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    • #16375
      Andrew L.
      Participant

      Hello:

      I am wondering if there would be a way to start a group where we could support each other by discussing our exercise regimens and reporting what we did that day. Not a competition but a support system where we could keep each other motivated by talking about the exercise we did and how it made us feel.   Anyway looking for like minded people to who might want to do this with me….

    • #16379
      Jean Mellano
      Keymaster

      hi andrew, i am game… i will start off today..

      – 8 minutes speed bag

      – one hour weight training and balance exercises

      Exhausted and slow as usual after workout.  it seems whatever dopamine i have is all used up in my workout and my symptoms worsen.

       

    • #16383
      Jo S.
      Participant

      Hi, Andrew. Thanks for starting things off, Jean.

      I usually am up around 4:30 a.m. and do about 1 hour of “aerobic” yoga with a brief meditation. That’s actually the name of it (aerobic yoga), but it’s only aerobic if I go fast, and at that hour of the morning, I’m not all that speedy. 😀 However, after my session, I’m a lot more flexible.

      If the weather is good, I’ll get out for a 40- to 45-minute walk in addition to the yoga. If it isn’t, or if I’m not up for going out, I’ll bounce/jump and run (in place) on the rebounder (mini trampoline) for 15 minutes, sometimes with weights for part of my session.

    • #16391
      Andrew L.
      Participant

      Good work Jean and Jo! How much exercise I can do seems to be directly correlated with amount of sleep I get. 2 nights ago was a relatively rare good nite, so yesterday did a lot. Last night didn’t sleep too well. Anyway today pushed myself to do  1 hour Rock steady boxing class, moderately difficult ( decent aerobic workout, would call it a 6/10.) Note: instructor wouldn’t be happy, she thinks she is working us harder. Was dragging when I started, but seem to pick up energy as I moved along.  Ate lunch, dopamine wore off, couldn’t take next dose till digested food. So went into gym and did another 45 minutes or so moderate weights, all upper body. My fitness trainer told me yesterday to only lift to the point that I have about 2-3 more reps in the tanks so wouldn’t get too sore. Anyway lifting with dopamine worn off is always fun (not.)  Will probably do about 30 min gentle yoga stretches tonight.

      • #16392
        Jean Mellano
        Keymaster

        even though i sleep good, i am still exhausted when i wake up. i always tell myself tomorrow is another day

      • #16397
        Jo S.
        Participant

        Oh my goodness, Andrew — I’m exhausted just reading about all the exercise you do. You’re a beast!!!

    • #16403
      AnnMarie
      Participant

      Hi Andrew, would love to do this too. Getting over a back injury so I’ve been doing my PT exercises and walking the dogs daily. Trying to do some housework and gardening too and build up slowly to a more structured exercise program. I’m looking for accountability and am inspired by your hardcore routines!

      • #16423
        Jean Mellano
        Keymaster

        AnnMarie, great, feel free to post you workout daily in the thread and say how you feel after it.

    • #16407
      Jeffery Hill
      Participant

      In summer I do a modest amount of outdoor cycling and gardening.  Now that winter has arrived in Ontario, a lot of my exercise has moved indoors.  I’m hitting the gym up to 4 days a week.  I start with a 60 minute high intensity spin class, followed by 45 minutes of either weights/stretching or aquarobics.  On my non-gym days I try to get in at least 10,000 steps of walking.  I plan to add yoga and/or boxing as the winter progresses.

      I’m usually pretty tired, particularly on the second day of a back to back.  (Hey, when do I get to do “load management”? 🙂 )However I’m convinced that this work helps to alleviate cramping in my arms and legs.

      • #16413
        Jean Mellano
        Keymaster

        jeffrey, that is an impressive workout routine.  Do you have PS symptoms of apathy, lack of motivation and fatigue?  if so, how do you push through it?

    • #16406
      Margaret Nuttall
      Participant

      I’m ashamed of how much exercise I don’t do.  This may be the stimulus I need

      • #16412
        Jean Mellano
        Keymaster

        go for it Margaret!  start slow with something you enjoy.

    • #16416
      Jean Mellano
      Keymaster

      Thursday 11/14 (75) minutes Rock Steady Boxing, wiped out now.. 🙁

      Friday 11/15 (1) hour weights and balance exercises, 10 minutes speed bag, 45 min P/T), wiped out again…  next i clean the bunny room

      Saturday 11/16 (1) hour yoga, 30 minutes cardio

      • This reply was modified 4 weeks, 1 day ago by Jean Mellano.
      • This reply was modified 4 weeks, 1 day ago by Jean Mellano.
      • #16422
        Jo S.
        Participant

        But you went, so good for you, Jean!!! Now … take a nap. 🙂 You earned it!

        • #16424
          Jean Mellano
          Keymaster

          jo, thanks for encouragement. but, nap is not going to happen today, maybe tomorrow 🙂

    • #16434
      Christine
      Participant

      Hi! I’ve been doing Rock Steady Boxing 3 times/week for the past two years, but a couple of months ago decided I need a bit more of a challenge, so joined our local Y. My exercise routine is now

      Sunday: 1 hour spin class. Monday: 1 hour total body conditioning Tuesday: 1/2 hour on the elliptical machine, 1/2 hour core work-out Wednesday: Rock Steady Boxing 1.5 hours Thursday: 1 hour group power (weight class). Friday: 1 hour women on weights class (different focus than the Thursday class). Saturday: day off!

      Honestly, I’m exhausted with this routine, but it gets me going every morning, and really helps with my mood, especially now that winter is settling in. I get home from the gym and usually fall asleep for an hour! It’s weird how my PD is definitely progressing, but in some ways I’ve never been in such good shape. I have work-out buddies, so that helps a lot on the days I don’t feel like going.

      • #16442
        Jo S.
        Participant

        Wow! That is an impressive routine, Christine! I frequently say that PWP are often the most fit of any group with a chronic, degenerative disease! 😀

        • #16450
          Jean Mellano
          Keymaster

          i second your comment Jo and to Christine and Lou , great effort!

        • #16479
          Andrew L.
          Participant

          Agreed!

    • #16441
      Lou Hevly
      Participant

      I try to do 30 minutes of yoga every day, but generally manage only 3-4 times a week. It’s mostly work on flexibility and balance. I also have a stationary bike and I put the control at the greatest resistance and pedal as hard as I can for as long as I can, usually 2 minutes. It’s great for relieving the symptoms of Restless Legs Syndrome.

      • #16443
        Jo S.
        Participant

        That’s great, Lou! When my RLS kicks in (literally “kicks” in!), I also find that strenuous exercise is often the only way to relieve them (at least for a little while).

    • #16455
      Christine
      Participant

      I really liked yoga a few years ago, but by last year my tremor became so overwhelming during yoga classes I felt worse during the class instead of better. I tried again recently, but my tremor really exploded, became pretty much a full body tremor. Super uncomfortable.

      • #16461
        Jo S.
        Participant

        That’s too bad, Christine. I do yoga at home, not in a class. I think doing it around other people would stress me out more and make my tremor worse too.

    • #16480
      Andrew L.
      Participant

      First off, congrats to everyone here who does any form of exercise. Period.  All of us are challenged, some much more than others. For me, exercise is medicine.  Literally.  Like everyone here I have this bizarre (can use other, more inappropriate but accurate adjectives but don’t want to get kicked out) disease and there are times I feel absolutely awful, but at age almost 63 am also (oddly) the strongest and most fit that I have been in decades (have been an athlete most of my life.)  I look at my life now as one ongoing rehab project, for better or for worse, and I view exercise as a mandatory survival mechanism. I know that sounds dramatic but it is how I feel.  I take a rare day completely off only when my body completely shuts down and can’t push through it (seems like once every 2 weeks or so, when I start cramping in muscles I didn’t know existed ). Anyway, I do 30 min 3x per week (Tues, Thurs, Sat) of an exercise program (at it for about 6 months) with a trainer (recent college grad with degree in exercise physio) called PD warrior. This program began in Australia and is slowly making its way through Europe. While it is only used by physical therapists in Australia, the exercises are all online and my trainer was willing to learn them (also bought the book). They focus on balance, rapid movements, agility even some cognitive exercises thrown into the routine for good measure.  Plus we have added in a bunch of squats and lunges and cardio to the deal which have made legs quite strong,  All good to prevent falls. Don’t want to fall, don’t want to aspirate.   Have mastered them all and then some, we have ramped the degree of difficulty way up. But only do this 30 minutes a session 3x per week.  I am a lifetime tennis player but have switched to competitive pickle ball as can’t tolerate the heat in Florida  with outdoor tennis anymore (crazy amounts of sweating from Parkinson’s).  Usually play indoor pickle ball 2-3 hours 3x per week, usually good for about 5000-7000 steps on fit bit.  Also stretch every night (a 30 min light hatha yoga routine I learned), is mandatory to ease the stiffness after each day of exercise . So yesterday (Thurs) I did PD warrior with trainer for 30 minutes, then walked / ran 2.5 miles with hills on tread mill 45 minutes, and played 2 hours of competitive pickle ball last night. Have to admit I was very tired after, did mandatory light yoga routine before going to bed, not optional  b/c without it stiff as a board. Today I did back to back Rock steady boxing classes for a few hours, hit it very hard.   Will do mandatory light yoga tonight. Tomorrow I will report on tomorrow.  Hope everyone has a nice (and active! ) weekend!

      • #16482
        Jo S.
        Participant

        Holy smokes, Andrew! You’re incredible!

        • #16485
          AnnMarie
          Participant

          Amazing, Andrew! :0

    • #16488
      Jeffery Hill
      Participant

      Andrew,

      So much of what you wrote resonates with me!  I too am a life-long exerciser, and fortunately I love it; it’s not a chore.  Parkinson’s motivated me to change my lifestyle.  By retiring I accomplished two things:  reduce stress (which directly drives my tremor) and free up time for exercise (which I consider my new career).  You’ve convinced me that I have to get going on the yoga.  I have a stiffness that runs from my back into my hips that I find hard to shake.  And your point about the sweat makes me laugh:  at the end of my 60 minute spin class there’s literally a puddle on the floor.  It’s almost embarrassing, and I have to get down on hands and knees to clean it up before leaving!

       

      • #16500
        Andrew L.
        Participant

        Hi Jeffrey: Nice to find a fellow traveler. I also love exercise, it is the only time that I feel prolonged periods of something resembling “normal”. I guess I am trying to figure out when and how to incorporate exercise “off days”, since I feel so much worse doing nothing. Do you take exercise days off? As for yoga- it is not a cure all for me, but rather a necessity. After a big day of exercise, I only feel slightly crippled versus completely crippled when I don’t do yoga. I do a half hour gentle routine for beginners that I learned at the “Y” years back. Many days after exercising I just want to lay on the couch, which is fine till I try to get up, haha. Hope we can continue to compare notes. Keep fighting!

    • #16495
      Christine
      Participant

      Hi Andrew, I’m glad you mentioned pickle ball. I’ve heard it’s tons of fun. I think I will look into that this winter.

      Jeffery, I too tell people that exercising is my new job. Lucky to be able to have the time, that’s for sure!

    • #16496
      Jean Mellano
      Keymaster

      hi christine

      my cousin is a HUGE fan of pickleball.  it seems to be growing a lot in long island. it is key to find something you enjoy

    • #16501
      Andrew L.
      Participant

      Hi Christine: Exercising is my new job as well. Am thinking pickle ball is probably good on many levels. Lot of fast movements, eye hand coordination , and tracking the ball as it flies from side to side , esp with better players. Not too happy with my ability to transition from power to touch game, trying not to be too self critical. Yesterday did my 30 min with trainer, followed by 1 hour weights (upper and lower body) and then 1/2 hour of aerobics (elliptical and treadmill). Today 3 hours pickle ball. Tomorrow may be a necessity day of rest…(when I told my significant other she was skeptical.) My neuro told me to incorporate rest days, haven’t figured out how to do this and still feel well…

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