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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. J of Grey Cottage

    Antidepressants and Rasagiline and Pramipexola

    Thanks so much for posting that again, LAD. I hadn't seen it before, and it is so appropriate! J
  2. J of Grey Cottage

    Antidepressants and Rasagiline and Pramipexola

    Hi, Natasha Kogan -- You are right: this can be a painful subject. Other people may tell us how to feel or what to do. But I believe the patient, the one with the disease, knows best what is happening. Optimism can help us; so can activity. But they are not cures. People have told me, too, that I look healthy and therefore I am healthy. Since I am lucky enough to have a slow-moving case of PD, I realize that it is easier for me than for some others to maintain a very positive attitude. Although I encourage others to be as happy as they can in their circumstances, I hope I never sound as if I am telling them how they should feel or that I really don't believe they are ill. We all do the best we can, but if we have PD, we are ill to some degree, no matter how we look. J
  3. J of Grey Cottage

    Just Interesting Things about This and That

    Very humorous photo! I also liked the picture of the three airborne children --- though I had to try to focus on their exuberance instead of their imminent landing! J
  4. J of Grey Cottage

    Akathesia, is this present in your off?

    Sherrie, your description matches my experience fairly closely. The swaying is not related to emotions; it is just motion that the body seems to need to perform. Your calling it "mandatory" captures the sensation exactly. My dyskinesia did not begin as soon as yours, however. I think I had taken carb/levo nearly three years before I noticed any swaying. I'm going to try that foot-tapping next time! J
  5. J of Grey Cottage

    Antidepressants and Rasagiline and Pramipexola

    Hi, Sherrie -- I usually don't notice swaying until about three to four hours after a dose. J
  6. J of Grey Cottage

    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
  7. J of Grey Cottage

    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
  8. J of Grey Cottage

    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
  9. J of Grey Cottage

    Music and Parkinson's Disease

    Thanks for posting that song. I remember when it first became popular -- somewhere around 1970?
  10. J of Grey Cottage

    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
  11. J of Grey Cottage

    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
  12. J of Grey Cottage

    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
  13. J of Grey Cottage

    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
  14. J of Grey Cottage

    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
  15. J of Grey Cottage

    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