>We met with Dr. Sutton at his office at Kaiser in Hollywood. I liked him,
>but the words he had re. my mother's condition were not heartening. First
>of all the pallidotomy was downplayed; not only is Kaiser not approving
>them at this time but he seemed hesitant whether she is a candidate. I am
>not certain which was more true.
>He did act as a consultant for her regular neuro. He summarized the
>situation as this: she has a combination of symptoms, with 3 main ones,
>some of which alone are not all that common and all of which together are
>not only somewhat rare, but make for a very complicated and difficult
>situation. She had extreme rigidity/bradykinesia, dystonia and akathenisia
>(sp?)...
>She is taking far more sinemet than he has seen, and yet he appreciates the
>difficulty in backing off.
>At this point I hope that his recommendations will lead to the trial of
>some medications used for dystonia first of all.
>In the last week by cutting back on the Sinemet CR and using the 25/100's
>more, she seems to have less dystonia and more bradykinesia.
>The akathenisia, a sensory condition with symptoms like not being able to
>stand having anything, including clothing touching her skin, hot and cold
>sensations, is something I wonder if anyone else has had any experience,
>ideas with.
>
>I read some of the survey notes and must add only that there is an
>intensive need for her to move during those times when she has little to no
>control over her body.
>Also, after she eats especially, she has been having fainting dizzy spells.
>This happens extremely quickly and has had some nasty falls.
>
>[log in to unmask]
Deborah - In re your note of 5/8: My wife, 76/10+. has rather severe
bradykinesia, as well as dyskinesia. The latter seems especially related to
her dose of Sinemet, and we have to steer a very narrow course between too
little Sinemet, resulting in severe akinesia, a peculiar pain in the
throat/face/jaw, and non-specific malise, and too much Sinemet, which is
related in an inconsistent way to dyskinesia. She takes about 1250 mgm. of
levopopa/day at 1.5-2 hr intervals, which means that she gets more than 300
mgm. of carbidopa.
Some time ago Alan Bonander suggested she was having carbidopa
toxicity. Iwas most interested in this possibility, and partially switched
to Sinemet 10/100 tablets, reducing the carbidopa intake to about 100-125
mgm./d. Unfortunately, this made no difference for her. The
medical/pharmacological literature re the side effects of carbidopa is very
sparse.
I noted that your mother has hot and cold sensations. My wife,too,
has involvement of her heat-regulating apparatus. At times, she is "burning
up," and this will be followed a few minutes later by being cold.
The fainting following meals is most likely due to postural
hypotension, a fall in blood pressure upon assuming the erect posture. It
is not uncommon in us older folk, in general, but both PD and Sinemet can
make it worse. Increasing salt intake may help. A medication called
Florinef causes retention of salt and is sometimes used in such situations.
A variant of PD, thje Shy-Drager Syndrome, is characterized by severe
postural hypotension.
I wish I had more suggestions re helping these various problems.
They seem to defy treatment. Perhaps there is comfort in knowing you're not
alone.
Good luck -- Bob Howard
Bob Howard, occasionally knowm formally as:
Robert B. Howard
1320 Wisconsin St., Apt. 411
Hudson, WI 5401
CG for Lorraine 76/10+
e-mail <[log in to unmask]> New address as of 5/3/96
Voice phone: (715) 386-3596
FAX: (715) 386-8589 Manual reception, requires phone
call.
