>Dear Don Summers:
I read your message on the Parkinson network about your wife's
Shy-Drager Syndrome (SDS). I cannot offer you much help but mostly
commiseration. I developed al the classic signs of the disease about 5 years
ago, simultaneously with slowly developing Pakinsonism. Today I am 99% free
of the Shy-Drager, rarely take medications for it. The Parkinson took up the
slack; my physical activities are limited, and I have retired (I am now 67,).
I was fortunate to have as a colleague at Vanderbilt University
Medical School, David Robertson, M.D., who is among the top of world experts
on SDS. He hospitalized me for 3 weeks during which I was tested for the
effectivenes of various drugs primarily to maintain blood pressure, heart
rate, adrenal function, salt balance, and Sinemet/Permax for the PD.Drugs to
maintain autonomic nervous system function that I take are: fluodrocortisone
and yohimbine. I was also successfully treated with codeine, a mild narcotic
analgesic to supress the chronic, severe, back pain, that I have had for 40
years. I emphasize the latter, because without the codeine the depression
and somatic problems would have driven me to suicide.
This the way things are now. I haven't written you anything that
may lead to a remission of the SD. I sometimes still am taken over by terror
about the ultimate return of the horible symptomes I had. Whar caused the
remission? Dr. Robertson would like to know what would be the consequences of
withdrawal of any of the drugs that I take to prevent the recurrence of SD,
but the risk is unaceptable. However, have you considered or obtained
re-examination of your cardiac, endocrine, etc. status. I reccomend
Dr.Robertson enthusiastically, but I have not spoken to him about you. That
is your privilege and initiative. I don't reccomend your reading up what is
in the recent medical literature. It can be horrible. But, courage is vital.
I hope you will experience some remission of your anxiety; I know
what that can mean. It isessential for any initial steps of remission. Maybe
you wil experience the apparent miracle that saved my life and returned me
to a reasonable existence. Contact me if you can use my further help.
My best wishes, but you wil have to work hard at making them come true.
Steven E. Mayer, Ph.D.
