Parkinson's Movement
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Excerise and fatigue

I walk 2 km a day for exercise. I used to be a road cyclist and still competed in races at age 50. Since my PD my 2km walk every morning makes my legs feel week and stiff in the afternoon almost as tired as after a 100km cycle race. when I was healthy you get racing legs that doesn't seem to fatigue but it seem that now my legs doesn't want to adapt to the distance. Has anybody experienced the same

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Yes, the only thing I can suggest is doing exercises every other day. Right now I'm doing the big and loud program as a therapy, this is my first time ever. I am exhausted. You do it 4 times a week for 4 weeks and then you are supposed to do it twice a day on the days that you don't do it. I don't think I get a chance to recover. However I have not been doing it on the days off.

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Yes, I am now down to walking with walker so I do not fall half a mile at a time and doing it 3 to 4 times a day but knees protest so I am also using a stationary bike, especially on rainy days.

Muscles seem to take much longer to rebuild after strenuous workouts. More pain but no gain. I also was athletic all my life and trained hard, weights , stairs, distance, heavy bag . This is more difficult than anything I ever did. We must keep going , we must stay on our feet.

"I hated every minute of training, but I said, ‘Don’t quit. Suffer now and live the rest of your life as a champion.'" Muhammad Ali

OR maybe just live the rest of your life , keep going , You can do this.

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Thanks for your story - I will just keep on walking

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Why did you stop cycling I still cycle winter 60+ miles per week and summer 100+ just curious

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Balancing problems and I didn't want to have a dyskinesia episode 50 miles from home. The diagnosis initially was a shock - so emotional reasons as well

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Though I do understand the emotional reasons

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Why don't you do a loop close to home say 30 miles but stay within 10 miles from home I live in the peak District so I am able to do long loops and still get my fix although quite hilly

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Thanks friend I'm going to give it a try !!

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Let me no how you go on

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Will let you know, thanks

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Zadok,

Are you on meds? I, too, live in a beautiful place, but I am unable to walk for long distances because my dyskinesia turns my foot and leg awkwardly. Instead I ride an exercise bike every other day for 30 minutes at 95rpm. I take a slightly higher dose of meds to accomplish this and I only do it every other day because the whole production of riding, cooling down and showering (I struggle with dyskinesia so the shower is where I feel most at risk) takes a big chunk of my day. Maybe you can increase your meds or vary your exercise?

Julie

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Thanks for your advice. I think I need to up my dosage of levodopa - although a radical increase in Carbilev gives me dyskinesia. To shower and shave is also like a mountain infront of me because of the shaking. So I do this every second day

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I cut my 10/100 carbidopa/levodopa pills in half and only take the whole pill to exercise or when I am going out. Can you try small doses more frequently?

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That's what I'm doing and it works ok I take 4 tablets a day but in halves every 3 hours

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If you're taking 25/100, 1/2 (50mg levodopa) is a really small dose to last three hours. Have you spoken to your neurologist? The fatigue and weakness you are feeling may be the "wearing off" phase of your med cycle. For me, that is worse than being "off."

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I agree, I will speak to him I came to this dosage after suffering dyskinesia from 4 25/250 per day

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Yes I agree I take an extra whole tablet when I go out most of the time it works sometimes it doesnt

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Physio advice is now to do short (30sec) bursts of high intensity (80% of heart rate) exercise three times a day at least three days a week for maximum benefit of exercise. Maybe try that and it won't fatigue you so much? Even just punching your arms in the air constantly/quickly for a timed half a minute sure gets you puffing and blood pumping to the brain

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Thanks for the advice - will do. What exercise can O do to strengthen my shaking hands and the grip I've been squeezing the ball

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My left hand sometimes quivers when I start fast walks, but it usually disipates after the first 1/8 mile.

Also I ususally do 2 to 3 reps of 50 hand spring flexes (simultaneously with both hands) while watching TV in the evening. Goes a long way in reducing this nuisance.

My micrographia also dissipates considerably immediately following fast walk and hand spring sessions.

Hope this helps...

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Why have you stopped riding the bike? It’sbeen proven to be one of the best exercises for PD.As an ex racing cyclist you will find it a lot easier than someone who’s never cycled.If you can’t get out on the road set the turbo up I promise you will feel the benefit ,for most folk the shaking actually stops whilst on the bike and for a while after you stop. You can just rideable a comfortable pace for a time or try HIIT.

Whatever you do don’t let PD dictate what you can and can’t do,Hes your uninvited guest and you have to keep him in his place.Remember he’s living with you you are not living with him.!

invigoratept.com/blog/cycli...

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Good attitude, Bazillion!

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Totally agree the best option better than any drug

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Find pickle ball -I play for two to three hours 5-7 days a week and it seems to work all my muscles and great cardio

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I will give it a try thanks

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Ok I will give it try. My son in law is a Springbok track cyclist - I will go on the trainer. I stopped because I don't want to cycle alone and be 70km away from home and you suffer some symptoms

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I have just started riding an e-bike after cycling most of my life. Great to be out and about. I have to be careful about my balance but they are pretty stable. I can challenge myself with the battery off but have no worries about getting home! Expensive but worth the money imo. Agree with everyone else that one day on and one day off is best.

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That's the way to do it - Yes man - thanks

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well zadok im 71 i fast walk about 10 kl every day 7 days a week plus all sorts of exercises on my way around the park here.i have been doing it for years i use massage machines they are very good i even have one in my bed i turn it on when i go to bed it helps me have a good night sleep.i had a race against my grand daughter a few days ago i beat her and shes fast.its about pushing the envelope i even have abs believe it,im just like the rest of you i get the pain and shakes as well but when i get out of bed i jump out..i have no trouble shaving every morning..i wash my back in the shower every morning with both arms.its about pushing your self every day..just tell your self every morning i can do this.try standing on one leg for 10 seconds..i can do it for 20seconds on each leg.its all about never stopping.so many things you can do just never stop.hope this helps you..regards.

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Hi there. Congratulations on your excellent condition. I just visited your homepage and saw you had stemm cell treatment in China. Can you give us info on that? How long ago, stemm cells from who, improvement , costs, etc. Tks.

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hi aussie im from perth were are you from.

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Hi. I'm also in Perth. Who is your neuro? I see Rick Snell.

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hi astra well the last guy i saw i forget his name he resides in that hospital in leederville cambridge st 400 dollars for 20 mins and he said theres nothing i can do..so i do it all my self now i did the trip to beijing 25.000 dollars..it did help me but it only helps for awhile .so i every thing i do comes from health unlocked.and my exercise every day.so tell me a bit about yourself astra,i live in ballajura,

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Hi. My guys in that practise too but there is also another neuro there, tim something. I live in Floreat and I'm 54, diagnosed 2 years ago. You get a fair bit back on Medicare but last time it was $200 for less than 5 mins!

I'm finding mannitol working for me so far. That and NAC and a few other things. Also azilect and madapor. Stem cells in China sounds radical. How has it helped?

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hi astra well if you want to see me or talk to me on skype ill tell u every thing you might want to know about every thing.including madopar and azilect.or my phone number is 0478810069..im john..

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good afternoon aussie how are you today,were in canada do you live as i used to live in calgary but that was back in the late sixtys,..i worked in safeways as a butcher,,anyway about the trip to beijing well for me it worked for awhile and my family noticed the differents,so im glad i done it,its called the wu medical center they are on skype if you want to talk to them,if you decide to go there let me know and ill explain every thing to you,regards john.

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Thanks for the advice and inspiration. I will work on something to do that I can't do. The best medicine for a movement disorder is movement

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Perhaps you are doing too much too quickly. Try to walk for 10 minutes, as fast as you can every SECOND DAY. That gives your muscles time to RECOVER. After every 2 weeks, add five minutes onto the time until you are eventually walking for one hour every second day. You will not overdo it that way. If you cannot manage 10 minutes to begin with, then reduce that to 5 minutes and only add on 2 or 3 minutes every second week.

Don't be impatient! It may take time but you will be getting better, not worse.

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Excellent advice, fellow South African!

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Hi M1tz1. Where did you live before escaping?

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John, I have lived in RSA most of my life. Was born in Durban and have been in Jhb since 1959 when I returned from a two-year stint in the UK. Battling with intentional tremor and night -tremors but I don't have PD. It was my husband who had PD before he died in Jan. But, just in case, I'm trying to take your advice and step up the exercise. Trouble is I have balance problems because I had no time to work out when I was caring for my husband for a very long time. Difficult to walk fast!!

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Hi M1tz1 I found that I could hold my hand still if I concentrated very carefully on it. I learned to pain after I was diagnosed and was able to paint very intricate pictures. It took a lot of time but it worked.

If you contact me on reverseparkinsons.net I will send it to you. I don't know how to print it here.

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Many, many thanks for your kindness, John. I have contacted you on that link. I'm really grateful.

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It has been nice talking to you Mitzi. I hope I will be able to help you if at all possible.

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I wish I could use your fast-walking strategy, John, but during Ole's illness I had no opportunities for exercise. Now I find I can't walk quickly; moreover I can't steer a steady course. When I walk, I must look as if I'm drunk! Trying to do balance exercises to get that right. :-)

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Hi Mitzi. You have not mastered the 'Conscious Control' of your movement yet. Have you read my article on how to teach someone to walk properly?

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Where will I find that? In the HU archives or your website, John?

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Sorry to have troubled you, John. Found it on YouTube. Very impressed. I live alone but will do the parts of your protocol that don't require assistance. Then will find someone to help me with the rest. Thank you so much.

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Hi Mitzi. Go to my website - reverseparkinsons.net and contact me from there.

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Ok thanks - I think we compare what we were capable of

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Z-

I am a believer in using SCIENCE to help my situation. I experienced the exact same symptom you describe and no longer have that problem. This is not about anecdotes from other patients. It IS about what science has shown us about exercise and Parkinson's.

First there is an enormous amount of conflicting research on exercise and Parkinson's, because the way studies were developed, executed, and measured were not ideal hence the results were inconclusive . . . that is until recently.

THE MOST RECENT RESEARCH ON EXERCISE AND PD IS CONCLUSIVE. RUNNING ON A TREADMILL FOR 30 MINUTES 4-5 TIMES A WEEK AT 80% MAX HEART RATE STOPS THE PROGRESSION OF PD.

Effect of High-Intensity Treadmill Exercise on Motor Symptoms in Patients With De Novo Parkinson Disease - A Phase 2 Randomized Clinical Trial

jamanetwork.com/journals/ja...

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Even more importantly animal research shows that exercise at the rate studied reduces alpha-synuclein.

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Running wheel exercise reduces α-synuclein aggregation and improves motor and cognitive function in a transgenic mouse model of Parkinson's disease

journals.plos.org/plosone/a...

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The latest theory on PD is that alpha-synuclein is the one and only common cause that is shared by ALL PD patients so MAYBE just MAYBE attacking alpha-synuclein is the BEST possible way to slow PD progression.

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Researchers Gain Better Insight Into Alpha-Synuclein’s Role in Parkinson’s Disease

parkinsonsnewstoday.com/201...

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Furthermore, it is my opinion that with an illness like PD one must attack the disease from as many angles as possible and the latest research in other neurological disorders is proving this to be an effective way to treat such illnesses.

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Reversal of cognitive decline: A novel therapeutic program

ncbi.nlm.nih.gov/pmc/articl...

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In that study patients with Alzheimers actually reversed their symptoms and were able to return to work. The important element for patients like us is that those patients took unproven supplements TOGETHER. They took things like CoQ10, melatonin, vitamin D, etc ALONG with diet and exercise and TOGETHER the therapy reversed their disease. Even more importantly is the fact that many of the individual supplements had undergone double blind placebo controlled trials which failed, but somehow when put TOGETHER the supplements plus lifestyle changes seemed to have a benefit. The trouble is scientists HATE having more than one variable at a time so this type of research is VERY slow to catch on.

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I could write a book about my ideas, but I will stop here and post a few links below. I hope you will take the time to actually read thru them thoroughly in the coming days because I believe you CAN stop your legs from feeling stiff, but to do so you need to find a combination of therapies including supplements that work for you.

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To begin with here is my story. I do not have PD but rather a disease called SCA1 but just like PD the underlying cause is a bad protein and the symptoms are almost identical. The major difference is that SCA1 is ALWAYS fatal and people with my disease level normally are using a walker by my age so I must be doing something right:

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My SCA1 progression has stopped. My alternative therapy for SCA1

healthunlocked.com/ataxia-u...

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Lastly, I'm not sure if you know this, but if you click on a persons name you will see their profile and all their posts and replies. I have written extensively on this site and provided an enormous amount of scientific research to back up my beliefs and I only hope you will take the time to read through them all, as again, I feel it could potentially be of benefit to your situation. I would also suggest you search for posts by Silvestrov as he, too, has compiled a great deal of research on supplements that have potential to help people with PD, and he actually has PD, but is managing his symptoms with his routine as well.

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All the best,

Joe in NY

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Great Post!

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I'm still pre-PD drugs. Owe a lot to John Pepper's sharing.

What works for me re exercise:

1 mi fast walk 6 days per week

Stout resistance training and rowing, with hot tub finish every other day

Deep tissue massage 2 x month

Daily Magnesium Glycinate to avoid cramps

Sweet pickle juice on my night table just in case. Used when I sense a cramp might be coming. 1 tsp on my tongue averts the cramp

Hope this helps...

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I have found that a recumbent trike is the best overall. It allows me to extend my self without the fear of hypotension when stopping, and safely crawl up steep grades that would be impossible on a bike. Plus the “outdoor magic” variable is the best antidepressant known to mankind or mykind.... particularly spring in western Oregon!

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Yeah... I used to join 3km marathons and the latest was 2yearsago. Now, walking for awhile wears me out so quickly

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I feel the fatigue in the afternoon although I walk in the morning

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