Letters to The American Autonomic Society

[Guest guest]

Dr. Felicia Axelrod

President, American

Autonomic Society

I would like to thank the members of the

American Autonomic Society for the help they have given MSA patients over

the years. We have learned much in the past seven years sincre I learned

of MSA and I hope to hear of a cure in the future.

My wife was diagnosed as PD in 1990 and by 1993 we knew that she was progressing

too fast for that. Dr. Pincus at town Univ. Hospital first suggested

OPCA in 1993 and NIH told us probable MSA in 1995. There was little information

at that time in literature or on the internet about this terrible disorder.

That is one of the worst things about MSA for both caregivers and patients,

the feeling that you are fighting it alone. We found help in 1999 through

the SDS (we did not know MSA was also SDS) email list supported at that time

by Vanderbilt. We do know that it helped us both through information sharing

and knowing we were not alone. I encourage you to direct your brain disorder

patients toward that list and the associated local support groups.

shydrager

I currently run a support group in the Washington, DC Metro area which draws

people from about 120 miles away and we have about 35 people on our list

(both email and telephone lists). We have members with various brain disorders

such as MSA, PAF, POTS, CBGD and some not yet diagnosed, but all share caregiving

tips. It DOES help.

My wife did not make it until a cure was found, she died last November, but

I hope to be alive to hear you found a cure. In the meantime, keep up the

good work.

Take care, W. (Bill) Werre

[Guest guest]

Dr. Felicia Axelrod

President, American

Autonomic Society

I would like to thank the members of the

American Autonomic Society for the help they have given MSA patients over

the years. We have learned much in the past seven years sincre I learned

of MSA and I hope to hear of a cure in the future.

My wife was diagnosed as PD in 1990 and by 1993 we knew that she was progressing

too fast for that. Dr. Pincus at town Univ. Hospital first suggested

OPCA in 1993 and NIH told us probable MSA in 1995. There was little information

at that time in literature or on the internet about this terrible disorder.

That is one of the worst things about MSA for both caregivers and patients,

the feeling that you are fighting it alone. We found help in 1999 through

the SDS (we did not know MSA was also SDS) email list supported at that time

by Vanderbilt. We do know that it helped us both through information sharing

and knowing we were not alone. I encourage you to direct your brain disorder

patients toward that list and the associated local support groups.

shydrager

I currently run a support group in the Washington, DC Metro area which draws

people from about 120 miles away and we have about 35 people on our list

(both email and telephone lists). We have members with various brain disorders

such as MSA, PAF, POTS, CBGD and some not yet diagnosed, but all share caregiving

tips. It DOES help.

My wife did not make it until a cure was found, she died last November, but

I hope to be alive to hear you found a cure. In the meantime, keep up the

good work.

Take care, W. (Bill) Werre