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J of Grey Cottage

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J of Grey Cottage last won the day on September 3 2017

J of Grey Cottage had the most liked content!

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About J of Grey Cottage

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    Advanced Member
  • Birthday 02/16/1946

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    Literature, gardening, music

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  1. Akathesia, is this present in your off?

    My balance has declined slightly since adding sinemet to my drug cocktail. But I have no way of knowing whether sinemet is a cause or if time and the natural advancement of PD are responsible. J
  2. Single with PD

    Yes, I think his phrase was "the beginning of dyskinesia" or "the first sign of dyskinesia." I notice it most when I'm due for the next dose of sinemet. That may seem odd: the side effect is more pronounced when the drug is waning in my body. J
  3. Antidepressants and Rasagiline and Pramipexola

    Hi, Bobbie -- I love your new photo! I should change mine one of these days. It was taken three years ago. Azilect doesn't do anything noticeable for me either. However, my doctors seem to have faith in its ability to slow the progress of PD, and my progress has certainly been slow. Therefore, I keep taking it. Maybe my case would be slow even without it, but I don't care to find out the hard way that Azilect was really having its desired effect. The same holds true for CoQ10. It may be doing nothing, but I continue to take 200 mg. per day. (I use Jarrow Formulas' Ubiquinol.) When I first started taking Mirapex, only a small dose eliminated my symptoms. But as time passed, I needed more and graduated to larger daily doses. Eventually, Parkinson's seems to overcome our efforts to fight it. As I mentioned, I was on 6 mg. per day for a long time, a maximal dosage. But when my symptoms emerged again, my doctor wanted to add a different medication; hence, the carb/levo. Amantadine I have taken almost from the start; I have no idea if it is doing anything at all. My current doctor cut my dosage in half, and I noticed no changes. Best of luck, J
  4. Music and Parkinson's Disease

    Thanks for posting that song. I remember when it first became popular -- somewhere around 1970?
  5. Music and Parkinson's Disease

    Yes, Linda, you have pinpointed one of an amateur's major difficulties in playing this piece. Just before the music settles back into the peace of the cradle song again at the conclusion, there is that passage of incomplete triplets. One note of each triplet is missing, replaced by a rest. The other two notes are far apart, so the muscle memory involved is crucial to playing that passage. The pianist's fingers have to leap to the right keys at lightning speed. I'm still working on it but have to slow the tempo there. The other really hard part is a passage in the middle, where there are six notes for the right hand for every eighth note of the left hand. When a professional plays it perfectly, it sounds like a waterfall. Sometimes my waterfall slows to a trickle. J
  6. Music and Parkinson's Disease

    Linda, believe me -- I am not being unnecessarily modest about my playing. I said that as an amateur I play reasonably well. These recordings are professionals playing exceptionally well! I particularly like the interpretation of Zhi Chao Julian Jia. But I still have to slow the tempo in two parts of the piece just to play all the notes, and I don't believe I have ever played it all the way through without at least two or three errors. As much as I enjoy playing the piano, listeners would never be as pleased as with these fine recordings. J
  7. Music and Parkinson's Disease

    Yes, Pa Pa Doug, it definitely helps keep the fingers limber. I sometimes find exercises discouraging, though, because they show up any little faults of coordination. J
  8. Music and Parkinson's Disease

    Superdecooper, I'm so glad to have helped. You sound like a very accomplished musician. I do play Handel's Largo, have not played the Mozart sonata you mention. As for Hafter's "Hommage à Frederic Moupour," I am a picture of ignorance, having never heard either name, I think. Back to Google for me! Keep the music flowing! J
  9. What drugs? supplements like inisine?

    Hello, hiker -- Your case of PD sounds exactly like mine --- in 1998! I had the same first symptoms but with gastroparesis added. I waited to take any medication for several months, at which point my symptoms were so noticeable to me that I wanted to get rid of them. My first med was Mirapex (pramipexole) and within no more than three weeks, all my symptoms had disappeared. It was like a miracle. As the years went by, of course, the symptoms reemerged and called for larger doses and eventually new meds added to my regime. As soon as Azilect came on the market, my doctor prescribed it, citing some of the research indicating that it might slow the progress of PD. Since then, I have added Sinemet and Amantadine. As supplements, I take Ubiquinal and Vitamin C. For whatever reason, and I really do not know what it is, my case of PD has not advanced beyond the first stage in the past 20 years. In addition to the right combination of drugs for your individual case, the other two important factors you can manage are exercise and attitude. You are a hiker, so you don't need to hear advice on exercise from me! Laughter and optimism can also help us fight this disease. You sound like a strong, resourceful person who will fight hard. Good luck! J
  10. Music and Parkinson's Disease

    Superdecooper -- When I first tried returning to classical piano after a few years with PD, I could barely coordinate my two hands. I often had a delayed muscular response from one finger or another that translated into mistimed notes. I tried certain pieces of music that seemed hopelessly beyond my ability. Because I only play for my own amusement, I didn't fret too much over it, but I was definitely discouraged. I thought I'd just stay with simple pieces of music that I could master. After doing that regularly, playing little pieces I had learned as a child or in my teens, I noticed improvement, so I gradually advanced to more difficult music. I had thought nerve/muscle coordination could not be improved, but I was wrong. Now, when I time my medication just right, I get the same intense feeling of getting inside the music that I used to have years ago. For an amateur, I can play reasonably well such things as Chopin's "Berceuse" and "Fantasy Impromptu in C-sharp Minor" and Beethoven's "Sonate Pathétique" and am currently learning Mozart's "Sonata No. 16 for Piano." You'll never see me on the concert stage, of course, but with almost daily practice, I have improved enough to find joy in playing. J
  11. PD Guy - Shot Thru The Heart

    I just want to interject in this thread that you all (PD_guy_MN, Gardener, Superdecooper, & BillBRNC) sound like such wise, thoughtful, considerate men that I believe you will find solutions to these marital issues. Sometimes marriages have to change shape. Best wishes, J
  12. Antidepressants and Rasagiline and Pramipexola

    BobbieH and johnny -- First, my apologies for replying so late. I have not been checking the forum lately. For a few years I was active on three forums and found that they were gradually consuming all my free time. Therefore, I have cut back on my online time considerably. BobbieH: Yes, I am still taking that hideously long list of medications! When I see them written out, I realize how many chemicals I'm putting in my body. But they do work for me. Once a few years ago an acquaintance learned that I have PD. She asked how I was keeping it under such control. When I told her that I take pills at four times during the day, she looked absolutely horrified. "You mean you'll have to take pills every day for life?" I had to laugh. And I told her that given the choice of swallowing pills or losing my ability to walk, I had never found it a difficult decision. Then there are those people who say, "But you don't have a tremor. Are you sure you have PD?" If we remain patient, I suppose, we can spread a little education out there. John: I know I am very fortunate in being able to tolerate these strong medications. For several years I was taking 6 mg. per day of Pramipexole (Mirapex)! My current doctor asked me to reduce that to 4.5 mg., which I did, adding a small dose of Sinemet. The only med that gives me a noticeable side effect is Sinemet: I have begun to have a mild form of dyskinesis, swaying my body from the hips. If I notice it, I can stop it by concentration, but often I'm swaying without even knowing it. My very slowly progressing case of PD is a piece of good fortune. I had my first symptoms approximately 21 years ago and am now 71 years old. When I was participating in a research program last year, a very young doctor examined me before and after the physical tasks I performed for the study. He said, "It's amazing! You've had this so long without marked symptoms. You probably won't . . . um . . . I mean you aren't going to . . . you'll probably never . . ." Finally I put him out of his misery and said, "Yes, I know what you're trying to say. I won't live long enough to get to the most advanced stage." J
  13. Music and Parkinson's Disease

    Linda and MusicMan -- I have tried recording my playing but have only my camera's video function, and it makes the tone of the piano sound like a tinny toy piano. My Schimmel piano is really beautiful in sound, but I don't know how to record it well. J
  14. Music and Parkinson's Disease

    That's great, MusicMan! I have returned to the forum after a long break, and what a fine posting to start with! Thanks. And Prospector99, I had to laugh when I read your post. We are proof of the commonplace that every PD case is different: it's Mirapex that subdues all my symptoms and gives me no side effects! I take it with rasagiline and now also a low dose of carbidopa/levodopa. My piano playing is still going well after all these years (over 20 with PD), but I am strictly an amateur. I play for friends but never in public performance. J
  15. Antidepressants and Rasagiline and Pramipexola

    Hello, Rainbow -- Lots of questions are good! No need to apologize. I was taking Pramipexole and Amantadine before Rasagiline came on the market. But as soon as it did, my doctor wanted me to add it to my regimen of drugs, which I did. It is hard to say what each drug accomplishes for me, but I know that Pramipexole (Mirapex) is my chief symptom fighter. It eliminated my handwriting problem, any tremors I had, my awkward gait, and more. Whether Amantadine or Rasagiline or both may be responsible for delaying the disease's progress I do not know. However, I have now had PD more than 20 years, and I am still in the first stage of development. My doctors are not sure why, but we don't want to change anything in my treatment when I am lucky enough to be doing so well. Exercise is important. For many years of my PD, I exercised strenuously and often. I am now 71 years old and have slacked off a lot without noticing any difference. I read an article not long ago stating that exercise beyond 45 minutes does not do any more for the body. My results make me believe it. I used to work on weight machines and the elliptical more than I do now. I have been practicing tai chi for five years and find it very helpful with flexibility and balance. I also walk two to five miles per day five days a week over quite hilly trails and sidewalks. If your mother is young and can do more, bicycling is reputedly excellent for many PD patients, too. Or she could join a square dancing or line dancing class. Your mother is fortunate to have you as her support and her researcher! Good luck to both of you. J