes sinemet 50/200 every three hours for a total of 7 doses a

day. He is also taking Requip and up to 2.5 X 3. He was hospitalized due

to sudden nighttime incontinence. The urologist started him on

Detrol(which helped with the incontinence) and although his prostate is

fine he placed him on Flowmax because my dad is up 6 to 9 times during the

night to urintate!! They also started him on Trazadone as high at 150mg,

in the hospital, with the thought that this would help him get a good

nights sleep... but he still wakes to go to the bathroom.

Many times it is just an urge to go, but his is awakened each time all the

same. My Mom has spoken with his current Neurologist(not a specialist in

Parkinson's) and she says that she feels that the DBS will help, but he

does not have an appointment with Dr. Pahwa at KU Med until Oct. 8 and has

been told that if he qualifies for the surgery it would not be until

around Jan. that it could be done.

Is there anything you can suggest? (manipualtion of current meds, new

meds, questions to ask the doctor, anything???) January is a long time off

and although, it seems like such a minor thing to most, Dad is now to

unsteady during the night to go to the bathroom alone, so Mom is having to

go with him. These frequent trips are REALLY taking a toll on her. They

are both in their 70's and they are not getting much sleep at all. If

something happens to her I do not know what we will do. I help as much as

I can, but have two little ones so taking the " night shift " is a problem.

Thank you so very much!!!

answer

the dbs may improve his mobility it will not help with the bladder problem

the control of the bladder will not be affected by the dbs

be certain you have clarified this with the doctors

without seeing and examining your father i cannot answer specifically

the simplest thing is to get a bed side commode

and have someone other than your mother stay with your father on some nights to

give your mother a rest these are the most helpful things

you can do more helpful than trying to manipulate drugs which have

already been artfully manipulated

abe lieberman

----------------------------------------------------------------------

Subject: donations

Date: Sun, 08 Sep 2002 09:13:29 -0400

X-Message-Number: 14

question

We presently donate to a charitable organization that automatically

deducts $25 per month directly from our checking account. Now that 2 of

the large PD organizations are merging, we want to be even more

supportive financially of them, and wonder if there is a way to have

that type of deduction taken automatically. I would imagine that many

people would donate if that arrangement were available. We can't afford

more than that, but if every PD family donated $25 per month, surely

that would be a great help. What do you think?

answer

if 10% of the 25,000 people who each day use ASK THE DOCTOR or ASK THE

SURGEON or ASK THE DIETITIAN gave us $25 a month we would have

62,500 a month our website gets less than a tenth of that

if we had this for one year we would have 750,000 per year and we

could almost double our peer reviewed research grants for innovative

research

would that this happened

we would come up with a plan to make it easier for you to donate

monthly to THE PARKINSON FOUNDATION

abe lieberman

----------------------------------------------------------------------

Subject: generic sinemet

Date: Sun, 8 Sep 2002 18:32:08 -0400

X-Message-Number: 15

Dear Dr. Lieberman:

My wife (PWP) was recently hospitalized under care of an internist. When

the nurse brought the Sinemet CR 50/200 the first time, I noticed it was

slightly different. The nurse said it was generic (from the hospital

pharmacy). I stated firmly that our patient’s neurologist had instructed

us not to use generic Sinemet. We used our own Sinemet from that point

on.

The tablet in question is a unit dose in blister package, marked:

“PKG. BY UDL, ROCKFORD, IL. " The tablet is a gray color. It may be all

right for some patients, but not for my wife. Checking other websites,

UDL has had three recalls of other med products in the past twenty months.

We Caregivers have to stay alert.

----------------------------------------------------------------------

Subject: Parkinson's Walk

Date: Sun, 8 Sep 2002 10:14:04 EDT

X-Message-Number: 16

Hi Dr. Lieberman,

Is there a place where I can post this?

Hello Readers,

I've been writing to Dr. Lieberman for a couple of months, ever since my

mother was diagnosed with Parkinson's. We all know how devastating this

disease is.

I will be walking in Long Island, NY in a Parkinson's fundraiser on Saturday,

Sept 28 of this year. My fundraising is in honor of my mother, and for all

the afflicted, incredible loved ones for their strength and perserverance and

heart in dealing with Parkinson's . The money will be going toward

Parkinson's research. Anybody who would like to make a pledge to the cause

can write a check out to:

American Parkinson Disease Association, Inc. (please use my name on the memo

of your check so I can have it tallied in my pledge account) and send it

directly to the foundation at :

ADPA Information and Referral Center

C/o NYCOM/NYIT

PO Box 8000

Old Westbury, NY 11568.

Any contribution would be GREATLY appreciated. Anybody who is interested in

mailing it directly to me, or has any questions, please email me at

Jsavitzky@....

Thanks,

Jill Savitzky

----------------------------------------------------------------------

Subject: toes

Date: Sun, 8 Sep 2002 10:40:27 EDT

X-Message-Number: 17

question

i am a patient with newly diagonosed p.d.

sometime my toes go under and have a hard time trying to straightenening

them ,is this normal with pd.

thank you

sandie

answer

yes

this is usually a symptom of under medication

abe lieberman

----------------------------------------------------------------------

Subject: Re: Ask the Doctor Sept 8, 2002

Date: Sun, 8 Sep 2002 09:45:44 -0500

X-Message-Number: 18

Breeden M.D. of Farmington,NM is the first and finest neurologist

I've seen in my twenty years with parkinsons.

----------------------------------------------------------------------

Subject: Re: askthedoctor digest: September 04, 2002

Date: Sun, 8 Sep 2002 12:33:22 EDT

X-Message-Number: 19

question

Dear DR Lieberman,

Would you please give me the name of a good neurologist in the Muskegon or

Grand Rapids, Michigan area.

Thank you, Lorraine

answer

please click onto the following

http://www.parkinson.org/docgetmap.htm

----------------------------------------------------------------------

Subject: Post-traumatic stress syndrome

Date: Sun, 8 Sep 2002 13:38:25 -0400

X-Message-Number: 20

question

Is there a causal link between pst-traumatic stress syndrome and

Parkinson's Disease?

answer

to my knowledge there is not

abe lieberman

----------------------------------------------------------------------

Subject: Shingles and PD?

Date: Sun, 8 Sep 2002 11:10:59 -0700

X-Message-Number: 21

question

Had shingles about 5 years ago, dx with PD 3 years ago. Felt since

having the shingles, the PD symptoms started. Has there been any

research into the virus of shingles causing PD? Read your Digest every

day and thank you for being there for all of us.

answer

as we do not know the cause of pd a viral infection remains an option however

at present there is no evidence that infection with shingles or chicken pox

(it's the same virus) is a cause of pd

abe lieberman

mswer

----------------------------------------------------------------------

Subject: Re: askthedoctor digest: September 07, 2002

Date: Sun, 8 Sep 2002 15:45:27 -0400

X-Message-Number: 22

question

We also live in the Binghamton area, and are considering Syracuse, Albany

and Rochester. We have been leaning toward Rochester because there is a

PD Center of Excellence there. In your Opinion, would that be beneficial?

answer

the center in rochester is one of the best in the world

abe lieberman

----------------------------------------------------------------------

Subject: Re: Shaking Up your Doctor: Getting More From Your Visit

Date: Sun, 8 Sep 2002 16:27:12 EDT

X-Message-Number: 23

From a reader

What wonderful, comprehensive and sensitive lessons for both patient and

doctor of any disease. It should be required reading for all.

One thing that I found helpful when visiting the doctor with my husband, was

to bring a written report as well as questions. I did this by keeping a diary

on the computer of his symptoms and behaviors and then compressing this into

a short typed report. I gave the doctor a copy as he began the visit which he

read, usually without comment. As he conducted the examination he often

referred to my notes or asked questions that were obviously triggered by what

I had written. The doctor's questions were directed to my husband which

forced him to be more involved with his treatment. It allowed the doctor to

cover all of my points of concern at his speed and sequence. It also made

sure that I did not forget important details. I followed along and noted on

my copy the doctor's comments and suggestions since these are easily

forgotten afterward. Keeping this history in a binder made it easy to give a

concise and accurate report of the progression, treatment and drug reactions

to the various specialists we saw.

So grateful for this forum and wish it had been available when I so

desperately needed it.

answer

thank you for your kind comments it took a great effort to write it

and comments such as yours make me realize it was worth the time and effort

abe lieberman

----------------------------------------------------------------------

Subject: Spheramine

Date: Sun, 8 Sep 2002 17:31:24 EDT

X-Message-Number: 24

question

Dr Lieberman:

Yesterday's dietician digest mentioned a product

being tested in the UK called Spheramine. Do you know much

about this product.

answer

please click on below

http://www.titanpharm.com/press/Spheramine-PhaseII.html

----------------------------------------------------------------------

Subject: comtan & Requip

Date: Sun, 8 Sep 2002 16:36:45 -0400

X-Message-Number: 25

question

Dr. Leiberman,

Is the amount of Comtan ever increased? And if so, what would be a reason

for increasing the amount? Are there any negative consequences to

increasing the dosage?

answer

if the initial dose 200 mg with each dose of sinemet does not help with

wearing off i personally increase the dose to 400 mg it sometimes helps

this however must be discussed with your doctor

Also, when increasing Requip... how often do you increase the amount and

how do you know when you have reached the required amount for your body?

Do you just look for dyskinesia or are there other symptoms to indicate

that you should not increase any further?

answer

there is no set rule it depends on you and your doctor

abe lieberman

----------------------------------------------------------------------

Subject: Re: askthedoctor digest: September 07, 2002

Date: Sun, 8 Sep 2002 17:51:10 EDT

X-Message-Number: 26

This is for Jim who wrote asking about a parkinson's specialist in New

Mexico. I have had PD for almost 12 years and have been delighted with the

treatment I have received from Dr. Doulgas Barrett, Southwest Medical

Associates in Albuquerque, . Dr. Barrettt is a board-certified

neurologist. Good luck, Harry

---

END OF DIGEST

****************************************************

You are currently subscribed to askthedoctor as: fvjames@...

To unsubscribe send a blank email to leave-askthedoctor-38867W@...

Shaking Up Parkinson Disease - The book By Dr. Abraham Lieberman " ..shows how

patients at all stages of the disease can maintain their quality of life. " The

Book also supplies info on PD: how it's recognized, what causes it, who gets it,

when and how to get help, and much more. All Royalties are donated to the

National Parkinson Foundation. Get your copy today, by ordering online at

http://www.parkinson.org/bookfaq.htm

***************END OF DIGEST*************************

Link to comment
Share on other sites

Join the conversation

You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

Loading...
×
 Share
Go to topic listing
×
×
  • Create New...