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    • #20015
      Charles H Levin
      Participant

      I was recently tested for genetic mutations to see if I carry the lrrk2 gene; I do. This now means I’m eligible to be part of a study by Denali Therapeutics that seeks to repair that genetic defect (at least that’s how I understood my doctor’s explanation).

      I’m still unclear about other details as are the people at Cedars Sinai in LA who I’m working with … No one seems to know if what phase this will be and when it will start. The study coordinator at Cedars was confident that my doc’s patients who qualify will be entered into the study ….

      Eligibility criteria are a PD Diagnosis, LRRK2 gene and Ashkenazi Jewish descent …

      If anyone else has more details on this, I would appreciate hearing from you …

    • #18959
      Charles H Levin
      Participant

      I was also going to post about the UCSD study (posted above by Bob Hodgson) that popped up last week on numerous health news feeds … This does appear to be very exciting news in that the researchers accidentally got mice to regenerate dopamine-producing neuron cells … all the mice recovered from their PD symptoms which never came back for the duration of their lives … When you think about the science of Parkinson’s as we know it, this might be groundbreaking …

      I exchanged emails with the co-author, Dr. William Mobley. I asked how long before they can start clinical trials. He said “years.”

      I would love to hear from anyone who knows more about the research trial process, the different phases and the kinds of hurdles involved, financial and regulatory that are involved.

    • #17414
      Charles H Levin
      Participant

      I am doing something called Neuroboxing … kind of an evolutionary successor to RSB in that it can be tailored to other neurodegenerative diseases like stroke, MS or traumatic brain injury …

      I’ve been doing it about six weeks and have noticed less rigidity in my neck and some improvement in my balance. I also notice that typing with my left hand is less strained. Some of these improvements come and go, but I’ve only been at it for six weeks. We do some warmup stretches and calisthenics, then work on boxing and then a cool down with weights, crunches, push ups, more stretches …

      Right now, the class meets twice a week, but they plan on adding a third day and possibly an evening session ..

      I really enjoy it, which was a pleasant surprise. I love the work out, the camaraderie and the various strategy and physical craft involved in the sport …

       

       

    • #17339
      Charles H Levin
      Participant

      Joe E … Reading back on your first post … I quit playing in March (three months before diagnosis) as playing was becoming more difficult … I didn’t know it at the time, but I was experiencing slowness of muscle movement in my left hand and leg/foot … Controlling my hi-hat pedal had become difficult for at least six months or a year before that .. In some cases, I couldn’t sync it up with my bass drum pedal on the simplest of rhythms … What docs thought was Essential Tremor in my left hand had already complicated things, but this was adding a new level of frustration … patterns that I had learned and felt I could rely on had seemingly disappeared, as if I had never nailed the muscle memory to begin with … When I went for my second opinion, the doctor had me tap my foot, toe to heel, back and forth quickly … the right foot was fine … the left foot could barely do it … at this point, I can’t easily move my left foot in circles for a yoga class …

      However, I had already been handling management and publicity chores for a band I founded, so when I quit in March, I kept doing that full time … it’s fulfilling and I have all the skills necessary to do it well and learn more details of that role … and that band is doing well at its gigs (mostly high-end listening clubs and performing arts centers) …

       

      I can say with some certainty that the boxing really helps … I had gone about three weeks before the holidays hit and I could feel improvements … then we had to miss classes as they were on Xmas day and there was only one class that week … my typing became a little more strained and my gait got a little wobbly again … before the boxing, I would have a slight stumble to the right whenever I walked … with regular classes, that’s not a problem ..

      I am also taking up new hobbies … I start a photography class in  a week … the camera lenses all have image stabilization, so my tremor (which is not that bad) does not interfere … and there’s always tripods … Meanwhile, I’m almost done co-writing a memoir with my teacher, Joe La Barbera, on his two years playing with Bill Evans … so I am busy and always feel energized to get something done the minute I wake up (I think I was born Type A) …

      I have had a few moments where I feel a little confused, but I’m always able to reach some clarity in a few seconds .. sometimes I pick the wrong word when I’m speaking but know it instantly and correct myself … as for emotions, I feel stable … better than the year or so leading up to when I quit … that was a difficult decision and, in hindsight, I think I was growing a bit depressed and withdrawn from friends … if anything, I feel almost relieved now and a bit more open to people …

      No question that this kind of diagnosis really sharpens your bucket list … what you want to do with the remaining good years of health you have left … I plan on traveling a bit more, reading books I never got around to  and staying as healthy as possible …

      Happy New Year …

      cl

       

       

    • #17301
      Charles H Levin
      Participant

      Hi Jo S.

      Just re-read your reply … ET diagnosis 20 years ago? And PD this last February? That’s a long time … twice as long as me … what were/are your other PD symptoms and how long ago did they appear …

      Re: Linda’s diagnosis … https://www.cnn.com/2019/12/28/entertainment/linda-ronstadt-anderson-cooper-intv/index.html

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