For Dolores Buente:
Hi Dee:
I wrote earlier about my experiences while taking Requip. I mentioned the
sleep attacks (I once fell asleep at the wheel while waiting for a traffic
light....woke up wondering where I was....before the light turned green,
fortunately), the swelling of ankles and legs, foot and leg cramps, nausea,
and the dry, sticky mouth that is still with me, .... I failed to mention
that I had begun seeing flashes of light in the dark of my bedroom and what
I believe was the beginning of hallucinations.......I would be watching TV
or sitting at my computer and I would suddenly sense someone standing at my
right shoulder. and at times think I saw movement along the floor near the
baseboards, like a mouse darting. It wasn't mice, and there were no real
flashes of light, and no one else was in the house. At the time I was up to
16mg/day of Requip. If I had known when I was dx'd what I know now I would
have never taken Requip. There is still a controversy among neurologists as
to whether dopamine agonists like Requip and Mirapex actually slow PD
progression, and if you will read the studies that "prove" that they do you
will find that the percentage of the test groups who are rated as being
helped is really not much over 50 or 60 % and who knows for sure about the
long term benefit since these drugs have been around such a short time. It
reads like voodoo science. With the real symptoms of PD...tremor, stiff
muscles (straining to put on socks or tie shoe laces), poor balance, and
sleep difficulty...as differentiated from the drug side effects that l
experienced, being so varied among PD patients it is difficult or
impossible to determine true benefits of taking the agonists. They
undoubtedly help certain symptoms in one individual and provide no relief
in another case. I do believe this right now.........The true PD symptoms I
have are alleviated periodically by carbidopa/levadopa and I would never
suffer side effects like I did in order to PERHAPS (remember there is
controversy over this also...Drs are not Gods) stave off the inevitable
long term debilitating effects of Parkinson's Disease. PD is a "designer
disease" and some will have it progress faster or slower no matter what you
do.... so..... does Sinemet actually hasten the "end game" of PD? Probably
it does because the studies have been in progress so long and show it. But
for each horror story we see reported on PIEN it seems there is one by
someone who has had PD for 20 or 30 years. I would rather have my Sinemet
now and gamble on DBS later IF it is called for. To me it seems the stem
cell transplants are many years away if they start cloning now and if they
ever do prove effective.
That is how I will consider my own situation as long as there are so many
areas of disagreement among neurologists. You have to take into account
that I had a late onset and will have been round 69 years this November 13.
If I were 20, or even 15 years younger I might look at it differently .
Regards from Don A
left-sided shaky intellectually diverse pun-loving
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(a sinistral anaseismic, eclectic, seldom perky, paronomasial
Parkie) and with a sometimes perverse sense of humor LOL
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