Friends - I joined the network 5 or 6 weeks ago and have been most interested in
what you all have had to tell me. A combination of a problem about my
understanding of the e-mail system (as a newcomer to the world of computers) and
a time of travel to the western part of the US has caused me to be inactive for
quite a while. Therefore, I would like to reintroduce myself and reestablish
contact with those of you who are such consistent and interesting providers of
information re PD.
I am a retired physician - an internist, not a neurologist - whose
wife has had PD for 10+ years. She has never had much tremor, masked facies, or
peripheral muscle rigidity. On the other hand, she has marked gait instability
with frequent falls, a very soft voice with poor enunciation at times but OK at
other times, freezing on some occasions, especially in the morning on arising,
and general malaise. Perhaps most bothersome, however, have been two other
symptoms:
1. Pain in the throat/jaw/tongue. She has had this for 3-4 years with
variation in severity. It is not supposed to be a part of PD, but it
*reponds to Sinemet.* Various specialists have been puzzled by this,
but the best explanation (to me) was from a pain specialist who
believed it was due to PD-invoked throat muscle rigidity. A muscle
relaxant, Klonopin, has given some relief, but it also produces
sleepiness, which at times is welcome.
2. Dyskinesia. She has a subsatantial amount of dyskinesia, with many
unwanted movements of her extremities, usually worse at night. Some-
times they have kept us both awake for up to 2 hrs. after retiring.
I beleive they are due to too much Sinemet, as they have been better
since we cut back on the Rx. *However*, there is a price to pay for
this because if we don't give enough Sinemet, she has severe malaise
and throat/jaw/tongue pain. Terrible tradeoffs are involved. Alan
Bolander suggested Carbidopa toxicity as the cause of this, an
intriguing notion. I could find little in the PDR or other literature
re Carbidopa toxicity. This proved not to be the case, however, with
her because reducing the daily Carbidopa intake by use of 10/100
tablets seemed to have no positive effect.
In any event, I would like to hear from any of you who have had any
comparable experiences. I shall keep tuned to the network and learn from you
all. I do intend to write a note soon about doctors and chronic disease, since I
have seen so many postings that indicate dissatisfactions with docs. Some are
valid, others are at least explicable.
Hang in there - Bob Howard
Bob Howard, occasionally known formally as:
Robert B. Howard <[log in to unmask]>
1320 Wisconsin St.
Hudson, WI 54016
Voice phone (714) 386 3596
