None of the PD medications seem to offer my husband any help. Instead they only
give side effects so he is not on anything right now and has been off the last
drug (sinemet) for about a month now. He was on 25/100 sinemet 3 times a day for
awhile. At this level he did not seem to have any side effects. We didn't know
if it was doing him any good as he couldn't remember how he had been before.
Other drugs didn't do anything positive so the neurologist (movement disorder
specialist) suggested increasing the dose. We got up to 6 pills a day. There was
no improvement in the PD symptoms. But my husband was so stoned I had to shake
him awake in order to give him the next dose. This was an all day all night
condition. He was NEVER awake except to eat and he fell asleep eating. He had
'foggy' feelings in his head and something he called a veil like feeling over
his head and eyes. I called the neuro and together we decided there was no point
in giving him a medication that had only bad things to offer.
At present he is more alert and his mind is now clear. His head feels fine
and he doesn't faze out on me like he did before. His PD symptoms are pretty
much the same except for the freezing up is a bit more frequent but maybe just
once a day more frequent.
I don't know the answer. I just know the two best drugs out there did nothing
for my husband except negatively.
I really appreciate your interest.
Norma
Ivan M Suzman wrote:
> Dear Norma,
>
> I am offering a suggestion for your husband
> and you. Your description of his inability to gain
> but limited movement suggests either insufficient
> medication, or blocked medication. Blocked
> medication may perhaps be related
> to his meal schedule or his diet, either of which
> can derail a good medication plan.
>
> I faced this "freezing episode:" problem more
> than occasionally during this past long winter.
> I discovered that I had to regulate my L-dopa (the
> drug in Sinemet and Sinemet CR ) intake around
> the clock, day and night atttentively. This round-the-clock L-dopa
> intake,enhanced by a Parkinson's - friendly diet and
> aerobic exercise (long walks 4 times per week), has got me to
> a state of noticeably more constant mental and physical functioning,
> considering especially that I am in my 16th year since symptoms
> appeared, and my 13th year of taking medications.
>
> I hope you will let us know your husband's dose
> schedule ..... Also, is he eating on a meal plan and meal schedule that
> is
> Parkinson's-friendly?
>
> Hoping that we can be helpful,
>
> Ivan Suzman
> Portland, Maine
> 51-39-36
>
> On Wed, 8 Aug 2001 13:24:10 -0400 Norma Dikeman <[log in to unmask]>
> writes:
> > I hate to be a pessimist but my husband has not found any real help
> > from any
> > medications and most have given him side effects worse than his PD.
> > Though he can
> > not move except with a walker, has very limited use of his arms and
> > hands, can not
> > get up out of a chair unless it is a lift chair or someone helps
> > him, can't bathe
> > himself etc etc, the medications made him so stoned he appeared to
> > be mentally
> > impaired plus he was having strange feelings in his head and would
> > faze out
> > entirely. We went to neurologists and movement disorder specialists.
> > The results
> > are that he gets limited help from sinemet but not enough to make it
> > worth
> > suffering the side effects.
> > The one neurologist would like more tests taken but only to come up
> > with a true
> > diagnosis. He does not expect it to help as far as medications so we
> > are not doing
> > the test. Right now we are on a schedule of vitamins provided by Rob
> > Schaaf. We'll
> > see how they work.
> > Norma CG for Gordie (66/65/58)
> > (hope I got this right this time. 66 years old/diagnosed at 65/
> > suspected he had
> > it since age 58)
> >
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