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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. >