New Diagnosis

[Guest guest]

Dear Folks:

Three years ago, I began feeling like I was slowing down. I had difficulty in walking fast, in buttoning clothes, and in tying my shoes. Occasionally, I had slurred speech, hunted for words, and spoke words that did not express my thoughts well. My reasoning ability remained as sharp as ever. In addition, I occasionally realized that I had not taken a breath in a while, and I would gasp for air. Two years ago, I was diagnosed by a neurologist as having early stages of bradykinetic Parkinson's disease, and I began taking medications for that condition. Early this year, after discontinuing Requip because it caused me to retain water (I gained 18 pounds in 3 months), I began having a terrible burning sensation in my legs when they were exposed to cold. Changing medication has helped with that problem, but I developed new problems: a feeling of being hot all the time and sweating profusely and shortness of breath with only moderate exertion. I thought I needed a new viewpoint of my problems, so last week I went to the Cleveland Clinic for a second opinion; the new diagnosis is that I have shy drager syndrome.

I have been looking up information on this condition, finding the Vanderbilt University web site and then this chat room. I was shocked to see how grim the end process is. Having recovered from the initial shock, I'm faced with having to make plans for this end process. My gut feeling, based upon the slowness of the deterioration so far, is that I'll be one of those who survive for 20 years, but, of course, that is by no means certain. My problem is that I will have no potential caregiver. I am a 64-year old bachelor with no siblings. My father died last year at the age of 93, and while my mother is still living and active, I do not expect she will be around when I need care. I have taken out a long-term care policy, however. I need to decide when I should sell my condo and move into a facility which offers the care I'll need when the time comes. Does anyone have any suggestions that would help me to decide when to make the move?

Byron

[Guest guest]

Greetings Byron!

Sorry you have to be here, but hopefully you will find the support you

need here.

Yes, a long-term care policy is vital for someone with MSA (the new name

for Shy-Drager). When my work offered it, shortly after symptoms

surfaced, I decided to purchase it.

When to look into different housing? I would recommend now. Find out

what facilities are available now. Find out how long the waiting lists

are. Determine which set of facilities appear to have the best ongoing

care. Likewise be certain to make out wills and the like.

Then continue to enjoy your life. Don't focus on the MSA. Why do I say

this? Well, you yourself mention the symptoms are progressing slowly.

Also you mention:

I had difficulty in walking fast, in buttoning

clothes, and in tying my shoes. Occasionally,

I had slurred speech, hunted for words, and spoke

words that did not express my thoughts well. My

reasoning ability remained as sharp as ever. In

addition, I occasionally realized that I had not

taken a breath in a while, and I would gasp for air.

It appears you have MSA-C, that is symptoms that start as Sporadic OPCA.

Or MSA-C (since it progressed into autonomic problems). You may want to

view the following pages:

http://emedicine.com/neuro/topic671.htm Multiple Systems Atrophy

http://emedicine.com/neuro/topic282.htm OPCA (MSA-C)

http://emedicine.com/neuro/topic354.htm SND (MSA-P)

Sporadic OPCA is the second item. But you will note that based on your

symptoms, it appears to have shifted quite clearly into MSA. Since it

started with problems with the cerebellum, it is considered to be MSA-C.

IF you actively control symptoms, then you stand a good chance of a

longer life expectancy.

One word of warning. With MSA-C, you need to be very careful about

sleep and swallowing problems. The first leads to very poor sleep,

extreme fatigue, high blood pressure, and in extreme cases, death during

sleep. The second often leads to aspiration pneumonia, which is the

leading cause of death for someone with MSA-C.

To test problems with sleep, you might want to visit the following page:

http://www.sleepnet.com/sleeptest.html

If you find yourself swallowing food incorrectly, please go have a

swallowing test done. There are specific therapies to help improve

swallowing problems. In extreme cases a feeding tube can be inserted

directly into the stomach. This greatly reduces the chance of

aspiration pneumonia. But that is most likely a LONG way done the line.

And you will get an idea that it is time, when you find you are less and

less able to move around your own home. Be certain to discuss this with

your doctor / neurologist. They should be able to have you work with a

physical therapist to determine when it is time to move.

Anyway, just some thoughts...

Regards,

=jbf=

B. Fisher

[Guest guest]

Dear Byron,

Welcom to our group but sorry you have need to find us. My husband

Jerry has MSA/OPCA and was diagnosed several years ago. We found

this gourp a couple months ago and are so appreciative of the love

and support we have received. I am sure there will be many people

willing to share as much knowledge as possible with you. Since

Jerry's symptoms (and everyone elses, for that matter) seem so unique

unto themselves it is hard to tell you what or when. Jerry noticed

symptoms in 1997, was diagnosed OPCA in 1998, MSA in early 1999 and

has been in a wheelchair and completed dependent on my care since

October of 2000. Again, I remind you that there are others who haved

cared for themselves much longer than my husband and it sounds like

your dianosis is different than his as you are looking at Shy Drager

rather than OPCA as the main component of this disease. God Bless

you and again, welcome.

Jan (from Blazing Arizona)

> Dear Folks:

>

> Three years ago, I began feeling like I was slowing down. I

had difficulty in walking fast, in buttoning clothes, and in tying my

shoes. Occasionally, I had slurred speech, hunted for words, and

spoke words that did not express my thoughts well. My reasoning

ability remained as sharp as ever. In addition, I occasionally

realized that I had not taken a breath in a while, and I would gasp

for air. Two years ago, I was diagnosed by a neurologist as having

early stages of bradykinetic Parkinson's disease, and I began taking

medications for that condition. Early this year, after discontinuing

Requip because it caused me to retain water (I gained 18 pounds in 3

months), I began having a terrible burning sensation in my legs when

they were exposed to cold. Changing medication has helped with that

problem, but I developed new problems: a feeling of being hot all the

time and sweating profusely and shortness of breath with only

moderate exertion. I thought I needed a new viewpoint of my

problems, so last week I went to the Cleveland Clinic for a second

opinion; the new diagnosis is that I have shy drager syndrome.

>

> I have been looking up information on this condition, finding

the Vanderbilt University web site and then this chat room. I was

shocked to see how grim the end process is. Having recovered from

the initial shock, I'm faced with having to make plans for this end

process. My gut feeling, based upon the slowness of the

deterioration so far, is that I'll be one of those who survive for 20

years, but, of course, that is by no means certain. My problem is

that I will have no potential caregiver. I am a 64-year old bachelor

with no siblings. My father died last year at the age of 93, and

while my mother is still living and active, I do not expect she will

be around when I need care. I have taken out a long-term care

policy, however. I need to decide when I should sell my condo and

move into a facility which offers the care I'll need when the time

comes. Does anyone have any suggestions that would help me to decide

when to make the move?

>

> Byron

[Guest guest]

Hello Byron: Fisher's reply to you letter was sincere, sound, and honest advise. My husband has ShyDrager. We live in a retirement complex but live independently in a cottage on the premises. We have access to an infirmary with skilled nursing care, but in the meantime are well taken care of on a day to day basis. Now is the time to make a decision. Best of luck. Winifred

New Diagnosis

Dear Folks:

Three years ago, I began feeling like I was slowing down. I had difficulty in walking fast, in buttoning clothes, and in tying my shoes. Occasionally, I had slurred speech, hunted for words, and spoke words that did not express my thoughts well. My reasoning ability remained as sharp as ever. In addition, I occasionally realized that I had not taken a breath in a while, and I would gasp for air. Two years ago, I was diagnosed by a neurologist as having early stages of bradykinetic Parkinson's disease, and I began taking medications for that condition. Early this year, after discontinuing Requip because it caused me to retain water (I gained 18 pounds in 3 months), I began having a terrible burning sensation in my legs when they were exposed to cold. Changing medication has helped with that problem, but I developed new problems: a feeling of being hot all the time and sweating profusely and shortness of breath with only moderate exertion. I thought I needed a new viewpoint of my problems, so last week I went to the Cleveland Clinic for a second opinion; the new diagnosis is that I have shy drager syndrome.

I have been looking up information on this condition, finding the Vanderbilt University web site and then this chat room. I was shocked to see how grim the end process is. Having recovered from the initial shock, I'm faced with having to make plans for this end process. My gut feeling, based upon the slowness of the deterioration so far, is that I'll be one of those who survive for 20 years, but, of course, that is by no means certain. My problem is that I will have no potential caregiver. I am a 64-year old bachelor with no siblings. My father died last year at the age of 93, and while my mother is still living and active, I do not expect she will be around when I need care. I have taken out a long-term care policy, however. I need to decide when I should sell my condo and move into a facility which offers the care I'll need when the time comes. Does anyone have any suggestions that would help me to decide when to make the move?

ByronIf you do not wish to belong to shydrager, you may unsubscribe by sending a blank email to shydrager-unsubscribe

[Guest guest]

Thanks for the information and advice. I'll look at the resources you have

given.

Yes, I want to get on with my life, as soon as possible. I have been

semi-retired from teaching since June of 2001. I plan to teach just one

course per quarter as long as my health permits. Also, I am chairman and

CEO of a non-profit foundation; I have to drive 500 miles to attend meetings

of the Board of Directors. I have written 67% of each of two books, and I

have an outline in my mind for a third. I have long planned for these as my

retirement activities, and I will do my utmost to keep this newly-discovered

condition from interfering with them.

I note in the June 22 TV interview, there is cognitive impairment associated

with this condition. I wonder if continuing to learn something new, so that

new neural pathways are activated, will help to forestall this. For

example, I was forced to learn a lot about two areas of the law when my

foundation was involved in a lawsuit and I was actively involved in the

process (law is not my chosen field), even presenting part of the oral

argument before an appeals court last year. We'll see.

Thanks again for your help.

Byron

RE: New Diagnosis

> Greetings Byron!

>

> Sorry you have to be here, but hopefully you will find the support you

> need here.

>

> Yes, a long-term care policy is vital for someone with MSA (the new name

> for Shy-Drager). When my work offered it, shortly after symptoms

> surfaced, I decided to purchase it.

>

> When to look into different housing? I would recommend now. Find out

> what facilities are available now. Find out how long the waiting lists

> are. Determine which set of facilities appear to have the best ongoing

> care. Likewise be certain to make out wills and the like.

>

> Then continue to enjoy your life. Don't focus on the MSA. Why do I say

> this? Well, you yourself mention the symptoms are progressing slowly.

> Also you mention:

>

> I had difficulty in walking fast, in buttoning

> clothes, and in tying my shoes. Occasionally,

> I had slurred speech, hunted for words, and spoke

> words that did not express my thoughts well. My

> reasoning ability remained as sharp as ever. In

> addition, I occasionally realized that I had not

> taken a breath in a while, and I would gasp for air.

>

> It appears you have MSA-C, that is symptoms that start as Sporadic OPCA.

> Or MSA-C (since it progressed into autonomic problems). You may want to

> view the following pages:

>

> http://emedicine.com/neuro/topic671.htm Multiple Systems Atrophy

> http://emedicine.com/neuro/topic282.htm OPCA (MSA-C)

> http://emedicine.com/neuro/topic354.htm SND (MSA-P)

>

> Sporadic OPCA is the second item. But you will note that based on your

> symptoms, it appears to have shifted quite clearly into MSA. Since it

> started with problems with the cerebellum, it is considered to be MSA-C.

> IF you actively control symptoms, then you stand a good chance of a

> longer life expectancy.

>

> One word of warning. With MSA-C, you need to be very careful about

> sleep and swallowing problems. The first leads to very poor sleep,

> extreme fatigue, high blood pressure, and in extreme cases, death during

> sleep. The second often leads to aspiration pneumonia, which is the

> leading cause of death for someone with MSA-C.

>

> To test problems with sleep, you might want to visit the following page:

>

> http://www.sleepnet.com/sleeptest.html

>

> If you find yourself swallowing food incorrectly, please go have a

> swallowing test done. There are specific therapies to help improve

> swallowing problems. In extreme cases a feeding tube can be inserted

> directly into the stomach. This greatly reduces the chance of

> aspiration pneumonia. But that is most likely a LONG way done the line.

>

> And you will get an idea that it is time, when you find you are less and

> less able to move around your own home. Be certain to discuss this with

> your doctor / neurologist. They should be able to have you work with a

> physical therapist to determine when it is time to move.

>

> Anyway, just some thoughts...

>

>

> Regards,

> =jbf=

>

> B. Fisher

>

>

> If you do not wish to belong to shydrager, you may

> unsubscribe by sending a blank email to

>

> shydrager-unsubscribe

>

>

>

>

>

[Guest guest]

Dear Jan:

Thanks for your wishes. You and your husband have my best wishes, as well.

Byron

Re: New Diagnosis

> Dear Byron,

> Welcom to our group but sorry you have need to find us. My husband

> Jerry has MSA/OPCA and was diagnosed several years ago. We found

> this gourp a couple months ago and are so appreciative of the love

> and support we have received. I am sure there will be many people

> willing to share as much knowledge as possible with you. Since

> Jerry's symptoms (and everyone elses, for that matter) seem so unique

> unto themselves it is hard to tell you what or when. Jerry noticed

> symptoms in 1997, was diagnosed OPCA in 1998, MSA in early 1999 and

> has been in a wheelchair and completed dependent on my care since

> October of 2000. Again, I remind you that there are others who haved

> cared for themselves much longer than my husband and it sounds like

> your dianosis is different than his as you are looking at Shy Drager

> rather than OPCA as the main component of this disease. God Bless

> you and again, welcome.

> Jan (from Blazing Arizona)

>

>

> > Dear Folks:

> >

> > Three years ago, I began feeling like I was slowing down. I

> had difficulty in walking fast, in buttoning clothes, and in tying my

> shoes. Occasionally, I had slurred speech, hunted for words, and

> spoke words that did not express my thoughts well. My reasoning

> ability remained as sharp as ever. In addition, I occasionally

> realized that I had not taken a breath in a while, and I would gasp

> for air. Two years ago, I was diagnosed by a neurologist as having

> early stages of bradykinetic Parkinson's disease, and I began taking

> medications for that condition. Early this year, after discontinuing

> Requip because it caused me to retain water (I gained 18 pounds in 3

> months), I began having a terrible burning sensation in my legs when

> they were exposed to cold. Changing medication has helped with that

> problem, but I developed new problems: a feeling of being hot all the

> time and sweating profusely and shortness of breath with only

> moderate exertion. I thought I needed a new viewpoint of my

> problems, so last week I went to the Cleveland Clinic for a second

> opinion; the new diagnosis is that I have shy drager syndrome.

> >

> > I have been looking up information on this condition, finding

> the Vanderbilt University web site and then this chat room. I was

> shocked to see how grim the end process is. Having recovered from

> the initial shock, I'm faced with having to make plans for this end

> process. My gut feeling, based upon the slowness of the

> deterioration so far, is that I'll be one of those who survive for 20

> years, but, of course, that is by no means certain. My problem is

> that I will have no potential caregiver. I am a 64-year old bachelor

> with no siblings. My father died last year at the age of 93, and

> while my mother is still living and active, I do not expect she will

> be around when I need care. I have taken out a long-term care

> policy, however. I need to decide when I should sell my condo and

> move into a facility which offers the care I'll need when the time

> comes. Does anyone have any suggestions that would help me to decide

> when to make the move?

> >

> > Byron

>

>

> If you do not wish to belong to shydrager, you may

> unsubscribe by sending a blank email to

>

> shydrager-unsubscribe

>

>

>

>

>

[Guest guest]

Dear Winifred:

Thanks for your advice and good wishes. Best wishes to you and Bill.

Byron

New Diagnosis

Dear Folks:

Three years ago, I began feeling like I was slowing down. I had difficulty in walking fast, in buttoning clothes, and in tying my shoes. Occasionally, I had slurred speech, hunted for words, and spoke words that did not express my thoughts well. My reasoning ability remained as sharp as ever. In addition, I occasionally realized that I had not taken a breath in a while, and I would gasp for air. Two years ago, I was diagnosed by a neurologist as having early stages of bradykinetic Parkinson's disease, and I began taking medications for that condition. Early this year, after discontinuing Requip because it caused me to retain water (I gained 18 pounds in 3 months), I began having a terrible burning sensation in my legs when they were exposed to cold. Changing medication has helped with that problem, but I developed new problems: a feeling of being hot all the time and sweating profusely and shortness of breath with only moderate exertion. I thought I needed a new viewpoint of my problems, so last week I went to the Cleveland Clinic for a second opinion; the new diagnosis is that I have shy drager syndrome.

I have been looking up information on this condition, finding the Vanderbilt University web site and then this chat room. I was shocked to see how grim the end process is. Having recovered from the initial shock, I'm faced with having to make plans for this end process. My gut feeling, based upon the slowness of the deterioration so far, is that I'll be one of those who survive for 20 years, but, of course, that is by no means certain. My problem is that I will have no potential caregiver. I am a 64-year old bachelor with no siblings. My father died last year at the age of 93, and while my mother is still living and active, I do not expect she will be around when I need care. I have taken out a long-term care policy, however. I need to decide when I should sell my condo and move into a facility which offers the care I'll need when the time comes. Does anyone have any suggestions that would help me to decide when to make the move?

ByronIf you do not wish to belong to shydrager, you may unsubscribe by sending a blank email to shydrager-unsubscribe

[Guest guest]

Hi Byron,

What do you teach? Are you working on the great American Novel or

non-fiction? I think it is great that you continue your work as long

as possible. Using our brains can never hurt.

Jan

> Thanks for the information and advice. I'll look at the resources

you have

> given.

>

> Yes, I want to get on with my life, as soon as possible. I have

been

> semi-retired from teaching since June of 2001. I plan to teach

just one

> course per quarter as long as my health permits. Also, I am

chairman and

> CEO of a non-profit foundation; I have to drive 500 miles to attend

meetings

> of the Board of Directors. I have written 67% of each of two

books, and I

> have an outline in my mind for a third. I have long planned for

these as my

> retirement activities, and I will do my utmost to keep this newly-

discovered

> condition from interfering with them.

>

> I note in the June 22 TV interview, there is cognitive impairment

associated

> with this condition. I wonder if continuing to learn something

new, so that

> new neural pathways are activated, will help to forestall this. For

> example, I was forced to learn a lot about two areas of the law

when my

> foundation was involved in a lawsuit and I was actively involved in

the

> process (law is not my chosen field), even presenting part of the

oral

> argument before an appeals court last year. We'll see.

>

> Thanks again for your help.

>

> Byron

>

> RE: New Diagnosis

>

>

> > Greetings Byron!

> >

> > Sorry you have to be here, but hopefully you will find the

support you

> > need here.

> >

> > Yes, a long-term care policy is vital for someone with MSA (the

new name

> > for Shy-Drager). When my work offered it, shortly after symptoms

> > surfaced, I decided to purchase it.

> >

> > When to look into different housing? I would recommend now.

Find out

> > what facilities are available now. Find out how long the waiting

lists

> > are. Determine which set of facilities appear to have the best

ongoing

> > care. Likewise be certain to make out wills and the like.

> >

> > Then continue to enjoy your life. Don't focus on the MSA. Why

do I say

> > this? Well, you yourself mention the symptoms are progressing

slowly.

> > Also you mention:

> >

> > I had difficulty in walking fast, in buttoning

> > clothes, and in tying my shoes. Occasionally,

> > I had slurred speech, hunted for words, and spoke

> > words that did not express my thoughts well. My

> > reasoning ability remained as sharp as ever. In

> > addition, I occasionally realized that I had not

> > taken a breath in a while, and I would gasp for air.

> >

> > It appears you have MSA-C, that is symptoms that start as

Sporadic OPCA.

> > Or MSA-C (since it progressed into autonomic problems). You may

want to

> > view the following pages:

> >

> > http://emedicine.com/neuro/topic671.htm Multiple Systems

Atrophy

> > http://emedicine.com/neuro/topic282.htm OPCA (MSA-C)

> > http://emedicine.com/neuro/topic354.htm SND (MSA-P)

> >

> > Sporadic OPCA is the second item. But you will note that based

on your

> > symptoms, it appears to have shifted quite clearly into MSA.

Since it

> > started with problems with the cerebellum, it is considered to be

MSA-C.

> > IF you actively control symptoms, then you stand a good chance of

a

> > longer life expectancy.

> >

> > One word of warning. With MSA-C, you need to be very careful

about

> > sleep and swallowing problems. The first leads to very poor

sleep,

> > extreme fatigue, high blood pressure, and in extreme cases, death

during

> > sleep. The second often leads to aspiration pneumonia, which is

the

> > leading cause of death for someone with MSA-C.

> >

> > To test problems with sleep, you might want to visit the

following page:

> >

> > http://www.sleepnet.com/sleeptest.html

> >

> > If you find yourself swallowing food incorrectly, please go have a

> > swallowing test done. There are specific therapies to help

improve

> > swallowing problems. In extreme cases a feeding tube can be

inserted

> > directly into the stomach. This greatly reduces the chance of

> > aspiration pneumonia. But that is most likely a LONG way done

the line.

> >

> > And you will get an idea that it is time, when you find you are

less and

> > less able to move around your own home. Be certain to discuss

this with

> > your doctor / neurologist. They should be able to have you work

with a

> > physical therapist to determine when it is time to move.

> >

> > Anyway, just some thoughts...

> >

> >

> > Regards,

> > =jbf=

> >

> > B. Fisher

> >

> >

> > If you do not wish to belong to shydrager, you may

> > unsubscribe by sending a blank email to

> >

> > shydrager-unsubscribe@y...

> >

> >

> >

> >

> >

[Guest guest]

Bryon,

Welcome to the list, sorry you had to find us. On your specific

question of "How long", there is no easy answer. made an excellent

suggestion of at least look now and see what your options are for the future.

Since you seem to have had it for 2-3 years, AND assuming the diagnoses

is correct, I would guess you need to plan on needing a wheelchair in 1-3

years. If it is truly MSA, you will need at least some help at that

time also and full time help with getting around, baths, etc. within two

years after that. It IS still possible that you have a lesser brain

disorder.

What are you taking for the pain you mention? The statement "but

I developed new problems: a feeling of being hot all the time and sweating

profusely and shortness of breath with only moderate exertion."

could point to some side

effects of painkillers.

With exercise, you may be able to

keep some computer use for a number of years yet, my wife used a computer

almost 11 years after her original dx of PD and six after the dx of MSA.

Typing will become increasingly difficult over the years.

The cognitive skills are not affected

(usually) as much as information sorting and usage are affected.

Short term memory loss CAN be caused by an infection. Info processing

becomes a major problem and therefore driving a car becomes impossible

(probably the first thing you will lose).

Hope this helps, Bill Werre

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

Byron Hall wrote:

Dear

Folks:

Three years ago, I began feeling like I was slowing down. I had difficulty

in walking fast, in buttoning clothes, and in tying my shoes. Occasionally,

I had slurred speech, hunted for words, and spoke words that did not express

my thoughts well. My reasoning ability remained as sharp as ever.

In addition, I occasionally realized that I had not taken a breath in a

while, and I would gasp for air. Two years ago, I was diagnosed by

a neurologist as having early stages of bradykinetic Parkinson's disease,

and I began taking medications for that condition. Early this year,

after discontinuing Requip because it caused me to retain water (I gained

18 pounds in 3 months), I began having a terrible burning sensation in

my legs when they were exposed to cold. Changing medication has helped

with that problem, but I developed new problems: a feeling of being hot

all the time and sweating profusely and shortness of breath with only moderate

exertion. I thought I needed a new viewpoint of my problems, so last

week I went to the Cleveland Clinic for a second opinion; the new diagnosis

is that I have shy drager syndrome.

I have been looking up information on this condition, finding the Vanderbilt

University web site and then this chat room. I was shocked to see

how grim the end process is. Having recovered from the initial shock,

I'm faced with having to make plans for this end process. My gut

feeling, based upon the slowness of the deterioration so far, is that I'll

be one of those who survive for 20 years, but, of course, that is by no

means certain. My problem is that I will have no potential caregiver.

I am a 64-year old bachelor with no siblings. My father died last

year at the age of 93, and while my mother is still living and active,

I do not expect she will be around when I need care. I have taken

out a long-term care policy, however. I need to decide when I should sell

my condo and move into a facility which offers the care I'll need when

the time comes. Does anyone have any suggestions that would help

me to decide when to make the move? Byron

If you do not wish to belong to shydrager, you may

unsubscribe by sending a blank email to

shydrager-unsubscribe

[Guest guest]

Dear Jan:

I teach physics and have done so for 34 years. My interests are quite

broad, however.

From the early 1970's, I have been working on a book in which I develop

an ethical theory and framework, along with important applications. My

writing of this book has been interrupted since March of 1997 when I learned

of the death of a long-time friend with whom I had been working to preserve

her farm for the public as open space with some historical significance.

She died less than 48 hours before signing the legal documents. I was named

as a trustee to the trust she would have established. Previously, I had

promised her to do everything I could to help her preserve the farm, and I

felt bound by that promise even after her death, resulting in a monumental

effort -- including a lawsuit --that still is not finished. My second book

is about this effort; I shall donate royalties to the non-profit foundation

we established originally to manage the farm.

Since my late friend was such an interesting and unusual person, the

inspiration came to me to write my third book on other interesting people I

have known. I have used stories about many of these people in my teaching,

so the outline of the book is in my mind.

Thanks for your interest.

Byron

RE: New Diagnosis

> >

> >

> > > Greetings Byron!

> > >

> > > Sorry you have to be here, but hopefully you will find the

> support you

> > > need here.

> > >

> > > Yes, a long-term care policy is vital for someone with MSA (the

> new name

> > > for Shy-Drager). When my work offered it, shortly after symptoms

> > > surfaced, I decided to purchase it.

> > >

> > > When to look into different housing? I would recommend now.

> Find out

> > > what facilities are available now. Find out how long the waiting

> lists

> > > are. Determine which set of facilities appear to have the best

> ongoing

> > > care. Likewise be certain to make out wills and the like.

> > >

> > > Then continue to enjoy your life. Don't focus on the MSA. Why

> do I say

> > > this? Well, you yourself mention the symptoms are progressing

> slowly.

> > > Also you mention:

> > >

> > > I had difficulty in walking fast, in buttoning

> > > clothes, and in tying my shoes. Occasionally,

> > > I had slurred speech, hunted for words, and spoke

> > > words that did not express my thoughts well. My

> > > reasoning ability remained as sharp as ever. In

> > > addition, I occasionally realized that I had not

> > > taken a breath in a while, and I would gasp for air.

> > >

> > > It appears you have MSA-C, that is symptoms that start as

> Sporadic OPCA.

> > > Or MSA-C (since it progressed into autonomic problems). You may

> want to

> > > view the following pages:

> > >

> > > http://emedicine.com/neuro/topic671.htm Multiple Systems

> Atrophy

> > > http://emedicine.com/neuro/topic282.htm OPCA (MSA-C)

> > > http://emedicine.com/neuro/topic354.htm SND (MSA-P)

> > >

> > > Sporadic OPCA is the second item. But you will note that based

> on your

> > > symptoms, it appears to have shifted quite clearly into MSA.

> Since it

> > > started with problems with the cerebellum, it is considered to be

> MSA-C.

> > > IF you actively control symptoms, then you stand a good chance of

> a

> > > longer life expectancy.

> > >

> > > One word of warning. With MSA-C, you need to be very careful

> about

> > > sleep and swallowing problems. The first leads to very poor

> sleep,

> > > extreme fatigue, high blood pressure, and in extreme cases, death

> during

> > > sleep. The second often leads to aspiration pneumonia, which is

> the

> > > leading cause of death for someone with MSA-C.

> > >

> > > To test problems with sleep, you might want to visit the

> following page:

> > >

> > > http://www.sleepnet.com/sleeptest.html

> > >

> > > If you find yourself swallowing food incorrectly, please go have a

> > > swallowing test done. There are specific therapies to help

> improve

> > > swallowing problems. In extreme cases a feeding tube can be

> inserted

> > > directly into the stomach. This greatly reduces the chance of

> > > aspiration pneumonia. But that is most likely a LONG way done

> the line.

> > >

> > > And you will get an idea that it is time, when you find you are

> less and

> > > less able to move around your own home. Be certain to discuss

> this with

> > > your doctor / neurologist. They should be able to have you work

> with a

> > > physical therapist to determine when it is time to move.

> > >

> > > Anyway, just some thoughts...

> > >

> > >

> > > Regards,

> > > =jbf=

> > >

> > > B. Fisher

> > >

> > >

> > > If you do not wish to belong to shydrager, you may

> > > unsubscribe by sending a blank email to

> > >

> > > shydrager-unsubscribe@y...

> > >

> > >

> > >

> > >

> > >

[Guest guest]

Bill:

Thanks for the information. I hope you are wrong, though, about how long it will be before I'll need a wheelchair -- I have too much yet to accomplish (see my reply to Jan). I am taking brisk walks and I'm doing fitness exercises at a local gym to forestall that.

I am just taking ibuprofen and Tylenol for pain, and they have not affected me like this in the past. I think it is the neurological condition and the medication I am taking for it that make me feel hot all the time and make me sweat profusely and short of breath with just moderate exertion.

Byron

Re: New Diagnosis

Bryon, Welcome to the list, sorry you had to find us. On your specific question of "How long", there is no easy answer. made an excellent suggestion of at least look now and see what your options are for the future. Since you seem to have had it for 2-3 years, AND assuming the diagnoses is correct, I would guess you need to plan on needing a wheelchair in 1-3 years. If it is truly MSA, you will need at least some help at that time also and full time help with getting around, baths, etc. within two years after that. It IS still possible that you have a lesser brain disorder. What are you taking for the pain you mention? The statement "but I developed new problems: a feeling of being hot all the time and sweating profusely and shortness of breath with only moderate exertion." could point to some side effects of painkillers. With exercise, you may be able to keep some computer use for a number of years yet, my wife used a computer almost 11 years after her original dx of PD and six after the dx of MSA. Typing will become increasingly difficult over the years. The cognitive skills are not affected (usually) as much as information sorting and usage are affected. Short term memory loss CAN be caused by an infection. Info processing becomes a major problem and therefore driving a car becomes impossible (probably the first thing you will lose). Hope this helps, Bill Werre ------------------------------------------------ Byron Hall wrote:

Dear Folks: Three years ago, I began feeling like I was slowing down. I had difficulty in walking fast, in buttoning clothes, and in tying my shoes. Occasionally, I had slurred speech, hunted for words, and spoke words that did not express my thoughts well. My reasoning ability remained as sharp as ever. In addition, I occasionally realized that I had not taken a breath in a while, and I would gasp for air. Two years ago, I was diagnosed by a neurologist as having early stages of bradykinetic Parkinson's disease, and I began taking medications for that condition. Early this year, after discontinuing Requip because it caused me to retain water (I gained 18 pounds in 3 months), I began having a terrible burning sensation in my legs when they were exposed to cold. Changing medication has helped with that problem, but I developed new problems: a feeling of being hot all the time and sweating profusely and shortness of breath with only moderate exertion. I thought I needed a new viewpoint of my problems, so last week I went to the Cleveland Clinic for a second opinion; the new diagnosis is that I have shy drager syndrome. I have been looking up information on this condition, finding the Vanderbilt University web site and then this chat room. I was shocked to see how grim the end process is. Having recovered from the initial shock, I'm faced with having to make plans for this end process. My gut feeling, based upon the slowness of the deterioration so far, is that I'll be one of those who survive for 20 years, but, of course, that is by no means certain. My problem is that I will have no potential caregiver. I am a 64-year old bachelor with no siblings. My father died last year at the age of 93, and while my mother is still living and active, I do not expect she will be around when I need care. I have taken out a long-term care policy, however. I need to decide when I should sell my condo and move into a facility which offers the care I'll need when the time comes. Does anyone have any suggestions that would help me to decide when to make the move? Byron If you do not wish to belong to shydrager, you may unsubscribe by sending a blank email to shydrager-unsubscribe

[Guest guest]

Dear Byron,

Don't panic. That is the first place to start. You will find a lot of

helpful information and support from this group. I was a member here for

over a year, lurking about, reading, etc. until I decided a couple of months

ago to speak out.

I was diagnosed with Parkinson's Disease in July 1999 at the age of 37 and

MSA in September 2000 at the age of 38. I had symptoms from 1997. When I

was diagnosed, I was a department head at a University in Louisiana running

their computer network, single mother of 2 teenagers and very very much

alone.

I had to make a lot of decisions about my future based on a lot of

uncertainty. That is what makes this disease so difficult. Because there

is no definitive diagnosis until autopsy, I kept holding onto the fact that

the doctors must have made a wrong diagnosis and time would prove them

wrong. People will tell you that everyone's symptoms are different and not

to judge what you experience on what others are experiencing. This is true.

While we share similarities, none of us are the same so there is no time

table for when you should do or not do something. For me, I knew when I

needed to start making arrangements for my children and for retirement. My

body gave me the signals.

What I didn't know was that I was going to meet a terrific, healthy, man

who would fall helplessly in love with me in spite of this disease and marry

me. Our first wedding anniversary is this Friday. My thoughts at the time

were more along the line of who would ever want me now? disabled? dying?

sickly? needy? etc.

What I am trying to convey is just because you can't see it, doesn't mean

it isn't there. You do not have to give up living NOW, nor do you have to

give in to this disease, ever. While it may take your body, part by part,

it leaves your mind and its ability to do things differently. Make your

decisions for living, not suffering and dying. Be sensible and listen to

your body, make your contingency plans but don't give up living just because

someone gave a name to your symptoms.

Get a good psychologist or counselor who can help you work through the

emotional aspects of this disease, find a support group in your area even if

there is not one for MSA, there might be one for a similar disorder. (I went

to the support groups for Parkinson's disease because that is what my

symptoms most closely resembled in the beginning). Listen to the others on

this list... they have already traveled or are traveling the road that you

are on. Have faith and keep hope alive. Attitude goes a long way.

I'm sure others will give you more concrete advice about what to do. I

just wanted to send you hope that our life has not ended because of this

disease... it has just changed.

Hugs and Warm Fuzzies,

Deborah aka Tenacity

_________________________________________________________________

Send and receive Hotmail on your mobile device: http://mobile.msn.com

[Guest guest]

Bryron,

I hope I am wrong too. That assessment is for true MSA and if

you are still walking, it is not certain what you have MSA. It sounds

like MSA, but still could be LBD, PAF, or many other brain disorders.

Many of them give you more time Even with MSA, they could make a

breakthrough within five years and give you more time or possibly even

come up with a cure. I am just saying you should plan for this timeframe

- that is what you asked - a planning time. Speech could become a

serious problem within a few years and making telephone contacts at that

time will be much more difficult, do it now while you have speech.

Note that there is a bill before Congress right now which could affect

a cure for MSA, Parkinson's, Juvenile diabetes, some cancers and other

diseases. The Brownback Anti cloning Bill will ban existing cancer

cures and make the all stem cell (including adult stem cell) research illegal

in the USA as the definition of stem cells is cells that will reproduce

themselves indefinitely (clones). On the other hand, the Senate bipartisan

Feinstein Bill backed by Hatch (R-UT), Spector (R-PA) and Kennedy (D-MA)

will totally ban any form of cloning a human being even for "body parts

such as arms, legs, hands, fingers, organs, etc." and still permit growing

human cells. This view is backed by the foremost adult stem cell

as well as embryonic stem cell scientists.

If the Brownback Bill passes, it may even be against the law to go to

another country to get the cure if they find one. Urge your Senator

to vote YES for the Feinstein Bill and NO for the Brownback Bill.

Take care, Bill Werre

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

Byron Hall wrote:

Bill: Thanks

for the information. I hope you are wrong, though, about how long

it will be before I'll need a wheelchair -- I have too much yet to accomplish

(see my reply to Jan). I am taking brisk walks and I'm doing fitness

exercises at a local gym to forestall that. I

am just taking ibuprofen and Tylenol for pain, and they have not affected

me like this in the past. I think it is the neurological condition

and the medication I am taking for it that make me feel hot all the time

and make me sweat profusely and short of breath with just moderate exertion. Byron

Re: New Diagnosis

Bryon,

Welcome to the list, sorry you had to find us. On your specific

question of "How long", there is no easy answer. made an excellent

suggestion of at least look now and see what your options are for the future.

Since you seem to have had it for 2-3 years, AND assuming the diagnoses

is correct, I would guess you need to plan on needing a wheelchair in 1-3

years. If it is truly MSA, you will need at least some help at that

time also and full time help with getting around, baths, etc. within two

years after that. It IS still possible that you have a lesser brain

disorder.

What are you taking for the pain you mention? The statement "but

I developed new problems: a feeling of being hot all the time and sweating

profusely and shortness of breath with only moderate exertion."

could point to some side

effects of painkillers.

With exercise, you may be able to

keep some computer use for a number of years yet, my wife used a computer

almost 11 years after her original dx of PD and six after the dx of MSA.

Typing will become increasingly difficult over the years.

The cognitive skills are not affected

(usually) as much as information sorting and usage are affected.

Short term memory loss CAN be caused by an infection. Info processing

becomes a major problem and therefore driving a car becomes impossible

(probably the first thing you will lose).

Hope this helps, Bill Werre

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

Byron Hall wrote:

Dear

Folks:

Three years ago, I began feeling like I was slowing down. I had difficulty

in walking fast, in buttoning clothes, and in tying my shoes. Occasionally,

I had slurred speech, hunted for words, and spoke words that did not express

my thoughts well. My reasoning ability remained as sharp as ever.

In addition, I occasionally realized that I had not taken a breath in a

while, and I would gasp for air. Two years ago, I was diagnosed by

a neurologist as having early stages of bradykinetic Parkinson's disease,

and I began taking medications for that condition. Early this year,

after discontinuing Requip because it caused me to retain water (I gained

18 pounds in 3 months), I began having a terrible burning sensation in

my legs when they were exposed to cold. Changing medication has helped

with that problem, but I developed new problems: a feeling of being hot

all the time and sweating profusely and shortness of breath with only moderate

exertion. I thought I needed a new viewpoint of my problems, so last

week I went to the Cleveland Clinic for a second opinion; the new diagnosis

is that I have shy drager syndrome.

I have been looking up information on this condition, finding the Vanderbilt

University web site and then this chat room. I was shocked to see

how grim the end process is. Having recovered from the initial shock,

I'm faced with having to make plans for this end process. My gut

feeling, based upon the slowness of the deterioration so far, is that I'll

be one of those who survive for 20 years, but, of course, that is by no

means certain. My problem is that I will have no potential caregiver.

I am a 64-year old bachelor with no siblings. My father died last

year at the age of 93, and while my mother is still living and active,

I do not expect she will be around when I need care. I have taken

out a long-term care policy, however. I need to decide when I should sell

my condo and move into a facility which offers the care I'll need when

the time comes. Does anyone have any suggestions that would help

me to decide when to make the move? Byron

If you do not wish to belong to shydrager, you may

unsubscribe by sending a blank email to

shydrager-unsubscribe

[Guest guest]

Dear Deborah:

Thank you for your kind and thoughtful message.

Through many bumpy life experiences, I have learned to " play the hand

you're dealt, " but I have not been dealt a hand like this before. After the

initial shock that this condition leads to total dependency and death in a

time frame much shorter than I had expected, my attitude became one of: " OK,

so what steps do I need to take to prepare for the end stages of this

condition, and how can I make the best use of the time I have left before I

can no longer function well enough to accomplish anything? " It is my hope

that I can postpone my grieving until the last stages in which I can do

little else.

I am glad this group exists for education and support. I plan to keep

reading the messages and putting in my 2 cents worth, but I will not be

consumed by this condition; I have more contributions I can make to

humankind -- I just have less time to complete my work than I had thought.

Best wishes,

Byron

Re: New Diagnosis

> Dear Byron,

>

> Don't panic. That is the first place to start. You will find a lot of

> helpful information and support from this group. I was a member here for

> over a year, lurking about, reading, etc. until I decided a couple of

months

> ago to speak out.

>

> I was diagnosed with Parkinson's Disease in July 1999 at the age of 37

and

> MSA in September 2000 at the age of 38. I had symptoms from 1997. When I

> was diagnosed, I was a department head at a University in Louisiana

running

> their computer network, single mother of 2 teenagers and very very much

> alone.

>

> I had to make a lot of decisions about my future based on a lot of

> uncertainty. That is what makes this disease so difficult. Because there

> is no definitive diagnosis until autopsy, I kept holding onto the fact

that

> the doctors must have made a wrong diagnosis and time would prove them

> wrong. People will tell you that everyone's symptoms are different and not

> to judge what you experience on what others are experiencing. This is

true.

> While we share similarities, none of us are the same so there is no time

> table for when you should do or not do something. For me, I knew when I

> needed to start making arrangements for my children and for retirement.

My

> body gave me the signals.

>

> What I didn't know was that I was going to meet a terrific, healthy, man

> who would fall helplessly in love with me in spite of this disease and

marry

> me. Our first wedding anniversary is this Friday. My thoughts at the

time

> were more along the line of who would ever want me now? disabled? dying?

> sickly? needy? etc.

>

> What I am trying to convey is just because you can't see it, doesn't

mean

> it isn't there. You do not have to give up living NOW, nor do you have to

> give in to this disease, ever. While it may take your body, part by part,

> it leaves your mind and its ability to do things differently. Make your

> decisions for living, not suffering and dying. Be sensible and listen to

> your body, make your contingency plans but don't give up living just

because

> someone gave a name to your symptoms.

>

> Get a good psychologist or counselor who can help you work through the

> emotional aspects of this disease, find a support group in your area even

if

> there is not one for MSA, there might be one for a similar disorder. (I

went

> to the support groups for Parkinson's disease because that is what my

> symptoms most closely resembled in the beginning). Listen to the others

on

> this list... they have already traveled or are traveling the road that you

> are on. Have faith and keep hope alive. Attitude goes a long way.

>

> I'm sure others will give you more concrete advice about what to do. I

> just wanted to send you hope that our life has not ended because of this

> disease... it has just changed.

>

> Hugs and Warm Fuzzies,

> Deborah aka Tenacity

>

> _________________________________________________________________

> Send and receive Hotmail on your mobile device: http://mobile.msn.com

>

>

> If you do not wish to belong to shydrager, you may

> unsubscribe by sending a blank email to

>

> shydrager-unsubscribe

>

>

>

>

>

[Guest guest]

Dear Deborah: Your beautiful letter to Byron should be an inspiration to

all. Winifred

Re: New Diagnosis

> Dear Byron,

>

> Don't panic. That is the first place to start. You will find a lot of

> helpful information and support from this group. I was a member here for

> over a year, lurking about, reading, etc. until I decided a couple of

months

> ago to speak out.

>

> I was diagnosed with Parkinson's Disease in July 1999 at the age of 37

and

> MSA in September 2000 at the age of 38. I had symptoms from 1997. When I

> was diagnosed, I was a department head at a University in Louisiana

running

> their computer network, single mother of 2 teenagers and very very much

> alone.

>

> I had to make a lot of decisions about my future based on a lot of

> uncertainty. That is what makes this disease so difficult. Because there

> is no definitive diagnosis until autopsy, I kept holding onto the fact

that

> the doctors must have made a wrong diagnosis and time would prove them

> wrong. People will tell you that everyone's symptoms are different and not

> to judge what you experience on what others are experiencing. This is

true.

> While we share similarities, none of us are the same so there is no time

> table for when you should do or not do something. For me, I knew when I

> needed to start making arrangements for my children and for retirement.

My

> body gave me the signals.

>

> What I didn't know was that I was going to meet a terrific, healthy, man

> who would fall helplessly in love with me in spite of this disease and

marry

> me. Our first wedding anniversary is this Friday. My thoughts at the

time

> were more along the line of who would ever want me now? disabled? dying?

> sickly? needy? etc.

>

> What I am trying to convey is just because you can't see it, doesn't

mean

> it isn't there. You do not have to give up living NOW, nor do you have to

> give in to this disease, ever. While it may take your body, part by part,

> it leaves your mind and its ability to do things differently. Make your

> decisions for living, not suffering and dying. Be sensible and listen to

> your body, make your contingency plans but don't give up living just

because

> someone gave a name to your symptoms.

>

> Get a good psychologist or counselor who can help you work through the

> emotional aspects of this disease, find a support group in your area even

if

> there is not one for MSA, there might be one for a similar disorder. (I

went

> to the support groups for Parkinson's disease because that is what my

> symptoms most closely resembled in the beginning). Listen to the others

on

> this list... they have already traveled or are traveling the road that you

> are on. Have faith and keep hope alive. Attitude goes a long way.

>

> I'm sure others will give you more concrete advice about what to do. I

> just wanted to send you hope that our life has not ended because of this

> disease... it has just changed.

>

> Hugs and Warm Fuzzies,

> Deborah aka Tenacity

>

> _________________________________________________________________

> Send and receive Hotmail on your mobile device: http://mobile.msn.com

>

>

> If you do not wish to belong to shydrager, you may

> unsubscribe by sending a blank email to

>

> shydrager-unsubscribe

>

>

>

>

>

[Guest guest]

Bill and Byron,

While I agree completely with what Bill has said in response to your time-line question, the most important thing I have learned on this list is that every patient is different and progresses at a different rate.

My husband Rob was diagnosed 4 years ago. His illness has certainly progressed in that time, but his symptoms are primarily autonomic and parkinsonian and so far he is still walking well, albeit a slower than before. He has commented that his balance feels worse, but he has yet to take a fall, which I think is a good sign. Of course we can't know for sure that his illness is MSA, but his doctor is an expert in the field and believes that MSA is the most likely diagnosis.

Bryon, keep exercising and push yourself to do as much as you can but know your limits. That's the best medicine there is right now.

Carol & Rob

Lexington, MA

Re: New Diagnosis Bryon, Welcome to the list, sorry you had to find us. On your specific question of "How long", there is no easy answer. made an excellent suggestion of at least look now and see what your options are for the future. Since you seem to have had it for 2-3 years, AND assuming the diagnoses is correct, I would guess you need to plan on needing a wheelchair in 1-3 years. If it is truly MSA, you will need at least some help at that time also and full time help with getting around, baths, etc. within two years after that. It IS still possible that you have a lesser brain disorder. What are you taking for the pain you mention? The statement "but I developed new problems: a feeling of being hot all the time and sweating profusely and shortness of breath with only moderate exertion." could point to some side effects of painkillers. With exercise, you may be able to keep some computer use for a number of years yet, my wife used a computer almost 11 years after her original dx of PD and six after the dx of MSA. Typing will become increasingly difficult over the years. The cognitive skills are not affected (usually) as much as information sorting and usage are affected. Short term memory loss CAN be caused by an infection. Info processing becomes a major problem and therefore driving a car becomes impossible (probably the first thing you will lose). Hope this helps, Bill Werre ------------------------------------------------ Byron Hall wrote:

Dear Folks: Three years ago, I began feeling like I was slowing down. I had difficulty in walking fast, in buttoning clothes, and in tying my shoes. Occasionally, I had slurred speech, hunted for words, and spoke words that did not express my thoughts well. My reasoning ability remained as sharp as ever. In addition, I occasionally realized that I had not taken a breath in a while, and I would gasp for air. Two years ago, I was diagnosed by a neurologist as having early stages of bradykinetic Parkinson's disease, and I began taking medications for that condition. Early this year, after discontinuing Requip because it caused me to retain water (I gained 18 pounds in 3 months), I began having a terrible burning sensation in my legs when they were exposed to cold. Changing medication has helped with that problem, but I developed new problems: a feeling of being hot all the time and sweating profusely and shortness of breath with only moderate exertion. I thought I needed a new viewpoint of my problems, so last week I went to the Cleveland Clinic for a second opinion; the new diagnosis is that I have shy drager syndrome. I have been looking up information on this condition, finding the Vanderbilt University web site and then this chat room. I was shocked to see how grim the end process is. Having recovered from the initial shock, I'm faced with having to make plans for this end process. My gut feeling, based upon the slowness of the deterioration so far, is that I'll be one of those who survive for 20 years, but, of course, that is by no means certain. My problem is that I will have no potential caregiver. I am a 64-year old bachelor with no siblings. My father died last year at the age of 93, and while my mother is still living and active, I do not expect she will be around when I need care. I have taken out a long-term care policy, however. I need to decide when I should sell my condo and move into a facility which offers the care I'll need when the time comes. Does anyone have any suggestions that would help me to decide when to make the move? Byron If you do not wish to belong to shydrager, you may unsubscribe by sending a blank email to shydrager-unsubscribe

[Guest guest]

Dear Byron,

I am so sorry that you have found a need for this group but am so

glad that you have. There is a lot of knowledge here in this group.

We are either going through this with you or a caregiver to someone

who is. We are also blessed with caregivers whose loved ones had

already passed away who still give their time and knowledge of

experience and keeping up todate with new findings to help the rest

of us. I have a lot of the symptoms that you have described below. I

am sorry that you have no one close to you to rely on but glad that

you are preparing for the time when you will need help. It is very

important to be realistic in this disease, at least I feel that way.

How smart you were to take out a long term care policy. I have only

wished that we had done the same thing. I never dreamed I was this

sick. I had thought it was just something that would go away and

didn't need to worry with it. I was wrong. That is why I feel it is

better to be realistic. My speech is getting worse and my family is

having a harder time understanding what I am saying. Just because

mine has does not mean yours will get that bad. Again, I welcome you

to the group.

God bless,

Belinda

> Dear Folks:

>

> Three years ago, I began feeling like I was slowing down. I

had difficulty in walking fast, in buttoning clothes, and in tying my

shoes. Occasionally, I had slurred speech, hunted for words, and

spoke words that did not express my thoughts well. My reasoning

ability remained as sharp as ever. In addition, I occasionally

realized that I had not taken a breath in a while, and I would gasp

for air. Two years ago, I was diagnosed by a neurologist as having

early stages of bradykinetic Parkinson's disease, and I began taking

medications for that condition. Early this year, after discontinuing

Requip because it caused me to retain water (I gained 18 pounds in 3

months), I began having a terrible burning sensation in my legs when

they were exposed to cold. Changing medication has helped with that

problem, but I developed new problems: a feeling of being hot all the

time and sweating profusely and shortness of breath with only

moderate exertion. I thought I needed a new viewpoint of my

problems, so last week I went to the Cleveland Clinic for a second

opinion; the new diagnosis is that I have shy drager syndrome.

>

> I have been looking up information on this condition, finding

the Vanderbilt University web site and then this chat room. I was

shocked to see how grim the end process is. Having recovered from

the initial shock, I'm faced with having to make plans for this end

process. My gut feeling, based upon the slowness of the

deterioration so far, is that I'll be one of those who survive for 20

years, but, of course, that is by no means certain. My problem is

that I will have no potential caregiver. I am a 64-year old bachelor

with no siblings. My father died last year at the age of 93, and

while my mother is still living and active, I do not expect she will

be around when I need care. I have taken out a long-term care

policy, however. I need to decide when I should sell my condo and

move into a facility which offers the care I'll need when the time

comes. Does anyone have any suggestions that would help me to decide

when to make the move?

>

> Byron

[Guest guest]

Bryon,

The books you are writing sounds so interesting! I would love to buy

them once you have them published. Please let us know when that

happens. How wonderful also to know the loyalty you have to your

friend even after their passing.

God bless,

Belinda

> > > Thanks for the information and advice. I'll look at the

resources

> > you have

> > > given.

> > >

> > > Yes, I want to get on with my life, as soon as possible. I have

> > been

> > > semi-retired from teaching since June of 2001. I plan to teach

> > just one

> > > course per quarter as long as my health permits. Also, I am

> > chairman and

> > > CEO of a non-profit foundation; I have to drive 500 miles to

attend

> > meetings

> > > of the Board of Directors. I have written 67% of each of two

> > books, and I

> > > have an outline in my mind for a third. I have long planned for

> > these as my

> > > retirement activities, and I will do my utmost to keep this

newly-

> > discovered

> > > condition from interfering with them.

> > >

> > > I note in the June 22 TV interview, there is cognitive

impairment

> > associated

> > > with this condition. I wonder if continuing to learn something

> > new, so that

> > > new neural pathways are activated, will help to forestall

this. For

> > > example, I was forced to learn a lot about two areas of the law

> > when my

> > > foundation was involved in a lawsuit and I was actively

involved in

> > the

> > > process (law is not my chosen field), even presenting part of

the

> > oral

> > > argument before an appeals court last year. We'll see.

> > >

> > > Thanks again for your help.

> > >

> > > Byron

> > >

> > > RE: New Diagnosis

> > >

> > >

> > > > Greetings Byron!

> > > >

> > > > Sorry you have to be here, but hopefully you will find the

> > support you

> > > > need here.

> > > >

> > > > Yes, a long-term care policy is vital for someone with MSA

(the

> > new name

> > > > for Shy-Drager). When my work offered it, shortly after

symptoms

> > > > surfaced, I decided to purchase it.

> > > >

> > > > When to look into different housing? I would recommend now.

> > Find out

> > > > what facilities are available now. Find out how long the

waiting

> > lists

> > > > are. Determine which set of facilities appear to have the

best

> > ongoing

> > > > care. Likewise be certain to make out wills and the like.

> > > >

> > > > Then continue to enjoy your life. Don't focus on the MSA.

Why

> > do I say

> > > > this? Well, you yourself mention the symptoms are progressing

> > slowly.

> > > > Also you mention:

> > > >

> > > > I had difficulty in walking fast, in buttoning

> > > > clothes, and in tying my shoes. Occasionally,

> > > > I had slurred speech, hunted for words, and spoke

> > > > words that did not express my thoughts well. My

> > > > reasoning ability remained as sharp as ever. In

> > > > addition, I occasionally realized that I had not

> > > > taken a breath in a while, and I would gasp for air.

> > > >

> > > > It appears you have MSA-C, that is symptoms that start as

> > Sporadic OPCA.

> > > > Or MSA-C (since it progressed into autonomic problems). You

may

> > want to

> > > > view the following pages:

> > > >

> > > > http://emedicine.com/neuro/topic671.htm Multiple Systems

> > Atrophy

> > > > http://emedicine.com/neuro/topic282.htm OPCA (MSA-C)

> > > > http://emedicine.com/neuro/topic354.htm SND (MSA-P)

> > > >

> > > > Sporadic OPCA is the second item. But you will note that

based

> > on your

> > > > symptoms, it appears to have shifted quite clearly into MSA.

> > Since it

> > > > started with problems with the cerebellum, it is considered

to be

> > MSA-C.

> > > > IF you actively control symptoms, then you stand a good

chance of

> > a

> > > > longer life expectancy.

> > > >

> > > > One word of warning. With MSA-C, you need to be very careful

> > about

> > > > sleep and swallowing problems. The first leads to very poor

> > sleep,

> > > > extreme fatigue, high blood pressure, and in extreme cases,

death

> > during

> > > > sleep. The second often leads to aspiration pneumonia, which

is

> > the

> > > > leading cause of death for someone with MSA-C.

> > > >

> > > > To test problems with sleep, you might want to visit the

> > following page:

> > > >

> > > > http://www.sleepnet.com/sleeptest.html

> > > >

> > > > If you find yourself swallowing food incorrectly, please go

have a

> > > > swallowing test done. There are specific therapies to help

> > improve

> > > > swallowing problems. In extreme cases a feeding tube can be

> > inserted

> > > > directly into the stomach. This greatly reduces the chance of

> > > > aspiration pneumonia. But that is most likely a LONG way done

> > the line.

> > > >

> > > > And you will get an idea that it is time, when you find you

are

> > less and

> > > > less able to move around your own home. Be certain to discuss

> > this with

> > > > your doctor / neurologist. They should be able to have you

work

> > with a

> > > > physical therapist to determine when it is time to move.

> > > >

> > > > Anyway, just some thoughts...

> > > >

> > > >

> > > > Regards,

> > > > =jbf=

> > > >

> > > > B. Fisher

> > > >

> > > >

> > > > If you do not wish to belong to shydrager, you may

> > > > unsubscribe by sending a blank email to

> > > >

> > > > shydrager-unsubscribe@y...

> > > >

> > > >

> > > >

> > > >

> > > >

[Guest guest]

Bryon,

I second that opinion. Very good advise and remember we want to know

when you publish your first book!

Belinda (that was good, it only took me 3 times to type my name right)

> Dear Byron,

>

> Don't panic. That is the first place to start. You will find a

lot of

> helpful information and support from this group. I was a member

here for

> over a year, lurking about, reading, etc. until I decided a couple

of months

> ago to speak out.

>

> I was diagnosed with Parkinson's Disease in July 1999 at the age

of 37 and

> MSA in September 2000 at the age of 38. I had symptoms from 1997.

When I

> was diagnosed, I was a department head at a University in Louisiana

running

> their computer network, single mother of 2 teenagers and very very

much

> alone.

>

> I had to make a lot of decisions about my future based on a lot

of

> uncertainty. That is what makes this disease so difficult.

Because there

> is no definitive diagnosis until autopsy, I kept holding onto the

fact that

> the doctors must have made a wrong diagnosis and time would prove

them

> wrong. People will tell you that everyone's symptoms are different

and not

> to judge what you experience on what others are experiencing. This

is true.

> While we share similarities, none of us are the same so there is

no time

> table for when you should do or not do something. For me, I knew

when I

> needed to start making arrangements for my children and for

retirement. My

> body gave me the signals.

>

> What I didn't know was that I was going to meet a terrific,

healthy, man

> who would fall helplessly in love with me in spite of this disease

and marry

> me. Our first wedding anniversary is this Friday. My thoughts at

the time

> were more along the line of who would ever want me now? disabled?

dying?

> sickly? needy? etc.

>

> What I am trying to convey is just because you can't see it,

doesn't mean

> it isn't there. You do not have to give up living NOW, nor do you

have to

> give in to this disease, ever. While it may take your body, part

by part,

> it leaves your mind and its ability to do things differently. Make

your

> decisions for living, not suffering and dying. Be sensible and

listen to

> your body, make your contingency plans but don't give up living

just because

> someone gave a name to your symptoms.

>

> Get a good psychologist or counselor who can help you work

through the

> emotional aspects of this disease, find a support group in your

area even if

> there is not one for MSA, there might be one for a similar

disorder. (I went

> to the support groups for Parkinson's disease because that is what

my

> symptoms most closely resembled in the beginning). Listen to the

others on

> this list... they have already traveled or are traveling the road

that you

> are on. Have faith and keep hope alive. Attitude goes a long way.

>

> I'm sure others will give you more concrete advice about what to

do. I

> just wanted to send you hope that our life has not ended because of

this

> disease... it has just changed.

>

> Hugs and Warm Fuzzies,

> Deborah aka Tenacity

>

> _________________________________________________________________

> Send and receive Hotmail on your mobile device:

http://mobile.msn.com

[Guest guest]

Dear Belinda:

I feel flattered that you think that my books will be interesting. I

think the book of the effort to preserve the farm and the book on

interesting people will be of general interest, while the book on ethics

will be a bit heavy, but it will be controversial enough in academic circles

to spur interest. I just hope my health holds up long enough for me to

write them.

I need to await the final outcome of things to complete the book on

preserving the farm (probably a year); I have completed the writing of

everything I can up to that point. It will take a good 3 years of thought

and research to complete the book on ethics. I could whip out the book on

interesting people in 6 months. In the meantime, I have many other things

to do, so I'm nether idle nor bored.

Byron

RE: New Diagnosis

> > > >

> > > >

> > > > > Greetings Byron!

> > > > >

> > > > > Sorry you have to be here, but hopefully you will find the

> > > support you

> > > > > need here.

> > > > >

> > > > > Yes, a long-term care policy is vital for someone with MSA

> (the

> > > new name

> > > > > for Shy-Drager). When my work offered it, shortly after

> symptoms

> > > > > surfaced, I decided to purchase it.

> > > > >

> > > > > When to look into different housing? I would recommend now.

> > > Find out

> > > > > what facilities are available now. Find out how long the

> waiting

> > > lists

> > > > > are. Determine which set of facilities appear to have the

> best

> > > ongoing

> > > > > care. Likewise be certain to make out wills and the like.

> > > > >

> > > > > Then continue to enjoy your life. Don't focus on the MSA.

> Why

> > > do I say

> > > > > this? Well, you yourself mention the symptoms are progressing

> > > slowly.

> > > > > Also you mention:

> > > > >

> > > > > I had difficulty in walking fast, in buttoning

> > > > > clothes, and in tying my shoes. Occasionally,

> > > > > I had slurred speech, hunted for words, and spoke

> > > > > words that did not express my thoughts well. My

> > > > > reasoning ability remained as sharp as ever. In

> > > > > addition, I occasionally realized that I had not

> > > > > taken a breath in a while, and I would gasp for air.

> > > > >

> > > > > It appears you have MSA-C, that is symptoms that start as

> > > Sporadic OPCA.

> > > > > Or MSA-C (since it progressed into autonomic problems). You

> may

> > > want to

> > > > > view the following pages:

> > > > >

> > > > > http://emedicine.com/neuro/topic671.htm Multiple Systems

> > > Atrophy

> > > > > http://emedicine.com/neuro/topic282.htm OPCA (MSA-C)

> > > > > http://emedicine.com/neuro/topic354.htm SND (MSA-P)

> > > > >

> > > > > Sporadic OPCA is the second item. But you will note that

> based

> > > on your

> > > > > symptoms, it appears to have shifted quite clearly into MSA.

> > > Since it

> > > > > started with problems with the cerebellum, it is considered

> to be

> > > MSA-C.

> > > > > IF you actively control symptoms, then you stand a good

> chance of

> > > a

> > > > > longer life expectancy.

> > > > >

> > > > > One word of warning. With MSA-C, you need to be very careful

> > > about

> > > > > sleep and swallowing problems. The first leads to very poor

> > > sleep,

> > > > > extreme fatigue, high blood pressure, and in extreme cases,

> death

> > > during

> > > > > sleep. The second often leads to aspiration pneumonia, which

> is

> > > the

> > > > > leading cause of death for someone with MSA-C.

> > > > >

> > > > > To test problems with sleep, you might want to visit the

> > > following page:

> > > > >

> > > > > http://www.sleepnet.com/sleeptest.html

> > > > >

> > > > > If you find yourself swallowing food incorrectly, please go

> have a

> > > > > swallowing test done. There are specific therapies to help

> > > improve

> > > > > swallowing problems. In extreme cases a feeding tube can be

> > > inserted

> > > > > directly into the stomach. This greatly reduces the chance of

> > > > > aspiration pneumonia. But that is most likely a LONG way done

> > > the line.

> > > > >

> > > > > And you will get an idea that it is time, when you find you

> are

> > > less and

> > > > > less able to move around your own home. Be certain to discuss

> > > this with

> > > > > your doctor / neurologist. They should be able to have you

> work

> > > with a

> > > > > physical therapist to determine when it is time to move.

> > > > >

> > > > > Anyway, just some thoughts...

> > > > >

> > > > >

> > > > > Regards,

> > > > > =jbf=

> > > > >

> > > > > B. Fisher

> > > > >

> > > > >

> > > > > If you do not wish to belong to shydrager, you may

> > > > > unsubscribe by sending a blank email to

> > > > >

> > > > > shydrager-unsubscribe@y...

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

[Guest guest]

Byron,

Keep the good attitude. It will serve you well!

Hugs,

Deborah aka Tenacity

_________________________________________________________________

Join the world’s largest e-mail service with MSN Hotmail.

http://www.hotmail.com

[Guest guest]

Hi Pam,

Can you send me a copy of the letter also?

Thanks.

C.

> Welcome Alison,

>

> Sorry the link no longer works.

> I will send you a copy privately if you would like.

> We can NOT post the letter itself since it has a copy right and we

are not

> the owners.

>

> I can see your address in my header, but I believe in asking first

before

> using anyones private address. We never know the family situation

and some

> people in groups only communicate on the web site.

> ( Just something all members need to be aware of on any e mail

list )

>

> -Pam L -

>

>

[Guest guest]

Hi my name is - I have not ever written to the suppoet group

before.

I was diagnosed in Feb this year - i was in thyroid storm. Since then

i have had 2 doses of RAI the last one was in Sept.- and just recently

found out that my thyroid may be " unkillable " . This has been an

absolutely frustrating experience. I read a couple of you mention

tapazoll - what is that i have never heard of it. I am currently on

ptu.

[Guest guest]

> Hi my name is - I have not ever written to the suppoet group

> before.

> I was diagnosed in Feb this year - i was in thyroid storm. Since

> then

> i have had 2 doses of RAI the last one was in Sept.- and just

> recently

> found out that my thyroid may be " unkillable " . This has been an

> absolutely frustrating experience. I read a couple of you mention

> tapazoll - what is that i have never heard of it. I am currently on

> ptu.

Hi . I'm going away for a few days and can't offer you a fuller

answer. You will get a lot of info and support here but as you learn

more, don't kick yourself over the decisions you made while not fully

informed - just get the info you can to get well.

I feel so terrible for you and other newbies such as Carolyn, who if I

understand correctly hasn't even seen an endo yet had RAI. You will feel

better with the proper treatment. One quick thing that may not mean too

much at the moment since you're learning so much now: it's very likely

that at some point you will be hypo - you want an endo who is familiar

with all manner of thyroid hormone replacement and appreciates the value

of testing Free T3 as well as Free T4. Even if you don't need it, it says

a lot about the dr.

Take care, Fay

________________________________________________________________

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[Guest guest]

Hi ,

I'm so sorry you're having a rough time with your Graves'. Tapazole

is " the other " antithyroid medication, not very different from PTY.

However, perhaps if you post your blood tests we could help you

manage the PTU to be more effective. For instance, the package insert

says to take it in three daily doese, but doctors rarely tell you

this. There are also steps to help heal your immune system. Stress

reduction really helps, and avoiding sugar, caffeine, and staturated

fats will help as well.

It's far too soon to say your thyroid is unkillable. It can take

several years for process, so at this point you realy need to wait

and watch your bloodwork. The hyper period is actually a sign that

the thyroid is dying; apparently it can discharge extra hormones in

the process. After that you may soon becaome hypothyroid and need to

start replacement hormone, so don't hesitate to check via new blood

tests anytime you feel new symptoms.

You also need to watch for eye problems, which RAI can sometomes

trigger, such as swelling or pressure.

Welcome to the group,

B.

> Hi my name is - I have not ever written to the suppoet group

> before.

> I was diagnosed in Feb this year - i was in thyroid storm. Since

then

> i have had 2 doses of RAI the last one was in Sept.- and just

recently

> found out that my thyroid may be " unkillable " . This has been an

> absolutely frustrating experience. I read a couple of you mention

> tapazoll - what is that i have never heard of it. I am currently on

> ptu.