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Hi, Joan! Reading your story, I am so upset at your husband's doctor! There is absolutely NO reason why you and your husband should be suffering through a series of chorea-like symptoms, and sweating and shaking. However, several of us have been there, because we did not know what do to. Like you, we had to build up the courage to ask for help. It sure looks like you have been given TERRIBLE advice! I will try to do my best to help you and your husband. I'm sure other Listmembers will help, too. I get SO upset when doctors tell patients little more than how many times a day to take a medicine!! How irresponsible! Sometimes I wish we patients would get paid, when we give the correct advice, but alas.......that's not how things are designed.. Here are my suggestions, Joan, about using Sinemet I am not a doctor, nor a chemist, but my best advice, nonetheless, about your husband's Sinemet pills, is to throw out-- yes --THROW OUT the current medication schedule!! See if the following helps: 1. PARKINSON'S IS NOT a 9am to 5pm DISEASE! Parkijnson's is a DOPAMINE DEFICIENCY DISEASE. SInemet is designed to break down, once it reaches the brain, to provide dopamine. Your husband takes Sinemet at 8,10,12, and 2. Why not continue at least, all the way till his bedtime? He's only being medicated for 1/3 of each 24 hour day!! Is your husband supposed to function without Sinemet for 16 of each 24 hours (from 4:30 PM till 8:30 the next AM) ? And why wait till 8 AM to start off ?? 2 HOW MUCH TIME SHOULD ELAPSE BETWEEN DOSES? The half-life for the Sinemet 25/100 is approximately 90 minutes. After peak impact, its effectiveness begins a rapid decline, because the medication is getting all used up. It is all used up--its life is over, no more than 180 minutes after swallowing it. Theoretically, your husband's 4 Sinemet doses peak before or by 9:30am,11:30am , 1:30pm and 3:30pm. After 430 in the afternoon , there is no more dopamine (which is what he is needing) to be derived from his Sinemet pills. No wonder he is in such a MESS in the evening! So, your husband has NO help with his dopamine deficiency from perhaps 4:30 Pm to the following morning at 8:30 or so (when I would guess the 8:00 dose begins to kick in)! 3. DIET IS A MAJOR CONSIDERATION! Any competent neurologist should KNOW that PROTEINS can interfere with the absorption of Sinemet. Sinemet is more effective if taken BEFORE eating, and carbohydrates are HELPFUL. Your husband will benefit more from Sinemet, if his pills PRECEDE any meals by a half-hour to 45 minutes. The pills need to get into the small intestine AHEAD of his food. ALSO, he may benefit from a higher carbohydrate, lower protein diet. This requires some thoughtful planning, even when it comes to snacks. It may have a MAJOR effect on what he eats-if he now eats meats, fish, eggs, and fowl, he may possibly have to reduce these tremendously. Switching his diet is NOT a simple matter. Most of us don't want to give up that big, juicy steak, or that mouth-watering lobster dinner!! But if he eats too much protein, he will NOT gain as much from Sinemet, because it will NOT cross the blood-brain barrier. Kathrynne Holden, MS, RD, is on our List, and will respond with wisdom to your questions in this area. 4. TASMAR CAN HELP.. This pill is designed as an inhibitor of an enzyme in the digestive tract and in the brain, called COMT, or catechol-o-methyl transferase. COMT, unstopped, prevents the L-DOPA in SInemet from reaching the brain, and also prevents this pill-borne L-DOPA's conversion, once inside the brain, to dopamine. Tasmar helps me tremendously. I have been taking it for about one year now. My neurologist and I have discovered, as I have posted to the List, that 50 mg doses every 4 hours work extremely well, for me. My Sinemet need has dropped by 50%. I am FAR more energetic and productive. My "on-time"has gone up, from 9 or 10 hours per day WAY UP, to 15 hours per day. RECOMMENDATIONS: I would TOSS OUT his current Sinemet schedule. It is NOT working! 1.Instead, try to start his use of Sinemet earlier in the morning, shortly after he wakes up. It may work better if he uses apple or orange juice to dissolve it. Or a LARGE amount of water. 2.Try every 3 hours (not 2) between Sinemet doses. This is much more in keeping with its usual half-life and effectiveness. 3. Continue using Sinemet ALL the way til bedtime...and consider ONE dose during the night. Bob Armentout from the list is one very current example of a patient who has written us that his prolonged nighttime agony is finally over. This is because he takes SInemet in the evening and at night now. He just started his new routine ten days ago. Did you follow his story on the List? Joan, I sincerely hope this helps! Write again soon! Ivan Suzman :-) 49/39/36 Portland, Maine P.S. Joan'sstuff (your e-mail name) sure looks like important stuff for all of us PWP's and caregivers -maybe you noticed my e-mail name?? I.S. :-) On Thu, 18 Feb 1999 18:38:43 EST Joan Etheridge <[log in to unmask]> writes: >Thanks for the imput so far on the above. I'll give more detail as >requested. >My husband has had pd for 12 or 13 years. Goetz at Pres St. Lukes >confirmed >it, but said it would probably only be left sided...Husband was >working at the >time so did not continue there as traffic stressed him out coming home >that >late in the day after work. He found a neurologist that knew nothing >about pd >& let him do as he thought he should. When he retired at age 64, we >found >another Doctor who was seeing along with his team (400 pd patients) >--4 >doctors. This doctor was into new meds & programs that he was >documenting. >Well & good, but husband did not want to go along with this. We say >another >Dr. new in the business which did not work out...the doctor we are >with now is >a neurologist...nice, but after working with my husband says none of >his >patients exhibit his symptoms & so cannot help. He suggest >a doctor specializing in pd. Husband is on mirapex, 5 tablets of .025 >daily, >2 at 7, 2 at 12:00 noon & 1 at 6 p.m. Sinimet 25/100's 4 daily, one >at 8, 10, >12 & 2. We've tried the time ones, do not work. We've increased >mirapex & >hallucinations occur. >Has tried the new drug, taszmar, did not work--more correa & shaking. > I've >video's his tremors & shown the doctors & they have not seen anything >like it. >I'm trying to locate another doctor--maybe it will be a consultation >at Pres >St. Lukes with Dr. Goetz or another somewhere. Some of the problem >lies with >working with my husband. He is afraid everyone is trying to get him >to have >surgery...also has many other fears...am not sure drug induced, but >they come >& go. Lately his 10:00 time has been a series of severe shaking, but >today >again he was fine until this evening. The shake downs leave him >exhausted, >totally wet from perspiring, his eyes close so he can't see & his has >to pry >his lids open. Last anywhere from ahalf hour to mostly an hour >sometimes >longer. >Maybe this will be more informative for those of you who asked. >Thanks. Joan > ^^^^^^ WARM GREETINGS FROM ^^^^^^^^^^^^ :-) Ivan Suzman 49/39/36 [log in to unmask] :-) Portland, Maine land of lighthouses 26 deg. F :-) ********************************************************************