Multiple System Atrophy News - May 2002

May 15, 2002

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

Table of Contents

1. ARTICLE: Multiple System Atrophy-Autonomic Disorder Appears in Many

Guises

2. VIDEOS: NIH Video Webcasts on Neurodegeneration Research

3. ARTICLE: Parkinson-like Disorders

4. SPECIAL REPORTS from the 2002 Shy-Drager/MSA Annual Conference

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

1. ARTICLE: Multiple System Atrophy

Autonomic Disorder Appears in Many Guises

By Francie

See: http://www.advanceformrc.com/mrMSA.html

This article contains interviews with Don Summers, President of the

Shy-Drager/MSA Support Group and Dr. on, neurologist at the

Vanderbilt Autonomic Dysfunction Center.

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

2. VIDEOS: NIH Video Webcasts on Neurodegeneration Research

These two videos present some of the latest information on the possible

cause and potential treatment of neurodegenerative disorders.

Note: You must have RealPlayer or RealOne software to view these videos.

Free versions of these players are available online. For more information

see http://videocast.nih.gov/

----

Video 1: http://videocast.nih.gov/ram/nss032502.ram

Chaperone Suppression of Neurodegeneration in Drosophila (Fruit Flies)

Presented: Monday, March 25, 2002

Author/Sponsor: Bonini, Ph.D., University of Pennsylvania

Total Running Time: 01:07:04

Read more about Dr. Lee's research:

http://www.grg.org/ParkO2Dam.htm

http://www.uphs.upenn.edu/cndr/research1/tausyn/tausyn.htm

http://www.uphs.upenn.edu/aging/fellprog/fellows/lee.html

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

3. ARTICLE: Parkinson-like Disorders

(Thanks to Sennewald for pointing out this article)

Parkinson-like Disorders

by Abe Lieberman MD

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

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

4. SPECIAL REPORTS from the 2002 Shy-Drager/MSA Annual Conference

Held in Boston May 3 - 5, 2002

Table of Contents

a. Impressions of the Boston Conference by Bill Werre

b. Boston Meeting -- Part 1 -- Parkinson's vs MSA by Carol Langer

c. Boston Meeting -- Part 2 -- Cognitive Function by Carol Langer

d. Boston Meeting -- Part 3 -- Various Questions and Answers by Carol

Langer

----

a. Impressions of the Boston Conference by Bill Werre b.werre@...

Hi all,

Here are my impressions and thoughts on the Boston Conference.

First, I feel this was a great meeting from every aspect. The location was

terrific, for a dollar a person in a few minutes you could reach most parts

of Boston via the subway which was much nicer than most subways I have been

on. Sightseeing was easy, shopping was easy and eating places abounded.

Carol can tell you the names of the places, but there was a block long

building with every kind of food imaginable near the aquarium which was

about a 6 minute subway ride from the airport. The hotel was very nice and

my room was great.

Meetings

The doctors seem hopeful that some help is on the way and that we can see

progress within a couple of years, particularly with drugs now in human

tests. BUT a cure is still off in the future. They are hopeful that a

" major breakthrough " may even come from unrelated research such as fruit fly

genetic research. To me this more indication that we need to have an open

discussion of the morals and ethics of medical research and come up with

standards acceptable to the majority of the people in the USA rather than a

few people who make these decisions which can affect so many people. In one

case, someone mentioned that, in time - the general public would accept stem

cell research - but Tony Swartz-Lloyd pointed out that not all of us have

time to wait. ) You all know that I agree with that, and in Charlotte's

case it is already too late, so my only selfish reason at this point is to

beat this terrible disorder for others. I don't want to be telling

caregivers ten years from now to take their patient to the ER immediately.

For list members, the fiber thing was the only semi-new thing I got which we

had not pushed before. We heard confirmations of things the list has

pushed - hydration, work with doctor to control BP, exercise helps control

symptoms, etc. There was a confirmation also of our recent discussion of

the " brain fog " in that there is a slight frontal lobe deterioration in some

to many patients (as yet not described carefully in literature) which causes

a slight reasoning problem. This is probably the " brain fog " that

Fisher and others have described. While it is a problem with handling

logical decisions and working at a job, it is no where near dementia. )

I know , it IS still a problem, but so is balance or movement. I do

stand corrected that it is a symptom of MSA, however it is still more of a

problem in PSP or CBGD.

Name of the disorder - several doctors are not happy with MSA as a name, but

it is the " official name " at this time. Doctors admit that MSA may still be

several related or even unrelated disorders and that more research is needed

to identify it. There is even a question of how related to PD it is, so

Parkinson's Plus is not an ideal name. So like the disorder, this is a

tough question.

I feel the topics discussed were also great. We had a wide variety of

topics ) even one on handling crappy details ) Dr. Anastopoulis is a

specialist in the digestive system and really pushed eating a high fiber

diet - but one that the patient could tolerate, especially a diet high in

citrus fruits and dried fruits such as raisins. prunes, etc. He also pushed

hydrating any fiber before it went into your body. Things like mixing any

fiber supplement with something like applesauce or pudding is much better

than taking a fiber pill, which may or may not dissolve correctly in the

body. He advocates saving medical procedures for emergency use and working

on diet to obtain regularity as much as possible.

The people at the conference was the same as the list, everything from a

great knowledge of the disorder to newbies who knew nothing about it. While

this is good, it does create problems as everyone wants to learn something

different. Experienced people want to learn current directions in care and

research, while newbies just want to know what is going on with their lives

and what is coming. Experienced people are talking doctorese such as

ataxia, dysphagia and orthostatic hypotension and some newbies have no clue

as to what we are talking about. ) Actually I had no idea of some words

the doctors used - but got some meaning from context of the discussion.

Carol and I spoke for a few minutes each about starting a support group

and contrasted our two groups. We also pointed out that Charmayne's group

started as a picnic in a park and moved to the same type as Carol's group

with formal meetings. Suggested that every group may need to start in a

living room or park with a couple of members and move to what the people

want. You can also just have a telephone support call to a member nearby to

help each other. I know of several people on the list who call each other

often.

Sunday morning we (about a dozen caregivers/patients) had a great open

discussion with members of the SDS/MSA National Board about what the

National group is doing; long range plans; and where patients/caregivers

feel it should be going. I think it was a very constructive meeting which

showed great promise of improving communications and working on obtainable

goals for all of us. We now have several people who have been identified as

volunteers to work on specific tasks. Things we talked about:

***Research - setting up a method of getting and granting research grant

funding. Note that it does take great sums of money to do scientific

research and that it may be some time before we have enough funds to provide

a grant. But hopefully by this time next year, we will have established a

procedure for how to do it and a fund specifically for research.

***Handling volunteers and giving them direction. This is another area that

was discussed and a promise was made to work on communications in this area.

Hopefully we will hear soon about how this will be handled.

***Finances - The National group is currently getting a grant from Shire

Pharmaceuticals of $20k per year, but the patent runs out next year and we

will probably lose that at that time. Since that money goes to support the

conferences and the 866-SDS-4999 number, we will need money to support this

type of thing in the future. All of us know that there is a need for funds

to handle the everyday expenses of running any type of national office and

this is an area we will have to face in the coming years.

Other issues were discussed such as a better brochure to pass out to new

members with tips such as the one discussed by the list for years, a

brochure to put in doctors offices and one for doctors themselves. However

time ran out and many had to catch airplanes or start their drive home. So

this will be an ongoing discussion. It is important that we keep this

communication going, so that everyone knows what people want from their

National organization. Several members of the Board are members of the list

although they do not always respond in writing (just as many of you only

listen). Feel free to offer your suggestions on this list as to direction

you would like to see from our National group and what you can do to help.

A good way to begin, is to compile a list of all your doctors (off list).

We need to work out details in the next weeks, but we want a list of doctors

who at least have been exposed to MSA, along with their name, address, and

phone number. Then we will work on getting brochures about MSA into their

offices.

Trying to cram all my thoughts on a great weekend into one email is not an

easy task. I hope this gives you all a brief glimpse at what we did and the

magnitude of MSA. I hope that we have started to give direction to both the

list and the National group and form a strong partnership that will grow to

meet every need of brain disorder(s) patients and caregivers. We all want

one unified voice speaking for MSA patients and caregivers. All in all, I

feel it was a great success and want to thank the National group and all

involved for doing an excellent job on this conference. The audio tapes are

in the hands of a volunteer for editing. Someone else will have to give you

details as that is completed.

Take care, Bill Werre

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

b. Boston Meeting -- Part 1 -- Parkinson's vs MSA by Carol Langer

carol.langer@...

Hi gang,

Sorry it has taken so long for me to sit down and write this up, but

I see that Bill has already done an admirable job of summarizing what

was for all of us a wonderful meeting. I'll try not to repeat what

he has already said, but to add to it. I did take detailed notes and

this will be in several parts so I don't make any post too long.

Roy Freeman provided a short introduction where he called MSA " One of

nature's cruelest experiments. " That particular sentence really hit

me and continues to resonate.

Dan Tarsy talked about the various forms of " atypical Parkinson's " and

indicated that about 20% of people with Parkinsonism have MSA. He

also said that most patients began to exhibit symptoms in their early

50's. He noted several red flags that can indicate MSA, rather than

Parkinson's:

- Early prominent autonomic signs

- Cold dusky hands

- Inspiratory stridor (Loud sounds when inhaling, especially in sleep)

- REM behavior disorder (acting out dreams)

- Peripheral neuropathy

- Dystonia (particularly head flex)

- Gait and balance problems (specifically said that if the patient

is in a wheelchair within 5 years of onset of symptoms it is probably

MSA.)

- Speech and swallowing problems.

I'll write more in the next installment....

Carol & Rob

Lexington, MA

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

c. Boston Meeting -- Part 2 -- Cognitive Function by Carol Langer

carol.langer@...

I took especially good notes in this part of the meeting because it's

a problem that affects Rob and because Dr. Dan Press did such a good

job of explaining the issues. Here goes:

Cognitive issues:

- Occur only in some patients

- Only in " frontal lobe " tasks

- Does not correlate with the duration of the illness

- NOT dementia

Most types of cognition are spared in MSA. These functions usually

remain intact:

- Short term memory

- Long term memory

- Overall intelligence

- Language function (different from speech)

Frontal Lobe functions can be impaired:

- The frontal lobe contains the " working memory " , or the ability to

maintain information on-line.

- This includes the executive function, which is the ability to

order and manipulate tasks for maximum efficiency.

Working Memory

- Served by a frontal-subcortical network of regions of the brain.

- DOPAMINE CRITICAL FOR WORKING MEMORY FUNCTION (emphasis is mine!)

Possible contributors to working memory deficits:

- Normal aging (having a senior moment!)

- Depression

- Sleep problems

Additional causes in MSA

- Related to MSA pathology

- Subcortical deficit due to basal ganglia dysfunction

- Other medications

Treatment for working memory deficit

- Behavioral

- Pharmacological

Behavioral

- Avoid multi-tasking

- Break up tasks into parts, write them out, use as a checklist

- Use organizers (electronic or paper)

- Avoid sleep depravation

Pharmacological

- Stimulants

- Ritalin

- Adderal

- Antidepressants

- Not SSRI's

- Wellbutrin or Effexor

- Provigil (modafinil)

On to part 3....

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

d. Boston Meeting -- Part 3 -- Various Questions and Answers by Carol Langer

carol.langer@...

These are various questions and answers that came up along the way that I

thought might be helpful:

Is the " brain pacemaker " recently available for Parkinson's patients

helpful to MSA patients?

No, because the areas of the brain affected in MSA are so diffuse.

Dr. Tarsy noted that his team had implanted one of these devices in a

patient they thought had Parkinson's and it had not worked well.

Upon further testing, it turned out the patient has MSA, not

Parkinson's.

Is pain part of MSA?

There was some disagreement on this, but Dr. Freeman stated that pain

can be part of MSA and is usually caused by dystonia or peripheral

neuropathy

Are nutritional supplements helpful in delaying or treating MSA?

This was broken down by type:

Vitamin E -- no help

CoenzymeQ10 -- Not sure. There is currently a study underway in

Parkinson's patients.

Glutathione -- There is evidence that processing of glutathione does

not work properly in Parkinson's patients. However, glutathione

given orally or by injection does not cross the blood/brain barrier,

so " you could inject a gallon of it and it would have no effect. "

I'm sure I missed a lot of what was said, but I hope some of my notes

are helpful to others. I wish you all could have been there!

Hugs,

Carol & Rob

Lexington, MA

Sign In

Multiple System Atrophy News - May 2002

Recommended Posts

Guest guest

Link to comment

Share on other sites

Join the conversation

Activity