Typo error on first try. Sorry. --------------------- Forwarded message: Subj: To: Ilan Feuchtwang Date: 95-07-06 20:27:53 EDT From: JRKramar To: [log in to unmask] From Jan Kramar <JrKramarxaol.com My sympathy to you, your father, and especially your mother. One consolation that helps me get through hard times is the knowledge that I am not alone. We Caregivers lean on each other. My husband is 69, a retired missionary, grew up in a rural irrigated area drinking canal water, also used some strong anti-diarrhea and anti-athlete's foot meds rather liberally. Had at least one long exposure to household pesticide. High stress in driving in Lima, Peru, traffic, narrow mountain roads with narrow escapes, and extreme trauma in having to commit a mentally ill (violent) friend to prison. We have had some rough times with frequent urination. In the past as many as 10 times in one night. We tried condom catheter, which works for one man in our support group, but not for us. Poor memory and the ability to get himself up at times led to dragging the bag across the floor on the way to the bathroom. :-( Then we went to a urologist who prescribed oxybutynin for a trial. After one week Glenn had foul breath which he had never had before, and the med had not helped anyway, so we stopped that. The past four months we have kept a strict schedule. I should mention that our major discomfort is end-of-dose dyskinesia, so what works for us may not work at all for you. By giving 1 Sinemet CR 50/200 and 1/2 Sinemet Regular 25/100 5x/day, at 6 AM, 1045, 1530, 2015, and 0100, Glenn usually sleeps from 9 or 9:30 until 1 AM and from 1 AM until 5:15. I vary the 1 AM dose according to the time he wakes up, from 12:15 till 1:30. I keep the daytime doses fairly regular by giving the 1/2 regular Sinemet earlier than the CR if he shows signs of restlessness. It seems to me that the restlessness that comes to him from being low on dopamine is part of what makes him need to urinate more frequently. I also keep the mealtimes regular, at about 7:30, 12:00, and 5:30 and serve low protein meals (mostly vegetable protein) spread as evenly as possible throughout the day. Food really interferes with his absorption of the dopamine. He used bromocryptine and eldepryl for two years. We had to stop them in 1993 because of the hallucinations. We have not tried clozapine because we already have trouble enough with low blood pressure. Our neurologist sent us to a psychiatrist who prescribed mellaril (generic name thioridazine), but he cannot take much (1/4 to 1/2 25 mg. tablet, usually at bedtime.) We still have plenty of problems, the most disconcerting being the hallucinations and dementia, but at least we get two fairly good stretches of sleep at night and a good PM nap. From reading the PARKINSN list, I have an idea that our medication dosage is on the high side. I wish I could cut it down. But the other night he had leg-jerking and extreme restlessness (he calls it "heebie jeebies") from 8:30 until 1 AM even though I finally gave him what I thought was extra 1/2 regular at 10 PM. It was as if he had not taken his 8:15 dose. He had not. We found it the next morning at the bottom of his water glass on the dining-room table! None of this may help you at all. But at least you know we are listening. I hope for better days ahead. Jan