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>Date:    Sun, 1 Sep 1996 21:09:06 -0400
>From:    Naomi Meyer <[log in to unmask]>
>Subject: I Just Subscribed.  Hi!
>
>My husband has had Parkinson's for 24 years.  Never a sign of tremor, but
>lots of dyskinesia and currently freezing a lot, loss of cognitive ability
>and bad hallucinations.  Also, he dozes a lot.  Incontinence, too.
>He really did quite well for the first 20 years, and disease progressed at a
>very slow rate.  He was able to work for the first 12 years, then was forced
>to retire since he was a dentist and his motor functions were too badly
>impaired.
>That's my story.
>His neurologist has recently suggested Clozaril for the hallucinations, which
>does not thrill me.
>Hope I haven't said too much in my first message!   All comments, prayers and
>support appreciated!
>[log in to unmask] (Naomi Meyer)

Hi Naomi,

Welcome.
The hallucinations, cognitive impairment and dozing MAY be related to the
long-term effects of the medications used to control PD.   Artane (if your
husband is taking it) is a prime suspect, but Sinemet in large amounts can
also cause problems as can Bromocryptin (Parlodel)

Margaret has now been taking 100 -112.5 mg of Clozaril daily for just over a
year without any major problems but still has a monthly blood test just in
case her bone marrow begins to be affected.    Clozaril needs to be taken
with caution,  especially amongst elderly people.  It should be administered
starting with a minimal dose and built up VERY slowly to a therapeutically
significant level.  In our experience this was 75-100 mg daily and it took
about 3 months to get Margaret up to this level.   Even before this was
reached,  we began to see an improvement in the dyskinesias but there had
been a still more significant improvement in Margaret's mental condition.

Her hallucinations have ceased,  and she is now very much on the ball
(sometimes too much so for my comfort!).
She still gets dyskinesia, but is now able to tolerate more Sinemet than
previously, and her mobility has consequently improved.    She has found
that this amount of Clozaril is as much as she can take.
One of the side-effects of Clozaril is (you might have guessed it)
drowsiness; and she can only tolerate this much of the drug by having it all
at bedtime.  This way she finds that the worst effects have worn off by
morning but she is still very hard to get going even then.   Another
side-effect is lowered blood pressure, but Parkies seldom arise to their
feet quickly enough to  bring on blackouts and their balance is so bad that
the odd extra dizzy spell between friends is hardly noticed.

All in all, we feel that Clozaril has given Margaret a reprieve.   Mainly
because of her mental condition, I had reached the point where I was unable
to continue looking after her and was considering placing her in a nursing
home.   Now we  have only her physical disability to contend with.
Incidentally,  we have found that the initial discomfort and inconvenience
of having a supra-pubic catheter is far outweighed by the advantages of not
having to cope with the problems of incontinence

Hope this all helps you both to cope with what is surely one of the less
pleasant of life's afflictions.
Mark.      (Margaret  64,  PD 27 yrs)

-----------
Mark  Atyeo
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+61 6 286 2606