Exercise & PD

[forest1]

I have recently been walking regularly over the last month and my gait has improved massively. Diagnosed 14 years. I have also read numerous posts/tweets/blogs and research regarding the benefits of exercise and PD. Some people claim to have reversed the symptoms or at least plateaued and are quite well-known in the PD community. My question is are they actually reversing PD? I.e. are there cases of DAT scans showing an improvement in dopamine? Have they actually had PD in the first place? Does it mean they improve on non-motor symptoms? Some take less medication due to exercise - so dopamine must increase naturally to enable function? I shall keep on walking but still pondering what happens! Any thoughts?

[JayPwP]

Thank you. Please share your exact protocol. How fast? How long? Frequency? Medication? Supplements? Diet? Anything else?

[forest1 in reply to JayPwP]

JayPwP - thanks for answering ,3.5 miles 4x a week. takes just over an an hour and a half 'ish (!). No supplements. Medication - Sinemet 25/100, Requip 6mg,rasagaline,Amantadine 400mg . But that's me, interested about those who have see large sustained changes too.

[JayPwP in reply to forest1]

Thank you for sharing.

JohnPepper is another walker

[cgreg]

The daily 1 hour of exercise has improved my symptoms so much that I have reduced my meds from 1/2 C/L (25/100)- 3X daily down to 1/8 C/L (25/100) 3-4X daily over the course of two years. When I could not exercise when I was recovering from cataract surgery, my symptoms became worse. My MDS doctor said his other patients also reported a deterioration of their PD symptoms when they were unable to exercise.

[stocktiki in reply to cgreg]

Thank you. What is your exercise protocol? Walking or something else?

[cgreg in reply to stocktiki]

Hi Stocktiki. I try to do a variety of exercises including strength training, cardio-vascular conditioning, balance training exercises, and occasionally walking.

[JayPwP in reply to cgreg]

Thank you. Please share your exact protocol. How fast? How long? Frequency? Medication? Supplements? Diet? Anything else?

This is a duplication... I know... I know 😆😆😆

[cgreg in reply to JayPwP]

Hi Jay. Exercise Protocol: a variety of exercises including strength training, cardio-vascular conditioning, balance training exercises, and occasionally walking. How Long: at least 1 hour. Frequency: daily. Medication: 1/8 C/L (25/100) 3-4X daily plus 1/2 of Pramipexole 0.25 at bedtime for my RLS. Supplements: None. Diet: Balanced. Anything Else: A regular dose of Hopamine (e.g. hoping that those darn gloves from Stanford will be available soon).

[Axter in reply to cgreg]

what mean "1/8 "?

[cgreg in reply to Axter]

Hi Axter. It means that I divide ONE tablet of C/L (25/100) into EIGHT pieces and I take one piece at a time, 3 - 4 X daily.

[Gallowglass in reply to cgreg]

Can’t believe it works with such a low dosage! How did you get to that dosage?

[cgreg in reply to Gallowglass]

Hi Gallowglass. My MDS doctor attributes it to exercise and I tend to agree with him because I can feel the beneficial impact when I am able to exercise regularly and also feel the worsening symptoms when I fail to exercise for an extended period. I started with1/2 CL dose two years ago and then reduced it to 1/4 last year and then finally to 1/8 a few months ago. Each time that I tried to reduce the dose, I kept detailed notes of my symptoms over two weeks in order to be sure that I should move to a reduced dosage.

[Bunny622023 in reply to cgreg]

That's great. I so believe in splitting pills for differing times and reasoning. Has always worked well for my husband.

[RBDNoPDYet]

forest1 Yes there is a study that just came out that proved "In fact, after six months of exercise, the neurons actually had grown healthier and produced stronger dopamine signals." medicine.yale.edu/news-arti...

[forest1 in reply to RBDNoPDYet]

Thank you for this, Is there an original paper anywhere? ie was it proved on a scan? if so what kind and baseline details?

[Raphaekg in reply to forest1]

Here's the link to the full text .nature.com/articles/s41531-... small sample but groundbreaking nevertheless.

[forest1 in reply to Raphaekg]

Thank you for the link, but it doesn't seem to work. Id like to see the paper that contains data etc.

[Raphaekg in reply to forest1]

Sorry about that. Don't know why it didn't work. Try this: nature.com/articles/s41531-...

[forest1 in reply to Raphaekg]

Thank you, i appreciate that. Intersting read.

[Headache58]

Hi, when you say walking is it brisk and for how long please

[forest1 in reply to Headache58]

I do it as exercise and as brisk as possible. I guess I enjoy it too which is why its not a chore!

[Routine100]

Yes I feel that the brain can heal and be trained this is done by exercise. My wife suffers from PD and does not do enough exercise she does not believe this will help. A person must be ready to take the challenge to move forward. Exercise and the right supplements will make a difference. We use my routine of supplements but not enough exercise.

[LAJ12345]

My husbands worst problem has been loss of dexterity in his hands . It makes it hard for him to get into bed so he has been sleeping on top. Over the last few months he has started doing weights and this has strengthened his arms and shoulders. He has just started sleeping under the covers again as he can now lift the duvet up and get into bed for the first time in a couple of years.

We have always done lots of walking . About an hour per day. So his legs have stayed fine.

I think it is a bit of a case of use it or lose it. He has never done a lot of work with his hands.

[forest1 in reply to LAJ12345]

Thank you. I hope he continues with his routine. I'm glad he can get into bed now. Long may it continue.

[Ob6842 in reply to LAJ12345]

Google hand exercises for Parkinson’s disease, and you will find some very helpful videos.

[LAJ12345 in reply to Ob6842]

Yes, done that but he has no interest in doing them. Probably for the same reason he has had no interest in doing any other activities like craft or woodwork or playing a music instrument etc. I think that part of his brain never had strong activity from a young child.

[Zella23]

My HWP and I both walk every day, during the decent weather we were walking up to 3 to 4 miles a day but during the bad wet weather of winter our average went down. He can no longer go to the gym as he has a chronic back issue.

It definitely keeps mobility going but don’t know if dopamine is increased but it seems likely it probably does.

My husband is also helped with keeping his gait and pace to a normal level with his Cue 1, left it off the other day by mistake and definitely noticed a difference.

Been dx for nearly 9 years this year but has had symptoms since 2012. He takes less meds now due to dyskinesia and using supplements to help. Also uses a Redlight hat daily. Does brain training on his PC. Still keeps mobile, cooks, draws fine line drawings too and works on his YouTube channel. Here is a link to one of his drawings he has many now on YouTube and poems. He also posts on poetswall.com

m.youtube.com/watch?v=uOSXK...(Not working as expected?)

[JayPwP in reply to Zella23]

Beautiful drawings Zella. Subscribed.

[Zella23 in reply to JayPwP]

Thank you. There are lots on there under his name, he s got quite a few new ones ready just needs our son to give us some more music with the right amount of time. Our son is a musician.

[JayPwP in reply to Zella23]

So it's a family of artists!!!

[Zella23 in reply to JayPwP]

It would appear so! We met at Catering College so passed our creative skills onto all our children - 2 sons and a daughter!

[Smittybear7 in reply to Zella23]

Amazing

[Ob6842 in reply to Zella23]

What type of brain training does he do? Please tell me more about the red light hat? Beautiful drawings!

[Zella23 in reply to Ob6842]

My husband does brain training on BrainHQ. He is allowed a free go daily although if you want to subscribe you can have more training. Been doing it every day for a few years now. He also does the New York Times free games eg Wordle, crosswords etc.

He started using a Red light Hat from the mens shed in Tasmania about 3 years ago which seemed to make a difference to his symptoms and he took up his interest in drawings again. After about 9 months moved onto the Welred hat ( wellred.com.au) from Australia. Uses it every day it on a timer for 20 minutes. I think it helps with symptoms, I notice if he doesn’t use it when we go away on holiday.

[Gallowglass]

2 years ago I could barely walk. I had physical therapy to improve gait and balance. After 3-4 months I tried the seemingly impossible task of walking a mile. I got up to 2 miles a day and then added Rock steady boxing twice a week. Then came debilitating sciatica, dystonia of toes with curling and dizziness. ( darn). Still walking and doing pt for posture. But not feeling well. Afraid to drive. Only one hour of ON time with CL and Entacapone. Considering DBS.

[JayPwP in reply to Gallowglass]

Keep going. Don't stop.

[Gallowglass in reply to JayPwP]

Jay, have you looked into DBS?

[JayPwP in reply to Gallowglass]

Yes. I am averse to any invasive procedure

[Hope-full1970 in reply to Gallowglass]

I agree, keep walking, keep moving and don't give up!It sounds like you had some improvement.

[gomelgo in reply to Gallowglass]

Have you tried dancing ... around the house to your favorite music? Just moving as you want...

[Painty23Painty in reply to Gallowglass]

never give up

[CuriousMe12]

In many respects it doesn't matter if there's a study showing xyz or not. If you are doing things that make you feel better and work for you then just stay with it. Sometimes you can kill a good thing with overanalysis.

I try to mix anaerobic and aerobic exercise which definitely helps. I think there is much to commend in john peppers fast walking technique. Though my experience is that you may slow PD but not stop it.

[JohnPepper]

I have no free medical care, being self-employed all my working life. My diagnosis was confirmed by three neurologists. After the neds were obviously not working, I joined 'Run/Walk for life and withinm two years, all of my movement symprtoms had disappeared.

I am now 89 yeras old and stll 'Fast Walking'.

[forest1 in reply to JohnPepper]

Hi John, thanks the contribution. I always known your story for some time, and it has always interested me. Can i ask, does the medical world still confirm you have PD? Do you still have non motor symptoms?

[gomelgo in reply to forest1]

I would also be very curious about this. I walk a lot, but not fast walking as much as I would like to. But I do get a few miles a day in on a regular basis.

[stlewy in reply to forest1]

I am eager to know as well. John Pepper - can you fill us in? Thanks

[JohnPepper in reply to forest1]

I have to personally pay for any medical accounts which are not dealing with currrent medical problems. Howver, at the age of 89 and, having had a nasty fall, which was due to the return of my PD symptoms, due to not walking regularly,, I can see my PD returning and becausae of my age, I have started to use a walker and cannot walk that fast with that beast. So, my PD symptoms are slowly returning.

I must pull myself together and go as fast as I can with he walker and, possibly go a little further.

[forest1 in reply to JohnPepper]

Thanks for that John. As said my gait has impoved and that is partly down to you! I like to know the science bit though. But as someone has said, if it works for you then dont over read it. At 89 you are entitled to feel a bit Parkie! Dont over push it , falling aint cool. Allmthe best John.

[JohnPepper in reply to forest1]

I am still doing my walkiing but, not so vigorously anymore. WE hae to keep going!

[stlewy]

First, I would like to thank everyone here for taking the time to express their PD experiences. It is this type of communication that makes us stronger. I had PD symptoms for probably 3-4 years and finally went to the Neurologist 5 weeks ago and was officially diagnosed with PD. My symptoms were minor with off/on left-hand tremors. During those years before PD diagnosis, I was exercising regularly 5 to 6 times a week mixing weights and jogging (5Ks or 10Ks). I was feeling good and was not concerned with the left-hand tremor even in front of my friends (which was noted to me later when I told them I was officially diagnosed). Now here comes the interesting part. In mid-December of 2023, my exercising decreased significantly: traveling, emergencies, and then I caught COVID in January 2024. In February of 2024, we had very cold weather. I essentially stopped jogging for 3 months but continued with the weights, and some elliptical machines for cardio. My diet has also not been good in those 3 months. What I have been noting is new PD symptoms started to occur in late February of 2024 such as tremors being more on than off, tingling in the legs, feeling some weakness in the legs, stiffness in the arm, and minor short-lived facial twitches. Let me add that glucose/sugar blood levels went from normal (98) to pre-diabetes stage (122). My blood pressure was slowly increasing as well. My neurologist informed me to exercise and to control my diabetes to help control PD. I'm hearing huge success stories, articles, and scientific studies that prove exercising for PD significantly slows this disease (some studies like Yale Universities show reversal in PD). All this being said I'm going back to jogging and yes some fast-walking (thanks John Pepper) for warm-ups, and cool-downs), My theory (I heard some here also) is that it took 3 months for my health to deteriorate to the point where my PD symptoms were excelling, I'm thinking 3 months for reversal. I will give status here to see how this hypothesis holds. Also, I know people will ask (and feel free to ask questions), I took CL for 3 days in Feb. 2024, and stopped using it since. I used to take a lot of vitamins in the past, but I cut it down to magnesium supplements, Omega-3, and D3. I will start taking a multivitamin. Here is a reference to the Yale University article about exercising to reverse PD.

medicine.yale.edu/news-arti....

[Hope-full1970 in reply to stlewy]

also exercise 5 days a week, 3 days of fast walking as suggested by John Pepper and 2 days of lifting weights. It seems as though some of the people who have some of the best success at holding off symptoms are doing some sort of cardio every day 6 days a week. Would you agree?

[stlewy in reply to Hope-full1970]

Hi Hope-full1970. Thanks for all of your info. Q: Are you saying you exercise 5 days a week, 3 days of fast walking and 2 days of lifting weights? If so, what are your results and how long have you been doing it? Or are you suggesting that is what some exercisers are doing? I'm going to do a 90-day exercise program (mixed with jogging, fast-walking, and weight lifting) and see if my symptoms change for the better (as I have reduced my exercise in the past 90 days). My symptoms have gotten worse in the past 30 days, but so have my diet, exercise, and overall health. I'm going to work on that and see if it is a game-changer. Today I did a 5K jog, 1 mile fast-walk, and 30 minutes of weight lifting. 6 hours later - I feel better overall: tremors have reduced, legs don't feel weak, stiffness is very mild, no tingling/twitching. I hope I can sleep better tonight. We will see what the long-term 90-day outcome looks like. Let's keep in touch (and anyone else here) to see how our progress/hypothesis and if agile changes are needed.

[Hope-full1970 in reply to stlewy]

I was saying I personally fast walk M,W,F for 3 miles. T & TH I lift weights. I also do pilates,and tai chi or Qi gong 10 minutes each twice a week. I have faithfully exercised for years but since being diagnosed with PD I have exercised more and I believe it's a matter of survival.

I was diagnosed 2 years ago and I am not on medication. I have been doing the fast walking for 5 months.

My rigidity has improved, my walking speed and gait are pretty good. My tremors are better or worse depending on the day. My peripheral neuropathy has disappeared.

Sometimes I feel like I'm declining and sometimes I feel like I'm getting better. I was struggling with turning or sitting up in bed. I increased my situps and all of the sudden I'm having an easier time.

I would like to keep experimenting with exercise, particularly with gaining back movement and mobility of my right arm.

[stlewy in reply to Hope-full1970]

Hi Hop-full1970, I wanted to give a 2-week status update on my PD symptoms now that I've changed my exercise program to more aerobic (jogging/fast walking). Within 3 days, I noticed my walking was no longer a struggle (no longer feeling heavy). The few twitching (back, face) went away. My sleeping has improved by about 50% (some days I fall asleep with no problem/aids). My constipation has improved a lot. As for my left-hand tremors, many times it gets better after I eat a meal. An empty stomach seems to make it shake and also gives me an anxious feeling. After I eat, the anxiety goes away, and left-hand tremors improve (but do not 100% go away); however, I do get worse stiffness on my left arm and hand for an hour or two. The tremors calming down some is not permanent (but I'm only 2 weeks into this). It returns and again more so as my stomach nears empty. I should note that I am fighting diabetes (I'm pre-diabetic). I'm hoping to reverse that too as I continue my jogging. What about yourself? How are your tremors after you exercise? How is the right-arm stiffness? There was a weight-lifting exercise I was doing that was aggravating my left arm. I stopped doing it for a couple of weeks, and that helped a lot.

[Hope-full1970 in reply to stlewy]

Hi Stlewy,That sounds like a dramatic change in a positive direction. That's great news 😀!

When I start out on the treadmill my right hand tremors for the first 5 to 10 minutes and then stops. My tremors are worse in the morning and are not as noticeable or gone by noon.

My right arm stiffness and neck stiffness/ rigidity is gone at the moment due to working with an osteopathic Dr. who does craniosacral therapy. I have had 4 treatments. This is the furthest I have gotten so far in releasing the tension/pain and rigidity.

With weights I stay away from triggers. I don't lift the weights over my head unless I go super light. My back does not like the reverse chest fly. I can go much heavier with leg weights with no issues.

I also get that panicking feeling if I don't eat. I have to eat more before I workout.

My sister is pre diabetic. She has a had good success with berberine and liposomal glutathione by Researched Nutritionals.

I'm on the glutathione, great stuff 👍 a little pricey but you can cut the dose in half and make it last longer.

[stlewy in reply to Hope-full1970]

Great info! On the stiff neck, last summer, when I returned from jogging outside in the middle of the hot day soaking in sweat, my neck would get a bit stiff and my voice would soften. I didn't realize it was PD-related enhanced by dehydration. The hydration has helped much this year, but the challenge of the hot summer is coming. I will look into glutathione. Is that for helping with diabetes? Today, I had an interesting experience. I was feeling lethargic/lightheadedness when I woke up (very uncommon for me). It was a challenge to walk at the grocery store (didn't wobble, just felt dizzy). I still went half jogging/half fast walking by the windy lake for a total of 3.6 miles in 41 minutes (dizziness/lethargy disappeared). I then sat down at the sports pub to watch a basketball game, picked up my glass of water with my left hand, and realized the tremors were 99% gone. It stayed that way for about 1. 5 hours and on an empty stomach. I also had no anxiety/panicking feelings and any shaking. I did start taking Metformin (diabetic medicine) about 3 days ago but only 1/2 the dose. I'm not sure if that is helping (controlling my sugar levels and shaking/anxiety or if it was the consistent jogging/fast walking over the past two weeks or something else). I also felt very happy (but a little tired). Need to keep it up, and your exercise/health info and persistence are motivating and helping me - so thank you very much!

[Hope-full1970 in reply to stlewy]

That's great! Keep it up! Feeling happy is a really good sign.Exercise does so much good for our body.

I have to keep in mind to drink alot of water as well. The heat is very difficult for me. In the Summer I take ice cold showers before hot , like for a minute or so and work up. That helps me alot. I would do it in the winter but I'm chicken. I'm going to work on that because I know it's very beneficial.

Glutathione promotes healthy detox in the liver. It's essential for a healthy immune system and cellular health.

[forest1]

thank you for your story. I agree sharing is vital and helps move life in the right direction.

[forest1]

Thank you for all your posts! Its been an interesting post. I'd like to see more studies into those who have had PD for 10 year plus to explore the "reversal" of the disease. Also, I know there's not a lot of money in it, but more exercise studies need to be commissioned. I think the government needs to be involved - money could be saved as surely the knock-on effects to cancer, cardiac, etc never mind PD delay of nursing care would be of benefit. Anyway, keep on moving and share results! Anyone try the Norwegian 4x4? Now that's👍😀 a kill or cure!

[MarkPrana]

Best and most balanced scientific view I've come across is here in this video with Prof. Bas Bloem, seems it is extremely likely and the research is at quite an advanced stage now:

youtu.be/Q6d0J81VomY?si=V44...(Not working as expected?)