Boston Meeting -- Part 1 - Parkinsons vs MSA

[Guest guest]

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 particuliar sentence realy hit

me and continues to resonate.

Dan Tarsy talked about the various forms of " atypical Parkinsons " 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

Parkinsons:

- Early prominent autonomic signs

- Cold dusky hands

- Inspritory 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