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>On Thu 19 Dec, Christine Anne Sutter wrote: >> >Hi Folks, >> > >> >I'm brand new to this List, and have just received the Algorithm for >> >Managing Parkinson's Disease and the Caregiver's Handbook, and have perused >> >a few days' worth of email messages. I'm a caregiver for my sweetie Mike, >> >who is 56 and has had Parkinson's for 15 years. (I'm sending this message >> >for him and at his request.) >> > >> >He's been on Sinemet since the beginning, and is now on a pill schedule of >> >Sinemet and Permax. In May, his Parkinson's doc observed that his >> >dyskinesias were getting rather severe, and suggested that the Sinemet was >> >maybe now causing more trouble than it's benefit. He recommended a gradual >> >changeover to a schedule of Permax and Amantidine. Mike is apprehensive >> >about quitting the Sinemet, since he believes that it is what enables him >> >to move, so he has not made the change. The doctor renewed his >> >recommendation in August. He doesn't say much about what Mike might >> >anticipate experiencing on the new pill schedule, apart from acknowledging >> >that he might be slower. Does anybody out there have any real-life >> >experience on Amantidine, or the combination of Permax and Amantidine? It >> >would be helpful to have more information on which Mike can make his >> >decision. >> > >> >Cheers, >> > >> >Mary >> > >> >Mary - I was diagnosed with PD a year ago - >> > >> >Currently I am taking Eldepryl and Amantadine - both twice daily - compared >> to other postings I have read - my symptoms are relatatively mild - the >> Amantadine seems to do the trick - EXCEPT when I allow my life to become >> cluttered with stress - then the hand tremors return. I have learned within >> the last few months that it does matter when you take your medicine. For me >> it is not the time of day that matters - it just must be the same time each >> time each day. But that is probably the case with most meds. >> >> Christine Anne Sutter >> >[log in to unmask] >> >Hilton Head Island, SC, USA >> >> >Hello Mary and Mike. I think Mike is absolutely correct in being very >suspicious of Amantadine. I would not consider it as a substitute for >Sinemet. The message from Christine above (and please don't take offence >Christine) is typical of the sort of answers that you may see in response >to your request for help, and the reason why you should not take the advice >is simply the fact that you have had PD for 15 years, and Christine has had >it for 1 year. The difference is enormous. I don't know if you have seen the >two charts which I published yesterday, but the explanation is there in the >charts: With 1 year of PD symptoms, almost anything will alleviate the >symptoms, because a little change is all that is needed. If you come up with >a PWP who has had PD for 15 or more years and is only taking Permax and >Amantadine, then I might listen to him, but I doubt if you will find anyone. >( I should say that I was diagnosed 17 years ago, with earliest symptoms >going back 23 years) > >I use 2 books as reference works: The older one, by Dwight C.McGoon clearly >has little time for Amantadine: A summary is :- It is really an anti-viral >agent, was discovered by accident to have a mildly beneficial effect on PWPs >and no-one knows how it works. My more modern book, an English publication >called 'Parkinson's at your Fingertips', doesn't even mention the drug. >Is the doctor who is suggesting this change a neurologist or an ordinary MD? > >I fully understand the situation in which you find yourself now; I also have >trouble steering through the narrow gap between underdosed and overdosed (i.e. >Switched off and Dyskinesias). Again, my Chart A explains why this happens. > >The best that I can offer is to suggest that you make use of my analysis >program - it is what enables me to function reasonably, and aims to analyse >your particular responses to the drugs which you take, and suggest the best >schedule to suit you. You can read all about it without any pressure, by >going to the URL given below (by kind permission of Ron Vetter, who made a >space for me on his web site). This explains what you need to do , and how >to do it. If you are interested, call me and we can 'talk' some more. > In the meanwhile, I recommend that you challenge your doctor's opinion. (I >know that isn't easy, but you are entitled to ask for a second opinion, and >you can be sure of getting some reliable names of specialists to try from the >people on this list. ( I live in the UK so cannot help .) > >Best wishes to you, >Regards, >-- >Brian Collins <[log in to unmask]> > >Brian - No offense taken - after I sent the message I thought I probably should have clarified my situation - symptom dating back at least 10 years - but not diagnosed until a year ago. CAS