Parkinson's and Exercise question

Advice from the experts. I have a question regarding exercise and parkinson’s. I read everywhere how good exercise is for people with parkinson’s. Every time I start exercising for a few days, my symptoms get worse and it appears to me anyway that the disease appears to progress. I will get new symptoms that don’t seem to go away. Specifically I try to power walk or ride the exercise bike. After exercising, the rest of the day I feel pretty good but the next day, I feel ok but the 2nd day after I feel worse than the day before exercising. I exercise 30 to 40 minutes at a time. I have been told maybe I am overdoing it?  Does anyone else have the same experience I do?   Or can this be specific to just me? Any responses would be great. FYI, I am on requip, amantadine & azilect. I do not take sinemet at this time as my doctor says it is too early to do this and I need to hold off.  A 2nd question for the group if you can answer.  Can exercise each day start to diminish symptoms overall or is that just wishfull thinking?

Thank you in advance,

Todd

37 Replies

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  • Exercise each day can and does  diminish symptoms overall!!!

    It sounds like you are not staying with your exercise long enough. 

    As long as you do not hurt yourself you are not over exercising. I don't mean sore muscles you will get sore. Vary the exercise from day to day work all muscle groups. Work on your core muscles they are the most important.  

    I exercise 5 or six days a week. I do crossfit and i have little or no serious down time. I also do a hour of weight work at home 2 or 3 days a week. 

     I take carbidopa levodopa 1 50/200 er and   1  25/100  every 4 hours 5 times a day, 1 azilect and 1 6mg requip once a day.  

    You must stay with exercise for a few months in my opinion to tell a if it will work for you. at first you may not get much relief but over the long haul i think it will do you good.

    I am 62 10 years DX with PD. 

    Today the work out was run a mile 3 minute rest and then do 

    100 kettle bell swings (53 lb)

  • My opinion, your doctor is very wise ,stay with that guy

    I find the following directly affect how I feel and what I am able to do

    What I  ate last and when ,  proteins vs carbs, snacks vs big meals, sugar and caffeine intake, amount of  wheat  (not including donuts) 

    How long it has been since I slept for at least 20 min.

    What medication and when 

    How much exercise I have had , and type  and when

    How much sleep last night

    How much  stress yesterday and today

    Regularity bowls

    How depressed and fed up, an feeling sorry for myself vs the last time I laughed. 

    sunshine vs cloud

    Rain, snow, temperature outside

    Level of stamina and drive        

    General health

    Luck

    The interaction of all the above creating a very large number of permutations and combinations that make any routine or expectation of results almost impossible.

     "Can exercise each day start to diminish symptoms overall"

    YES

  • GymBag Thanks for sharing. Very interesting.

  • Todd,  if you are new to doing exercise, it may take your body a while to adjust. And as with so many things w PWP,   all of our mileages may vary on particular exercises.  One variable is whether you were active before.  Another, whether you are tremor dominant or contend more with gait and rigidity issues. Another: whether you are otherwise sedentary in your day to day, hour by hour life.

    A year and a half in to diagnosis, I make a point to do some exercise every day.  Mine is non-tremor dominant PD and anything that gets me to rotate my torso and swing my left arm is a plus - in the present.  I also keep at it for the growth factor in my brain, an investment in the future, (if i may be so boldly optimistic.)  

    Some specifics:  tandem bike riding at 85rpm 1 hour 3x a week is my basic conditioning foundation and is based on the Jay Alberts idea of Forced Exercise; swimming laps - backstroke mainly - helps with rotation and just gets me to stretch out in a way that eludes me on land;  boxing, which I recently took up (at times it feels like the bag punches back)  really gets me to work on the rotation and think about it in the other exercises.  Dance and tai chi are also part of my week, as is walking with sticks.

    I also do a type of physical therapy called Postural Restoration which helps enormously, making me conscious of how to align myself when doing all those exercises.  I generally don't hurt. Except, that is, on days when I don't exercise.

    i just read back what I laid out there and if I'd read this two years ago - pre-diagnosis - yeesh, I would wonder where this 57-year-old woman found the time to do all that.   But that was then and this, now, this is just what I have to do..  

    It’s not instantaneous, sorting out which exercise is beneficial to you.  (I started with just the biking a year ago, then added on.)  Nor can I give you a formula to let you know when, in your exercise,  you are about to reach the point of diminishing returns - when the pain is about to outweigh the gain.  (If someone else out there has figured that out, do tell.)

    That said, it's worth plugging away at and not relying on meds alone.  Do keep at finding an exercise that works for you. Your brain will thank you.

    Good luck.

  • Hi Todd. Dare I suggest that I think you are going about it in the wrong way. I don't know your age but my guess is that you probably have not done much exercise for quite some time, like most of us.

    When I was diagnosed in 1992 I decided to increase my gym from 60 minutes per day to 90 minutes, six days of the week. For the next two years I did that, only to see my symptoms getting worse much quicker than they had before diagnosis. My symptoms started in 1963 and more symptoms continued to appear as the years went by until diagnosis, when I had started to shuffle and it was easy to diagnose the Pd.

    In 1994 I stopped all the gym and joined the Walk for LIFE program here in South Africa. They would not let me walk FAST for more than 20 minutes every 2nd day. After 2 weeks they allowed me to increase the time by 5 minutes only and to do that every 2nd week until I was walking for 1 hour and NO MORE.

    Do you know what? My time per kilometre had come down from over 10.5 minutes to less than 9 minutes per kilometre. That was only 4 months after starting the walking.

    YOUR MUSCLES NEED TIME TO RECOVER FROM EXTREME EXERCISE! so don't do the same exercise every day!

    Maybe you, like me, were doing too much and your muscles could not recover from that exercise.

    I had been doing 1 hour of exercise per day for 22 years before I was finally diagnosed. It took 29 years after that first symptom arrived before the doctors could diagnose the Pd. I can only think that the exercise helped to slow down the progression of the Pd, but when I increased the exercise it speeded up the progression.

    8 years after starting the FAST walking I was able to come off my Pd medication.

    That must tell you something!

    John

  • Walk for LIFE, is that an international program? I'm interested in learning more about them. But I must say, when I start walking (especially up stairs) I can feel my knees giving out. My dog and I walk a couple times a day, but I can only manage four or five blocks.

  • Hi Beckey. It may have spread to Australia and New Zealand but here in South Africa it has closed down in many places, which is such a pity. The reason for closing down was that it became too expensive. People could not see why they had to pay so much for walking around their own suburb, which costs nothing. The answer to that question is that many people do not have the willpower to go out and walk every second day for the benefit of their health. They need to do it with other people in order to keep that commitment.

    My late wife and I stopped going to Walk for LIFE because the lady who ran our group retiired and nobody took her place. Interestingly, she announced her retirement after having received all her subscriptions in for the following year. Yes, we were able to go to another group without paying more subs but that group was too far away from where we lived and we had to drive through rush hour traffic and it took us too long to get there and back, so we left and carried on walking around our suburbs as we had been doing for several years. I still do the walking but on my own.

    The walking has proved so successful in not only helping with my Pd but my general health as well. At 81 I am still able to walk 7 kilometres in less than  1 hour. I am going to see my doctor for an 'annual' check-up, which I have not done in the last 5 years, but because I plan to go to the USA and Canada for 3 months I thought I should just be safe and get my doctor to give me the once-over.

    John

  • JohnPepper Thanks. Good advice.

  • I find tai chi works for me twice week with walking as well. I am still active in my garden and do 4hrs week with a cleaning job. I have to spread out the exercise carefully or i end up sore and not able to function. I believe that exercise is the most important thing to do tocontrol your parkinsons. Second important is brain exercses like crosswords luminosity is an online brain games..i am now 60yrs and was dyanosed at 44 ys but symmtoms started inmy late 30,s So far I am completely independent with no extra help hope this helps

  • Tai chi and gardening are great for the morale too.

  • All I can say from our experience is walk, walk, walk!     My husband did not like exercising at a gym or at home for that matter, but he did like to walk.   We had walked almost every morning for years BEFORE he was diagnosed which was 15 years ago.   It then became a must to walk so if it rained we went to the Mall and walked with the early morning folks. Walking every morning one mile at least then became our routine.   We only varied where we walked so we wouldn't get bored....our neighborhood, trails in nearby woods, on the beach.  It has worked for my husband.   He worked for 10 years after diagnosis and is still walking (albeit slowly) 15 years later. He is 87 years old!   The last few years he has gone to Day Care a few times a week where a PT works with him.   That he likes as she targets where he is specifically stiff.  My husband takes the meds most PD people mention on this web site plus from the beginning he has been taken 400 mg. per day of Coenzyme Q-10.   His neuro felt it couldn't hurt him and in the long term might help.   He recently put him on Rytary .... glad to report he no longer freezes when he is getting near the next dosage time.    This is a long reply....but hope it contains something that can help you.

    Please start by walking................

  • I am a strong proponent of taking as little medicine as possible, but as much as is needed, and  using exercise, particularly fast-paced cycling, as a way of slowing the progression and perhaps even restoring some functions lost to PD.  I made a video for the World Parkinson's Congress, which may encourage you to stick with a long term exercise regime.

    Yesterday I received an email from a friend who forwarded this email from one of her clients: "I just finished reading Nan's book. Though I technically purchased it for my friend with Parkinson's, I've found it more helpful in these past few days than all of the support group, books, and research articles I've read in the last two years combined. I can't thank you enough for having it in your office."   BTW, I'm 70 and was diagnosed at 62.

  • I keep haranguing the San Francisco library to buy the book -- to the tune of several copies.

  • Thank you Beckey.  That would  be nice!  It can also be ordered from me, autographed no less.  $23 includes tax and shipping.  Checks can be made to Nan Little, 1227 22nd Ave. E., Seattle, WA 98112

  • hello Todd

    Im a nurse and a caregiver for my dad who has PD.

    Sounds like you have a good movement disorder specialist, neurologist.

    I know that exercise makes a big difference even with his advanced PD.

    Maybe you are over doing it, scale it back a bit see how that works. Also speak with your doctor on the type of exercise it could be the type of exercise you are doing.

    Some great studies are out on bicycling and stationary bikes that have given great results. My dad uses a stationary recumbent bike in front of a chair this mostly helps leg strength it can also be put on a table for arms. Found in stores in sporting goods.

    theracycle studies have been done with this bike and PD.

    theracycle.com/conditions/e...

    MY FAVORITE THAT HAS WORKED WONDERFULE WITH MY DAD WITH HIS ADVANCED PD IS LSVT BIG THERAPY, THEY HAVE IT IN PHYSICAL AND SPEECH.

    AT THIS SITE YOU CAN POSSIBLY FIND A THERAPIST IN YOUR AREA AND SEE IF YOUR PHYSICIAN WILL GIVE YOU AND ORDER FOR THERAPY. THEN YOU CAN DO IT AT HOME.

    MY DAD IS 76 HAS HAD PD FOR 21 YEARS AND HAD BACK SURGERY THAT PUT HIM IN BED AND WHEELCHAIR, HE WENT FROM WHEELCHAIR TO WALKER THEN TO CANE IN A MATTER OF A FEW MONTHS WITH THIS THERAPY ITS AMAZING IT IS STRETCHING AND AT THIS SITE IS LIST OF THERAPIST and information.

    lsvtglobal.com/big-certific...

    Low intensity exercise is good.

    walking in a pool or water aeorobics, is good.

    walking. Space activities out and see if that helps. Sorry this is long but he really got great results, this therapy seams to be awesome at helping patients with symptom control.

    boxing for Parkinsons PUNCHING OUT PARKINSONS, classes done by a boxer that does classes this is very interesting .

    facebook.com/PunchingOutPar...

    Best of Luck

    Kim

  • I do crossfit

    The people there are great

  • Does anyone have any ideas about the best exercise for tremors?

  • ok....I can't help myself.  I just want to ask.  It seems like most of the exercise is done by men. Do you fit anything else in with your five hours of exercise?  It's harder for women.  We also need to spend time cleaning, doing laundry, cooking, etc.  I feel like my days are way too short on most of the time.  Exercise has really taken a chunk out of my time.  Just sayin'..........

  • Peaches

    Make time for your self. Your family is not helpless they can help. There are ladies at my gym with 5 kids that make it work. If you take care of you then you are more able to take care of them. 

    You must put your health first.

  • Housework counts! Except for ironing, of course...

    I'm starting Rock Steady Boxing (for PwP) Tuesday. I'll let you know how it goes -- and whether it's a better workout than dusting, mopping, washing the windows, and cleaning the bathroom, ha ha! At the end of some of my housework-only days all I can do is soak my feet in hot water and snooze. On those days, I start with a short series of tai-chi moves. At night, some yoga (although I've been seen to crash out while doing the Child's Pose). 

  • Hi Becky.  I am currently going to Curves five mornings a week, yoga twice a week and riding a stationary bike about 4 or 5 times a week.  I also start most days doing stretching exercises from my last therapy session.  Tomorrow I will start the LSVT program for the next month.  Have you done that?  It seems to get great reviews.  Sometimes I just feel overwhelmed .......like PD is now in control of my life.  It's nice to hear from you.  I don't have anyone who I can talk to about all of this stuff.  I don't want family and friends to think that I am a complainer or just feeling sorry for myself so I keep it all to myself.  Thanks again for caring enough to send me your words of wisdom.  Peaches

  • Hi pPeaches.  I've heard good things about LSVT Big alo. Good lluck with that ttomorrow.   If you have a Rock Steady Boxing near you,  check it out sometime.  It's non-contact,  you do more than boxing, it's strictly for PwP's & fun. They adjust it for any level of PD.  

  • Holy Toledo! You do all that AND the housework?! :-)

    I've heard good things about LSVT and I'd love to do it. I'll have to dig around on the net to find one in San Francisco.

    You said a mouthful about having people to talk to who understand what you're talking about. That's why I value this group so much. Friends and family care, but they don't understand what we live with day to day.

  • Beckey, 

    I'm so glad you're starting Rock Steady Boxing!   You're going to love it.  You've probably read some of my posts/replies when I've talked about it.  I live in Indianapolis where it started in Oct of 2006.  I started in Jan 2007 when there were about a dozen people,  now there are over 115 affliates.    You will start seeing an improvement in approximately a month or so, especially if you give it your all.  Where do you live?  I'm so excited for you!  Let me know how it goes.  If you go to www.rocksteadyboxing. org & go to About & Testimonials, you can read mine under Debbie (purple shirt). Todd might want to check it out also.

    Keep fighting! 

  • Wow, Debbie, that was so cool to see that!! Holy Moses, Parkinson's AND breast cancer. Whew. I must say, you sure look radiant. And you can tell from the pictures there's a lot of camaraderie. I'm a little nervous about starting RSB because I'm such a klutz athletically, but what the heck, I'll try it. Thanks for the realistic timeline -- I won't be dejected if I can't get the moves right off the bat. I'm in San Francisco and I gather this is the first RSB here. I'll let you know how it goes!

  • At Rock Steady there are PwP's from in their 30's up to 93.  Some have never set foot in a gym & some are climbing mountains & running min-marathons (some from being inspired by RSB).  You will love it.  BTW, the picture was from around 2009 or 2010 timeframe so I was a lot younger then!

  • I agree.  Thinking about doing some sort of exercise every day now is a burden but does make me feel good.  I should have been exercising much more throughout life (I am not overweight though, luckily).  I saw an article on MJFox called "Puttering" which said that doing things around the house can be very helpful for PD too.  I guess consciously using BIG steps as we walk around cleaning and BIG arm movements as we dust etc. can help.

  • Maybe I had taken it too hard too fast.  I was trying to fast walk for 35 to 40 minutes every other day like I used to.   I think John and all of you are right.  I will scale it back to 20 minutes every other day and see if it makes a difference.  I was just worried at how much things seemed to progress by pushing myself.  For the record, I am 47 years old and was diagnosed last May but had symptoms for several years before then.

  • Until i started taking carbidopa levodopa i was like you tired and  unable to exercise.

    I started taking carbidopa levodopa 16 months a ago and crossfit 2 months later the carbidopa levodopa gave me the relief of Pd and allowed me to start Crossfit.

    Now the two get me through the day. If you have no other problems with your health then  you are under exercising.  A hour of kick your ass exercise every day or more is what you need to work up to.  Fast walking may help your endurance but does nothing to help your core muscles which are the most important ones.

    There is no easy road it is all up hill at first then you level out. 

    Set your goal and go for it don't stop. I read about what a one time navy seal said when your mind says your done you still have 40% left. So push and you will be rewarded.

    If you don't know what a navy seal is they are the bad ass of the bad ass.

    Kicking PD's ass and loving it. 

  • Well here goes, I am unable to do much I had a cervical fusion 8 yrs ago when I had a tremor and felt a pea sized "rock" under my left shoulder blade the tremor was in my left arm...so they x-rayed it...I found out surgery was scheduled the next day and I was in the hospital for a week..the tremor never left but I was told many times by many drs it was a trapped nerve probably from the surgery so for 6 yrs the hunt began...2 yrs ago I was diagnosed with Parkinsons when my right and left tremors took over my body..so for 6 yrs I went without a diagnosis and now can't walk even in my home without a cane at least...when I go out I use a scooter because to walk is painful and dangerous...I also have 4 ruptured lumbar discs from spondylitis..I can barely take care of my personal needs but I can throw food in my crockpot thank God...My thing is I can't exercise normally so what could you recommend because I do some light lifting also hold onto my hallway bannister and sway a bit to music but that never lasts long... I am facing the chair sooner than I would like... I also can't have the surgery for my discs because I have diastolic dysfuntion I was born with a leaky heart valve so until it gets worse I can't even have a valve replacement...lol I was falling apart before I was born...I also have RA as well soooo maybe I was supposed to be like Benjamin Buttons but instead I was a cute baby instead of an old woman 

  • The old saying is i felt sorry for my self because i had no shoes until i met a man who had no feet.

    My Parkinson's is but a drop in a bucket compared to your challenges. 

    I think you should look into water exercises.  It is a great way to exercise. I don't do water because i swim like  a rock. You are almost weightless in water. It puts no strain on your joints. 

    Good luck

  • Thank you Bailey I will look into it, I live close to a YMCA, don't know why I never thought of it!!! Thank you again

  • Just remember that the group of symptoms that are called PD are part of other conditions as well.  People can have six or eight of the symptoms and still not have PD but some other disease.  I only say that because the neuro problems are so ubiquitous that they exist in a lot of conditions.  For example, I see a lot of things in my PD husband which are in our neurologically damaged grandchild and his trauma was bacterial meningitis. That being said, the symptoms themselves can come from a variety of deficits.  It could be sugar processing, lack of a necessary vitamin/mineral, damage to a neuron or cell, etc.  so, unless you know exactly what the source is you will it know exactly how to correct it.  And you will hardly ever know the source.  Your fatigue cannot be assessed by anyone here or anywhere.  You can only listen to the experiences of others, try them out and figure out what works for you.  

    In our case I can say that it took years to discover that Don's general fatigue came from the loss of Co-Q10 as a result of taking statin drug.  Then his fatigue after exercise came from lack of electrolytes, specifically potassium, leaving him acting like he had rigor mortis for hours.  All the docs could say was it was PD freezing of gait (NO) and that he just had to keep exercising(impossible, just made it worse). Later we discovered that he had reactive hypoglycemia, undiagnosed for years as the docs always called for a 3 hr glucose tolerance test.  I discovered reactive didn't get picked up on test less than 5 hrs.  Did it and by the fourth hour, he lost it...could hardly move, cognitive deficits, exhausted.  All I am saying is that what works for one doesn't always work for another with the same or similar symptom.   Here's what we do: always eats some carb/some protein/some fat about every 3-4 hrs, and exercise when you are 'covered' by fuel. Takes electrolytes  and D-ribose before exercising, sour cherry extract (LEF.org) after for muscle recovery, chromium piccolonate to regulate sugar metabolism, lots of Co-Q10, C, magnesium and a good E(PureEncapsulations). B complex and C are the stress vitamins. There is a bar developed for diabetics to supply slowly digested cornstarch so one has a steady supply of energy.  Don doesn't have diabetes but we find it helps him. Extend bars.

    Exercising for short periods but  frequently works for us. Longer stressful sessions do not. Stress is not our friend. The tandem bike works but Very difficult for vast majority of people to access anything close to it.  It is forced exercise (combination of energy from patient and machine assist  so patient can experience more movement than possible on his own).  

    Hopes this helps.  Read up on equine polysaccharide myopathy.

  • Do yourself the biggest favor  ... take as much exercise as you can possibly stand. You will feel wiped out at times, but keep going.  If you can mix it up a bit that also helps - different activities. Cycling very good. Walking, tennis, swimming, weights. It is your #1 medication. It gets easier.

  • I would concur with other responses and say that you should exercise daily and don't over stretch yourself. Work up a sweat, and keep building muscle. I am more shaky after exercise then shortly after, on the same day, I'm like a new man!  

  • Ask to see a physical therapist. Maybe you need to prepare yourself before beginning an exercise program. We are all different. Do not judge yourself by others. Just start from where YOU are. I use to ride a Ninja motorcycle. The rule of riding was, do  not try to keep up, "Ride your own ride". I found this to be true in life as well as motorcycle riding. Always be safe.   

  • I was doing quite a lot of exercise at the age of 67 before Parkinson's diagnosis last year - sprint and olympic distance triathlons. Now I have exactly the same issue as Todd - exercise seems to make the medication less effective a day or two later. But I will continue to do what I can because I love it...

    Three points though:

    1. I find swimming front crawl hard as I have less strength in my arms - I go slower and swallow a lot of water.

    2. Is cycling really safe for us PD sufferers? My sense of balance is not what it was. I still cycle but I try to keep off busy roads. You don't need vehicles coming past you millimetres away when you have loss of balance.

    3. I'm still running although that's rather a grand way to describe my Parkinsonian jog/shuffle. It does result in me getting through three pairs of running shoes a year because my shuffle wears away the outer sole. Walking is the best but you need more spare time.

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