PD and exercise - first hand experience

[Astronomer90]

I read a lot about exercise benefits for PD. I am sharing my experience. I was diagnosed with PD about 4 years ago. My main symptoms over years are right hand tremors and REM issues which I have on and off for many years. I have been a good runner for many years even before PD diagnosis. After my PD diagnosis, I have been running for 4-5 days for 5-7 KM. There is no benefit to hand tremors. The tremors have been progressing, so I wasn't sure if exercise helping at all. Lately, I had major dental surgery and bone grafting. Doctor asked me not to exercise for a few weeks. I stopped running, and what I experienced was unimaginable. After one and half week of stopping exercise I had following symptoms 1. Brain fog: out of blue I had brain fog issues.

2. Sleep issues: I was sleeping like a baby for 8 h a night. But after stopping exercise, I couldn't sleep more than two to three hours.

3. Dizziness: I had dizziness issues which I had never before. This could be due to antibiotics.

4. Constipation: suddenly I had constipation issues which I never had before.

5. Hypertension; I had dizziness when getting up which I didn't I have before.

6. Balance issues: I had whole body tremors and feels like I am going to fell down.

7. Tremors: Hand tremors progressed .

I started exercising after 3 weeks and I see following improvements

1. Brain fog: it is gone

2. Sleep issues: It is gone. I am sleeping like a baby again.

3. Dizziness: it is gone.

4. Constipation: it is back to normal

5. Hypertension : issue of hypertension is gone

6. No balance issues

7. Tremors: still same. No improvement

It was scary experience. On one hand I am happy that exercise is helping that much but on other hand it is scary that if I can't do exercise, then picture is doomed for me.

Nonetheless, exercise is not helping with tremors for some reasons. Please share your experiences.

Just wanted to share my experiences with exercise as number of studies published.

[ShakingInMyBoots1]

have you tried lifting weights? Running never helps my tremor weights do

[Astronomer90 in reply to ShakingInMyBoots1]

No, I haven't tried weights. I will try that.

[Jess123dog]

Hi, do you take meds at all Astronomer90?

[Astronomer90 in reply to Jess123dog]

I don't take it regularly. I take levedopa and propannol when i have to go out or sometimes to the office. I mostly work from home. Levedopa and propannol reduces my tremors temporarily.

[Jess123dog in reply to Astronomer90]

Thanks for that. Wow you are doing well then. So glad to hear this positive about exercise.

[Weng888]

Thank you for sharing your personal story about how exercise has made a difference in your battle against Parkinson’s. I can relate, as my dominant symptom—like yours—is hand tremor.

In my research, I’ve come across three potential solutions for reducing tremors, though I haven’t tried any yet:

1. High doses of B1

2. Focused Ultrasound Therapy – Expensive but has the potential to stop tremors almost immediately.

3. Tass Gloves – A promising development from Stanford University, though not yet available on the market. My best guess is that they might be released by 2026.

You may want to look them up for more details.

[Astronomer90 in reply to Weng888]

Thanks for sharing. I just built buzzboard similar to Tass gloves as shown in videos as diy project. I will see if it helps in a few weeks.

[Jeagar815 in reply to Weng888]

My presentation is akinetic, but I suggest that you try hot yoga. It may help with tremor. I have found it to be very helpful with mood, balance and sleep quality.

[Annieartist]

Ive had less dramatic but none the less devastating increase in symptoms because building w reoduced my exerciserks and my need to project manage them has seriously reduced my exercise and increased my stress levels - my balance and my tremor both much worse.

I think exercising the arms is important and though Ive been doing rebound and walking as my arms get weaker the tremor gets worse. Has anyone else noticed this? Sort of makes sense

[DogsWoode]

Thank you for sharing this. Very interesting. I might also suggest that illness and antibiotics both seem to exacerbate symptoms. I would suggest this may have been part of your tough experience. When you started back to exercise the antibiotucs would have been out of your system and your body back on the road to previous level of health. No doubt though that exercise is a terrific antidote for you.

[Jeagar815 in reply to DogsWoode]

I have never been floored by a serious illness. I have been diagnosed for 8 years. I have had similar, but less intense experiences when I have ended up exercising less. Besides running, any intense exercise is helpful. Hot yoga I find particularly beneficial. My balance is better than normal, due, I believe, to hot yoga, as measured by a balance machine by a physical therapist at UCSD.

[DogsWoode in reply to Jeagar815]

I can imagine hot yoga to be really beneficial for sure. Good for you to keep that up. I appreciate your thoughts on this. And good to hear illness hasn't been a factor for you. What about antibiotics?

[Nuthatcher]

That is really interesting! Thank you for sharing this! I have been trying some different things with my meditation and exercise as well. When (if) I get some more clarity on it I will post.

[HugoRipanykhazov]

Could you please give some indication of what exactly you think this might indicate? That if we dont take the course of sinemet, our symptoms can be very much exacerbated? Are there lessons here for those of us who do do the course for those symptoms? (as opposed to sinemet-for-occasional-use)

Have you concluded that your symptoms can be ameliorated if you take sinemet more regularly?

[Astronomer90 in reply to HugoRipanykhazov]

I tried Sinamet three times a day but it brings more symptoms in off time. I thought that I don't have any other symptoms other than hand tremors until I had to stop exercising. So I wasn't taking Sinamet regularly.

[Allyn]

I have a little "exercycle" that I use every day as I'm sitting at my computer. I got the idea 11 years ago when I read that someone with PD went on a cycling journey on the back of a two seat bike, so they were pedaling, but not alone. At the end of the day (8 hours of "assisted" cycling) they noticed significant improvement in their hands. Especially being able to write better. This exercycle is powered - it moves at almost 90 cycles a minute, which is what we need. It helps me. I also swim and I do take mucuna and C/L (1/2 tab with mucuna) about 3 times a day. All seems to help my left hand tremor.

[DogsWoode in reply to Allyn]

Brilliant idea!!

[DogsWoode in reply to DogsWoode]

Can you tell me please Allyn what mucuna and dosage you take. I've not tried but am very interested.

[Allyn in reply to DogsWoode]

I use Himalaya Organic and I take 6 caplets a day, but this is very individualized. you just need to start and increase until it seems to be helping you.

[DogsWoode in reply to Allyn]

Thank you Allyn. Yes I understand v individualized. Needs to be titrated carefully. Just learning about it more fully now. In preparation for PD progression. Can I ask dose per caplet pls. Did this allow you to reduce your C/L? Tks for your help.

[Jeagar815]

I was diagnosed 8 years ago at age 47. I have an akinetic presentation, meaning that I have never had resting tremor, my key symptom is bradykinesia. I call Parkinson’s Medusa’s glance disease. I have run 15 marathons and regularly practice hot yoga. Whenever I am unable to do either running or yoga I have mood, sleep, brain fog issues, more fluctuations in medication effectiveness, more medication side effects, less mobility and begin to have some balance issues. I injured my knee and now need to use an elliptical machine. It is an acceptable alternative. Doing both regularly, I have achieved slow progression, minimal progression on the left side. Yoga seems to be especially beneficial for maintaining balance, good sleep and good mood. My balance confuses my neurologist. I have better than normal balance. I highly recommend adding hot yoga to your exercise routine. I agree, intense exercise is crucial. If you are fatigued from an off period, do it anyway. Do as much as you can as fast as you safely can. Among other things, I have found that if you force yourself to exercise during an off period, it can reduce the off period and allow you to move at normal speed.

[stlewy]

Hey, Astronomer90. I'm a runner, too, a combo runner, a speed walker, and a sprinter. I also mix in weights. Both help, but running helps reduce my symptoms more. My tremors are a bit worse immediately after running, but they calm down after 10 minutes, and generally, the tremors are calmer but not completely gone. When I start running, my legs feel heavy and slow, so I begin with speed walking, taking the heavy leg feeling away. The relief is immediate (short-term). I am not seeing long-term relief like reversal of symptoms (at least not yet). Something new I am trying is speed walking/jogging with my DIY PD Dr. Tass gloves. So far, I'm getting much better short-term results with symptom relief.

[HugoRipanykhazov]

If you are having off periods when taking sinemet three times a day, isn't that an indication that you need to move to a stronger dose, - not that you should stop taking it?

[Kenekekiane]

I was diagnosed 5 yrs ago. Also a former runner, walker, home gym, etc. I'm 84, still ride a recumbent exercise bike, climbing stairs in home many times. Exercise makes tremors worse and doesn't help any of the same symptoms you complain of. I have not had good luck with Sinamet or Rytary. I also live in a bad place for Neurological care. It gets pretty discouraging.

[gaga1958]

Have you heard about the device that is worn sort of like a watch, called a Beech Band? It is based on vibration, I believe. It is out of the UK, so not available to me here in the states yet. Not sure if/when it is available in Canada. But I've seen the guy who "invented" it on different podcasts. He has PD as well; he takes it on and off his arm to show how his voice is affected. I'm looking forward to trying it out as I have horrible tremors in my feet which makes it harder to drive a car. I have in my hands as well but much worse in the feet. Look him up on FaceBook or beechband.com Maybe you can find out when its coming to your country.

[DogsWoode in reply to gaga1958]

I agree it looks very promising and the fellow devising it us a class act.

[healthnut01]

Perhaps it's not the Parkinson's. Did you know the MRNA jab stuff is now in dental anesthesia? This is pretty much hidden from us but I read of a dentist that sent out a sample of his anesthetics and sure enough it was in there.

[Parkcure]

HI , My name is Eleni.

I was diagnosed with PD last year June. . My Neurologist started me on Carbilev 25/100mg

3 times a day , Which is working for me. But with my recent follow up consultation he added

Azilect 1mg. Why? I am sensitive to a lot of medication and do not want to overload my body

[gaga1958 in reply to Parkcure]

did you ask your dr?

[rodov]

I walk a mile every morning with my dogs (jog on/off) then strength training after in home gym. If I miss the morning walk I get brain fog and bad fatigue too. Sleep is a constant issue for me no matter what I exercise I do.

My tremors are limited to my left arm but only occur when I attempt precise movements. I used to play guitar but noticed difficulty with left hand about 5 years which lead to my PD diagnosis about 4 years ago. My left arm is stiff and sometime feels swollen and even has a darker pigment color than my right arm until I exercise it. I haven’t read any experiences like this.

I have mild balance issues, no bowel issues or hypertension. But do have mild speech and swallowing issues which has caused me to avoid many social situations outside family.

[cgreg in reply to rodov]

I am affected on the right side and my right foot looks darker, is a lot stiffer, and is more swollen than my left.

[rodov in reply to cgreg]

that sounds exactly how my left side is, both my left leg and left arm get stiff and swollen with darker pigment that the right side. My leg is not as bad because I exercise it more from walking all day, I don’t strength train my left arm as much as I walk.

skip this next part if you don’t want read an anti-for profit healthcare rant…

I was disappointed to hear from my neurologist that ‘it wasn’t a symptom of PD’ and had no real explanation when I told them I never had the left arm issue before being diagnosed! A good neurologist is hard to find in the US where the for profit healthcare system controls protocols and I believe ultimately interfere with patient - doctor interactions and interventions. With seemingly infinite variation in PD symptoms among patients, the application of a few outdated protocols covered by insurance leaves us all desperately searching forums like this for solutions we not getting from our ‘in network’ healthcare providers whom are hesitant to prescribe any treatment that more often than not challenged by the insurance claim rejection algorithms. (Had to get that out.)

[6daniparky]

Thank you: you exactly described the condition of my husband when he cant't exercise.