Friends-- some of you asked for a report of Peter's neuro visit today
and what happened about getting Mirapex. I think others MAY run into a
similar problem, so will explain what happened. Our neuro has had no word
yet re: Mirapex--no salesman, etc. He was willing to consider it for Peter,
but needed the package insert in order to know how to prescribe it. At his
request, I checked with our local pharmacist, who gave me this number
for Upjohn in Kalamazoo, where the doc could call for info:
1-800-253-8600.
This may be useful if you encounter a similar lag in distribution.
He will decide on dosage (it comes in 4 strengths !) and call in a trial
Rx for us locally.
We asked about the jaw/mouth/tongue problems, but got no help. He did seem
to feel it is a type of dyskinesia, though. As for the trembling and
"panic" reaction on standing up,especially when someone touches/ tries to
assist him, the neuro thought it was a version of startup hesitation. I'm
not really convinced, though....Peter has not had orthostatic hypotension
which he ruled out as a cause. In general he was genial, didn't listen
well, gave the impression that he couldn't do much except adjust the meds.
Probably true! He wants us to try Mirapex & return in a month, but was
not at all sure it was any miracle drug, as it is basically in the same
family of agonists as Permax and Parlodel, neither of which P. could tolerate.
Other "prescription" was that P. have milkshakes several times a day, to
try to regain some of the nearly 20 lbs he has lost. This doc is a "medical
neurologist and electrodiagnosis " doc--but does have a number of PWPs in
hispatient load, and is on the advisory board of the state PD group. He
will "play around" with meds, but seemslittle interested in other approaches
to symptoms. Wish we were closer to Cincinnati and the PD clinic there!
He did agree that we weren't helped by Aricept,BTW.
Can you tell I'm frustrated? It is devastating to a patient to be told
more or less that"I can't do anything much for you", and it has happened to P.
twice in a week! We are looking further into home health care, as an
alternative to the NH that P. feels is not far down the road for him. At least
I think we are trying to be realistic re: the future, for at his age there
is little chance that the new research will help Peter. Hang in there, all
you young PWPs out there--there WILL be something better for you!
Camilla Flintermann, CG for Peter, 78/7, Oxford,Ohio
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"Ask me about the CARE list for PD caregivers!"
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