One of the American Parkinson Disease Association chapter newsletters arrived
this week. It reported that the APDA convention in August gave mixed news
good and not so good. Researchers are no further along in finding the cause
of PD than they were two years ago, there are no new miracle drugs available
for general use (we noticed), and the possible discovery of a genetic marker
appears to be a few years further away than predicted two years ago.
The good news is surgical treatment for PD. The people at the convention
who had a pallidotomy said the operation helped, some more than others, but
all were still taking the medicines we are used to. Not one recommended
surgery unless drugs failed.
I have my own feelings about pallidotomy - that the patients who have the
"miracles" are those with disabling tremor. In my case, many of the PD
symptoms, which disappeared after a right pallidotomy, came back after a
year, but the tremor on the left side has not. Pallidotomy is not
experimental in the USA and most medical insurance plans cover it. The cost
can be anywhere from $12,000 to $30,000 or more depending upon where it is
done.
Fetal brain tissue implant was covered briefly but there is little
clinical evidence yet to make it a good option. The procedure is
experimental and controversial so medical insurance plans will not cover the
costs which are between $35,000 and $50,000.
I was reading about a new class of drugs called COMT inhibitors coming
out in the near future. As near as I can figure they are supposed to help
stop the Sinemet crud build-up on our neurotransmitters and thereby decrease
dyskinesias. Something like gas additives to prevent spark plug fowlings
that make a car run rough, eh?
P.S. Is somebody going to report on the Parkinson Foundation of Canada
National Annual Conference held in Montreal this month? I usually go but
was tied up this month. What did Dr. Donald Calne say about research which
seems to me to be stalled. Also would like a run down on what Dr. Serge
Gauthier reported re PD treatment. Is my observation correct that many PD
specialists are not giving anticholinergics to their patients anymore,
because of the mental problems caused by those drugs? What about the
agonists? Eldepryl? Did Susan Calne, R.N. speak? She is one sharp cookie
when it comes to PD and drug treatment. All neurologists should be forced to
listen to one of her lectures before they start treating PD patients.
Barbara Yacos, R.N.
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