>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 [log in to unmask] +61 6 286 2606