Shy-Drager/MSA Support Group


 

 

   Multiple System Atrophy News

 

Click figure to go to SDS/MSA Website


May 2002
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Table of Contents (TOC)

  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

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1. ARTICLE: Multiple System Atrophy
Autonomic Disorder Appears in Many Guises
By Francie Scott

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

This article contains interviews with Don Summers, President of the Shy-Drager/MSA Support Group and Dr. David Robertson, neurologist at the Vanderbilt Autonomic Dysfunction Center.

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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/

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Video 1: http://videocast.nih.gov/ram/nss032502.ram
Chaperone Suppression of Neurodegeneration in Drosophila (Fruit Flies)
Presented: Monday, March 25, 2002
Author/Sponsor: Nancy 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

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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

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3. ARTICLE: Parkinson-like Disorders
(Thanks to Perry Sennewald for pointing out this article)
Parkinson-like Disorders
by Abe Lieberman MD
http://www.parkinson.org/pdquestions.htm

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4. SPECIAL REPORTS from the 2002 Shy-Drager/MSA Annual Conference
Held in Boston May 3 - 5, 2002
Table of Contents

  1. >> Impressions of the Boston Conference by Bill Werre
  2. >> Boston Meeting -- Part 1 -- Parkinson's vs MSA by Carol Langer
  3. >> Boston Meeting -- Part 2 -- Cognitive Function by Carol Langer
  4. >> Boston Meeting -- Part 3 -- Various Questions and Answers by Carol Langer

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

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. :o) 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 John 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. :o) I know John, 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 :o) even one on handling crappy details :o) 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. :o) 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

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b. Boston Meeting -- Part 1 -- Parkinson's vs MSA by Carol Langer carol.langer@verizon.net

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

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c. Boston Meeting -- Part 2 -- Cognitive Function by Carol Langer carol.langer@verizon.net

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....

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d. Boston Meeting -- Part 3 -- Various Questions and Answers by Carol Langer carol.langer@verizon.net

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

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