Forum Replies Created

  • bill-n

    Member
    May 13, 2021 at 8:05 pm in reply to: Parkinson’s plus?

    I was diagnosed with PD in August of 2019 at the age of 55.  This January I got Covid and 3 weeks later I was diagnosed with optic neuritis which led to a diagnosis of MOG, an autoimmune demyelinating disease similar to MS.  I was pissed off initially thinking how could I get two ‘incurable’ neurological diseases in under 2 years!  Prior to PD I was perfectly healthy with no need for any medications.  Then I moved on and got into fight mode…. exercising 7 days a week, switching to a vegetarian diet, etc.  No one has a clue that I have PD or MOG.  Fortunately my vision is still excellent for my age.  Other than consuming a hand full of pills daily, I lead a fairly normal life.  Exercise is so key.

  • bill-n

    Member
    March 13, 2020 at 7:35 am in reply to: Fatigue after exercise

    Fatigue has been a challenge for me but so far I have been very consistent with exercise and three times a week I usually do strength training/movement class for an hour followed up with 5000m of rowing.  After doing this I would say I feel no better than before I started.  Prior to PD I had been doing the same strength/movement class and always felt better afterwards.  I also do a one on one strength training once per week but will probably stop that soon.

    I’ve never been much of a cardio guy but my Dr said that cardio is thought to slow the progression of PD.  That’s why I added the rowing to what I had been doing all along.  For the same reasons, last year I started spinning at CycleBar.  It was very challenging at first but I noticed that following my spin, for about 2 hr afterward I would feel fantastic.  The feeling is like that of being a teenager all over again.  I’m sure it’s partly the serotonin and other endorphins but I can’t describe what an amazing feeling it is and it also seems to blow out the PD cloudiness too.  I have tried 45, 60, and 75 minutes classes and surprisingly I like the longest 75 minutes the best.  Compared to any other type of exercise, I have very little to no pain immediately after and days after.  Fatigue is not that bad considering the amount of expertise.  I really enjoy getting off the bike being completely soaked in sweat with a puddle under the bike.  It gives me a sense of accomplishment and something to celebrate and be proud of.

    My wife found a clinical trial that evaluates the neuroprotective effects of cycling and I signed up for that.  We meet with the people at Cleveland Clinic next month to get started on the one year trial.  I may have to switch my regimen to whatever they recommend if I am selected but if I’m in the control group, I’ll keep going to CycleBar.

    I tell people what I’m doing sometimes and usually they are shocked.  I’m fortunate that I can commit the time it takes to do all of it.  I feel like 1/3 of my day is committed to exercising.  I don’t know how long I can keep doing this but I can see the spinning as something I can do for a long time.

    I have found like some others have mentioned that if I sit too much, I start feeling crappy.  Usually it just takes getting up and walking around a little to feel better. The change is very quick.  I’ve also noticed that my C/L seems more effective on the days I’m moving more.  I don’t usually feel like getting moving but I always feel better afterward.