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Bev, you wrote: > Then, in 1982 in an issue of Clinical Neuropharmacology , edited by > Dr. Stanley Fahn on the management of PD, I read for the first time of the > DID response. This is what Dr. Joseph Jankovic, noted PD research neuro > from Baylor University Medical School in Houston, Texas wrote speaking of > an experiment evidently done by Dr. Manfred D. Muenter and his colleagues > to determine levodopa therapy: > After years of dealing with this phenomenon I wish I had some satisfactory > answer to it, but I don't, nor have the neurologists, as far as I know. My > longevity with PD makes me very sensitive to meds. I only take five 25/100 > Sinemet a day + 1 Eldepryl,, 1 amantadine, one 2.5 bromocriptine. Fortuna- > tely I can still function pretty well part ofthe day. It's taken me hours > to write this... > > BTW, do any of you notice a build-up of Sinemet reaction in the form > of dyskinesia every five weeks or so? This happens to me and I get almost a > whole day of dyskinesia. It's exhausting! Riding my stationary bike like > mad is my only recourse to wear off the energy. XXXXXXXXXXXXXXXX Dear Bev ( in south californie ) You are a real veteran, from the park's prehistory when l-dopa did not exist. Of course I read your mail with great interest. It must be tough to still not have, after such a long time, a neuro who understands your problems. Still, I hope that it is a comfort for you to hear from others with the same symptoms. I have much in common with you and I did like to read how long you have managed to live with it. Like you I had symptoms very young. As long as I remember I had a rest tremor in my hands. Like you I take very low doses of med's : 3 x sinemet 100\25 (1x1 and 4x1/2) 5 x 1\2 of permax o.25 2x eldepryl 5x orphenadrine 50mg. I too have a day once in a while that the dyskinesia does not stop, but I don't know wether that happens with regular time intervals. I'll try to notice from now. It is indeed exhausting and very unpleasant. I never knew this topic was so unknown. It is not very exceptional. These symptoms are so confusing if one does not know which is the stimulus of that response. So it has been for me. >From the start of being on anti-park. med's I suffered from a softer kind of dyphasic dyskinesia. I could not relax, only with efford sit without moving when the L-Dopa had finished to do his job. That symptom never stopped. It increased during all the years. In the past it was often more felt by myself than seen by others. The confusing thing was that I felt fine when the med's were high and bad when they were low. It seemed to make sense to take more. I did and the results were more "off"dyskine- sia and losing part of my "good times". My neuro said I should not take more but less leva dopa. The impulses to move were caused by l-dopa and were always worse with higher intake. I could hardly believe him, but had to try anyhow. I had no alternative. So I gave it the benefit of the doubt. And the result showed my neuro was right. So the symptoms were caused by a too high dosis but were manifest after the dosis had diminished. A sort of abstinence phenomenon. On my next visit my neuro said the exact causes was unknown, but it indeed seemed to be the same phenomenon that addicts suffer from (cold turkey) and that unfortunately it was not easy to treat. To stop with sinemet was not an option. My diagnosis of PD was beyond any reasonable doubt because I had a PAT -SCAN with a clear result. In this aspect my history differs from yours, Bev. From the start of mij illness I had a neuro, who did understand the phenomenon of "off"-dyskinesia. Even at the time of my diagnosis (1984) this phenomenon was quite well known, as is shown by the following articles: Barbeau A. Diphasic dyskinesia during levadopa therapy. (Lancet 1,756(1975) Marsden, C.D. "On- Off" phenomena in Parkinsons disease. in: U.K.Rinne e.a.(eds) Parkinson's disease. Current progress, problems and management. Elsevier Amsterdam (1980) Muenter M.D., N.S.Sharpless, G.M.Tyce, F.L.Darley: Patterns of dystonia (IDI and DID in response to l-dopa therapy for Parkinson's disease. In: W.B. Birkmeyer, O Hornykiewicz (eds) Advances in Parkinsonism 330-360, Basel, 1976. I have an ambivalent relation with L-Dopa. The good thing is: as long as it is effective it gives not only the possibility of movement but also a feeling of vitality. I not only can walk, I also like it. To my experience no other medicine can give that. This could be a reason not to postpone the use of L-dopa for people who can do without it, but have lost the pleasure of motoric functioning. An other thing that is a part of good life: to feel completely relaxed and awake at the same time. This seems to be beyond my reach.