Hi Helen,
First let me explain that I am the care giver, my wife is the
Parkie. I am 72 and she is 71. She has had Parkinsons for over 20
years and until last year we were able to control this nasty disease
with meds. Sinemet, Comtan, and Permax along with much trial and error
with other Parkinson medication. As you know, no two Parkies react the
same so trial and error becomes a way of life. Fortunately we have had
Neuros who allowed and even encouraged us to experiment with different
meds. For the past year the on and offs have become erratic with
longer and longer off time. She has been taking this medication 5 or
more times per day. Her main problems are tremor and freezing when
she is off. Now days, sometimes the medication gives no relief even if
doubled. When she feels cold, I know that she is going into off mode.
We were very fortunate to discover the medical team at St. Johns
Hospital in Oxnard California and she is now scheduled for DBS next
week. We have high hopes for this operation as we have witnessed the
results. She was evaluated as a prime candidate for DBS.
Unfortunately, not all are able to qualify as there are many flavors of
Parkinsons.
I hope that this is useful to you and anyone else reading this
note. I posted to the list so more people can read about our experience
and perhaps gain from it. I offer this only as a statement of our
experience [we have a lot of that] and am not trying to give medical
advice. For the past several years I have surfed the net for any and
all information on Parkinsons and DBS. There is a great deal of
excellent information out there for anyone who is interested.
Prayer is also a big help, so believe it.
Ron Heimback
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