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Although I have corresponded privately to individuals on the list I have not
introduced myself nor explained my interest in PD. I will correct that now.
My wife is 65 and has had PD for about 15 years. The symptoms have become most
severe in the last 4-5 years. She does not have the classic shuffling and
stooped posture. she does have slowness of movement, has had difficulty
swallowing, but suffers mainly from a burning sensation mainly in her torso
which does move to her mouth and throat. She had been over-medicated to 1500 mg
of Sinemet/day to help reduce the burning sensation, during which time she lost
about 20 pounds, apparently due to the energy expended by the dyskinesia and
insomnia. She also suffered from low blood pressure which caused fainting-like
episodes which lasted for about 1 minute. She also suffered from hallucinations
and delusions during this period. To try to control the hallucinations which her
neurologist said was sinemet-induced, she was given respiridone. it was stopped
after 3 days because it aggravated her blood pressure situation; it fluctuated
from very low to over 190. However, it did almost eliminate her hallucinations.
She is now at a level of 850 mg of sinemet, has gained back about 10 pounds, and
her blood pressure situation is becoming more normal, although the
hallucinations and delusions are becoming more severe.
My questions are:
1 - Does anyone else have experience with the burning symptom?
2 - Although I have full confidence in her neurologist, I am considering taking
her to either Mt. Sinai hospital in NYC or Columbia-Presbyterian hospital, also
in NYC for observation and evaluation.
My hope is that her medication and the effect that food has on it can be
adjusted. Also to find out what can be done about the hallucinatory side effect
of sinemet.
I also hope to find out if any of the existing surgical procedures, i. e.
Pallidotomy, fetal tissue transplant, etc., can be of benefit.
The question is, has any one had any experience with either of these hospitals
and which would be the better choice?
 
Thanks for listening. Any comments would be appreciated.
This is a second transmission (6/11/95) since the first (6/10/95) did not appear
 
Cheers,
Irv Williams
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