Who are the members of this group?

Posted August 12, 2002 · August 12, 2002

Hello group.

The low response rate to the poll about the possible name change makes

me wonder how many members (of the 700) are active, and how many (like

me) lurk in the background and seldom if ever post. What can the

moderators detect, and what can they tell the list about this?

And of course I love the list, and read it almost every day.

Posted August 12, 2002 · August 12, 2002

Hi mmenar,

There is not a lot that the moderators know. Actually, the only moderators are

Pam who has a limited abilities as a moderator and a Professor at Vanderbilt who

set up the list.

The last I saw of the poll it was approaching 40 out of almost 700. The rules

and access for the poll are set by Yahoo Groups and not the list itself.

99% of the list (at least) is either a patient of a brain disorder; a family

member or caregiver; or an interested friend or former caregiver. We do NOT

care what your brain disorder is called and we have people on this list already

with MSA/SDS, PAF, POTS, CBGD, LBD, PD and others that I know of. No one is

opposed to them staying on the list. If we tie the list name down too much,

some people may feel excluded and I am not in favor of that. On the other hand

Pam and I have made every attempt to get links to the list updated by sending

emails (which included a link to the website and the words multiple systems

atrophy) to every search engine and health site including NIH.

We currtently have about one hundred people who write at least at times out of

about 700 list members, so there are a lot who never write. We do not know if

that is because they can not type due to the disorder, or just don't feel they

have anything to contribute. We are not really worried about why they do not

write as long as they are getting something out of the list. Pam and I do get

personal eamils at times saying that a list member we never knew has died and

that our notes helped the patient and/or caregiver at some point. I am sure

some of you get that type of note also.

That is the whole purpose of the list - to help each other. In the earlier days

of the list when there were only a hundred or so on the whole list, people did

not worry as much about labels. They did have concerns about getting some sort

of diagnoses and we all went through some apprehensive times getting a

diagnoses. We have seen people diagnosed as MSA who have died in a few years

and some that lived over 20 years, but the ones who live over 15 years usually

end up with a diagnoses of something other than MSA/SDS if they have an autopsy

after death. Even though they were diagnosed as MSA/SDS to the day they died.

There are no absolutes with these alphabet soup brain disorders. Do your

exercises as much as possible and try not to worry about what it is called.

Most of the info on this list applies in any caregiving situation as long as you

use the info for a specific symptom. If someone recommends a medicine which can

hurt certain people on the list, some of us will usually put out a warning that

it can hurt some or many of the people on the list.

Always trust your doctor above the info on the list. If a bunch of us disagree

with the doctor about treatment of a symptom, question the doctor as to why they

are treating it that way. The doctor should be able to tell you their reason

for using a different medicine and why they are doing it. We have the most

problems with ER doctors who tend to be trained in trauma more so than rare

brain disorders and autonomic failure. It pays to take some info on autonomic

failure with you to the ER for that reason.

Our poll is not the most scientific, but tells me people want to see MSA added

to the name. The National Support Group has already added it, but we are not

sure what that would do to our achives on the list and other administrative

tasks with links.

Hope this helps you with some background.

Take care, Bill Werre (member since March 1999)

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