Multiple System Atrophy News - May 2002

[Guest guest]

Multiple System Atrophy News - May 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. Bonini's research:

http://www.hhmi.org/news/bonini.html

http://www.hhmi.org/research/investigators/bonini.html

----

Video 2: http://videocast.nih.gov/ram/nss051302a.ram

Neurodegenerative Diseases: What Has Alpha Synuclein Got To Do With

It?

Presented: Monday, May 13, 2002

Author/Sponsor: Virginia Lee, Ph.D., University of Pennsylvania Total

Running Time: 01:14:40

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