 |
 |
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]>