Has anyone who cycles found that they have reduced fatigue, brain fog, balance and walking problems. I had deep brain stim surgery 6 months ago. Within thee months I had put on 18ks, was fatigued to the point of not being able to shop, prepare a meal, do even light housework and my fine motor ability was non existent. I was shuffling along and my balance was poor. I looked as if I was permanently drunk.
I recently bought an adult trike. Ifound that I couldn't walk but that i could ride. Over the last couple of days i have pushed myself to ride a little further and faster. Today i am feeling more alert, can walk almost normally, have heaps more energy and generally feel better than I have in months. I have read a little about cycling and Parkinsons but am keen to hear of other people's experiences.
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BARBMarlow
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Exercise in any form is most likely going to help when i cycle i feel like i don't have pd. We also need to do core exercises to help with every day chores. I also do Crossfit for all over body improvement .
I posted a few days ago about cycling and Parkinsons. I I have always enjoyed cycling. I can get on my bike, ride it, but am unable to get off I thought a trike may be the answer and have been looking for a suitable one. I would need a folding bike as I do not want to ride on roads. I would be grateful for any advice you can give me on what I need to look for in a trike. I am fairly mobile. but my confidence has taken a knock. Would be grateful for any tips you can give me.
BARBmarlow, congratulations on your TRIiKE, clearly you find this activity empowering and beneficial. I find you an important example. Most of us have heard exercise is important every day. And in addition some form more intense exercise even better.
Y ou described in your post, several mobility challenges you were experiencing before y ou got your TRIKE. Why did yo u chose a TRIKE? Why not choose a ten speed racing bike? I will take the liberty of assuming your mobility status prevents your safe operation of such a bike, the challenge which you have overcome is figuring out what kind of ADAPTED Exercises is going to work for you. Yo u have empowered yourself to make a difference in y our symptoms.
I started from a spot further back....fortunately I was able to procure a Theracycle, which has motorized assistance in pedaling. Exercising on it keeps me going.
Like BARBmarlow's example. For those of us challenged by our symptoms, join BARBmarlow, , DISCOVER AN ADAPTION that works for you.
I am living in Amsterdam and I do all my moving around on a trike. Not on a bike anymore because I broke my leg and my arm 4 times in the last couple of years. When I go to other places I put my trike on the train. You get assistance from the railway company here.
I never had a drivers licence in my life nor a car which is not abnormal here. If it makes that my PD is less bad as it is now I donot know. I observe that I have the inclination to use my left leg more than my right leg. So I try to concentrate on the movement and try to speed up with my right leg. I really have to force myself to cycle a little faster. I used to have a speed that was much faster
I have in the past dragged myself half-dead to a spinning class - not that I could do any of the stuff the younger people could do - but I certainly felt energised afterwards. I am just getting round to going to the local gymn and your post has stiffened my resolve to go regularly.
Since my license was revoked I have been cycling nearly every day it is strange because my walking is v bad I tend to freeze especially in times of tress's or busy places but i ride fine although i too have problem getting of the bike but i usually manage it OK ,if i do not get my license back I think I will get an electric bike because anything over 5 miles I get pretty exhausted it would be interesting to find out if anyone else has gone down this route. I find that the bike is a godsend and I can keep my independence.
I never had a car in my life which is not abnormal in Holland. Since I broke too much on a bike I have got a trike an electrical one. I move around with it in the city of Amsterdam and I am quite satisfied with it
I don't know BARBmarlow's answer to this questions, but I believe that it's not unusual to still be on some medication after DBS, but it would hopefully reduce.
Several of us use a stationary bicycle. I have found that I need at least an hour a day of > 120 beats per minute heart rate to see improvement. At 30 minutes per day, it appears that I get worse. At 1 hour per day I start getting better in every way. My impression is that if I were able to do 2 hours per day, my PD symptoms would disappear and not return. No exercise leads to a decline in everyway.
Switching from 30 minutes to 1 hour has immediate benefits such as better mood and more energy, but then it is easy to digress back to zero exercise because skipping a day has no noticeable detriment. Continuing with 1 hour per day for more than a few days becomes boring and I do not notice I feel better afterwards, but that is because I feel better BEFORE the exercise already because of the previous days' exercise. After about 1 month of 1 hour per day, I suddenly realize I had not thought about PD for the past few days because no symptoms were bothering me.
Exercise increases AMPK which helps break down proteins like a-Syn. Exercise also increases heat shock proteins that carry the broken pieces of the a-Syn out of the cell.
Nilotinib also increases AMPK and is almost assuredly how it appears to reverse symptoms. In other words, nilotinib may be a way to get the benefits of exercise (in regards to PD) without exercising, which is crucial in severe cases.
AMPK is "something" in the cell. That's what I need to know about it, that it is "something" in the cell that helps PD and can be increased by doing certain things. More specifically, it's an enzyme the body creates and uses for various things. Like all enzymes, what it does is very complicated and usually not well understood. But for the purposes of PD, we want more of it in order to break down the "PD toxin" so that the toxin can be removed from our neurons. The "PD toxin" is badly-form a-Syn protein, which is another "something" our neurons use when it is not badly-formed. "Badly-formed" means that when the protein is taking shape, it does not fold correctly. Proteins are like paper origami: they have to fold a certain way to get the right result. When it folds correctly, it works correctly. When it folds in the wrong way, it does not do its job. But the real problem is that it also becomes too rigid for the cell to break it apart and remove it from the cell. There was a previous post I made that looks at every compound that can directly or indirectly break mis-folded a-Syn apart. There are many of them, but most of them do not appear to reach the brain.
Nilotinib is a pharmaceutical normally used in leukemia that was shown in mice to effectively break mis-formed a-Syn apart by increasing AMPK. Unlike most other compounds, it reaches the brain. It's already approved for use in leukemia so maybe doctors can prescribe it off-label for PD. It's very expensive, but by eating with food and grapefruit, a dose can be tripled. Where leukemia patients have to pay $10,000 a month, a PD patient needs about 1/4 and by taking only 1/3 of that due to taking with food and grapfruit (1/12 leukemia costs) and buy from a different country (1/3 the cost) can get the cost down to $250 a month.
There is some excitement with nilotinib because the people who hold a patent on it got 2 patients to finance a safety trial (phase 1) in I think 12 patients. They and the patients are reporting amazing results, but they have not published anything. This is a suspicious. Normally a research will not say anything until it is published, and even then nothing is usually said if it is just a safety trial. I hope the 2 patients financing the trial are not now looking for a profit from it, especially because the study was not blinded, because they might be the 2 patients are quoted in news reports of it being miraculous and they know they got the treatment and not a placebo.
GM1 has better research and it reversed PD symptoms a little bit and the PD progression stopped for as long as the 38 patents took it. But many PD patients need to be demanding it before anyone can make a profit from it, so no one is making it. It can't be patented, so pharmaceuticals are not really interested, especially because it is animal-derived.
Actually, I have some nilotinib now. Unfortunately, my case is not severe, so I doubt I will be able to praise it. Even if it does not help, it may be because my particular case is an old mercury poisoning coming to light.
You might want to read my book: If I Can Climb Mt. Kilimanjaro, Why Can't I Brush My Teeth? Courage, Tenacity and Love Meet Parkinson's Disease. PD entered my life 10 years ago and this is the story of how I have been able to substantially mitigate the effects of the disease primarily through cycling at high cadence (80-90 rpm) for at lease an hour generally 5 days/week. I went from being essentially as you describe yourself (in year one of diagnosis) to standing on top of Mt. Kilimanjaro at age 65 and multitudes of other things in between. (I also lost 20 lbs. and am more fit and energetic than I was for years. Cycling won't cure PD, but it sure makes life a heck of a lot better. At age 70, I'm looking forward to ski season and snowshoeing in the mountains. You can use your trike. The important thing is to keep your cadence. Unfortunately, research has shown that the Theracycle does not produce the results that either solo or tandem cycling does. In the winter I put my road bike on a trainer in the basement so there are no issues related to balance or weather. As a matter of fact, when I finish this email, I'm headed to the basement with my music on my IPod and my book on my Kindle.
All the best to you. It sounds like you're making good choices.
As others have said, all exercise is generally good. Activities that have a forced repetition, like a treadmill or a tandem bike seem to have additional benefit in "synching up" the motor control system.
I cycle with my partner who has had Pd for 9 years once a week also try playing tennis and walking we made an obstacle course once that was good. All excercise is much better than sitting on the sofa. even in the rain
I also have had DBS a year ago this week but I immediately felt dramatic improvements. About 5 months ago I purchased a recumbent trike and found it to help me both mentally and physically. In the last month I've been unable to ride it because of the weather. I'm trying to find better clothing because I'm not as good as I was when using it daily.
I also had DBS 8 years ago. But on the 2 St that they told me I would! Did lose it again. I started using my bike 3-4 years ago and is a great ex cerise..like you can cycle when I can't walk! I would say...keep at it...it can't do us any harm 😊
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