Hey everyone. I’ve always exercised ever since diagnosis but often had a sense of being slightly disappointed with the results when I compared myself to others sometimes startling rewards. Well 4 weeks ago, I had an operation to fuse two toes, misshaped due to constant clutching as well as gait disturbance from this super disease we have. Boy have I gone downhill. I’m not able to do anything for a further 3 weeks and the frustration and severity of my Parkinson’s symptoms is awful. I’ll be back 😎, but it’s give me a valuable insight into what exercise done regularly and Intensively does for us. As Joni said ‘you don’t know what you’ve got til it’s gone’.
The benefits of exercise : Hey everyone. I... - Cure Parkinson's
The benefits of exercise
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jeeves19
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48 Replies
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Hi Jeeves. Hope you get better soon so you can resume your exercide. John Pepper also reported worsening when he had to stop for some operation then he restarted and gradually increased.. mind yourself!
Man! This is so true. I also compare myself to normal healthy people who take a lot less care of themselves and zoom past me in every way. I get jealous and furious inside. Just under two weeks ago, I had a second lumbar laminectomy with fusion surgery. Havent done any walking or exercise since April or May because of the discomfort of spinal stenosis. Now I am starting to walk again. Four days after surgery I did 300 steps walking with a walker. Now 12 days post op, I actually did one mile each of the past 2 days. Its going to be a bit of a road to recovery but Im glad to be back on the path again. Jeeves, good luck to you, friend! We wont give up. Something inside of me says our hard work will someday be rewarded, I just hope thats not bullsht.
Good to hear from you buddy. Hope that the back improves. What’s strange is this though: I wondered if one were to have a new knee, how long it’d be before you could get on a bike. Answer: 2/3 weeks. Strange eh. A big op like that.🤔
yeah, well, new hips, new knees - you're going from bone-on-bone to a completely new joint. Once the incision heals, you should be good to go!
Do you think they could insert a new brain 🧠? 🙁
😂😂😂🤔
I was told I needed a knee replacement in 2014 and so far I have avoided it- first I was getting hyaluronic acid shots in the knee but then I started taking niacinamide and I have not had an injection since just before covid hit - this is just a comment on the knee situation because my husband is the one with Parkinson's and I really wish we could find something that worked this well for his situation
SOunds like we might have similar knee issues, what dose and brand of niacinamide are you taking?
Swansons - the naturopath said to start out low like around 500 mg and then if that goes well you can take more. She said some people have problems with stomach upset when they first take it. I didn't but it is best to proceed with caution. I now take it three times per day - once in the morning, once midday, and once in the evening
thnx much! how long were you on this before you had no pain in you knee(s)
it was a gradual reduction and I also had acupuncture to help my knees after I started taking it - my knees are not perfect and stairs still give me a little pain but I had severe pain just walking before and now if I am on flat ground walking the pain is pretty much gone
so here is a study that was done on niacinamide: "Conclusion: This study indicates that niacinamide may have a role in the treatment of osteoarthritis. Niacinamide improved the global impact of osteoarthritis, improved joint flexibility, reduced inflammation, and allowed for reduction in standard anti-inflammatory medications when compared to placebo. More extensive evaluation of niacinamide in arthritis is warranted." pubmed.ncbi.nlm.nih.gov/884....
article about niacinamide and its history in use for arthritis: goldenhealthmethod.com/arth...
thnx so much for this info
Hope your back continues to improve! Sounds very painful! All the best!
Good luck on your recovery. Let your body heal before doing anything too strenuous.
Do some upper body exercises, stretches and weights - from sitting in a chair for safety.
Hi Adam! Oh wow, man!! What a bummer! I had no idea! My toes, on my left foot have curled, and I get spasms, in that foot, where I’ve fallen twice now, while walking my dog. Uneven ground is my enemy! I certainly won’t get my toes fused, after you told us this! What a bad state to be in! I wonder if the foot Doc could fix that up, better for you! Give yourself some time, and for healing, and maybe it will get better, and you can get back to exercise! As the saying goes, patience is a virtue! If not, your Doc will hopefully, be able to help! I’m so sorry you have to go through this! It’s not like you haven’t enough, to be concerned with, having a family & all! I’m glad you shared this with us! As you say, you don’t know what you got, till it’s gone! With this crum bum disease, I feel I’ve lost too much, yet I realize, as my Doc says, ‘ keep moving’! I would rather wear out, than rust out! Ha! Take care!
good luck with recuperating and getting back to your exercise
All the best getting your mobility back Jeeves! Sounds very uncomfortable!
I often think I am not benefiting enough but my aerobic exercise has gone down recently and I have started to experience many more symptoms
Not that I'm an expert. I was diagnosed just over eight years ago.
I was too busy working to do any exercise. I never played tennis with my father or brother or danced or walked with my wife.
I hired a trainer to get started. She came three times a week, and I was in the chair for two or three months.
I have worked up to two Rock Steady Boxing (RSB) classes a week, two Zoom classes, and two sessions with my original trainer. I am only allowed to do headstands when someone is available to spot, I can do The Crow in yoga and hold it for a long time. I sat with my back pressed against a wall today at RSB (no chair) for two minutes, and it was easy.
My wife worked out all her life. She danced at the Watergate health club in Washington and did two aerobics classes daily in the studio where Tamilee Webb (Buns of Steel worked. She danced jazz with jumps and landed on her knees with leggings for padding. You know where this story is going.
When I started to exercise, she got one knee scoped, and a few years later, the other knee was replaced. She reminds me regularly not to overdo it. If you do, you won't be able to exercise fora long time. I feel better after working out, and I believe that my Parkinson's symptoms diminished when I switched to six workouts a week plus walking. Cognition as well as tremors. I spoke to a neighbor last week that I don't know well. We said hello and chatted. I couldn't remember her name. I concentrated, and I came up with it! I felt good.
Do you have access to a pool? Can you lift weights? Have you checked for Parkinson's exercise classes for people in wheelchairs? I went to special Parkinson's classes at a great fitness center that was owned and run by a hospital. They did physical therapy for hospital patients and had classes aimed at helping pregnant women, people with Parkinson's, and some other conditions; There were recently diagnosed people who had no visible symptoms, all the way to people who were in wheelchairs and needed a helper to get around. I found the wheelchair people very motivating. By the way, they had a dance class one day a week. We warmed up on chairs. Some people stayed in their chairs. We did ballet at the bar, did square dancing, and danced to different songs. It was fun.
Sadly, this place closed down during the Covid pandemic and hasn't reopened.
Speaking of sad, a guy at my new RSB class was amazing on the speed bag. He was better than most of the coaches and volunteers. His problem was freezing. I didn't know what it was until I saw him stop moving while walking and then slowly tip over. Yikes. Time to work harder. He is staying with a relative in another county. I hope he comes back. He offered to give me speed bag tips. If someone told me nine years ago that I would be interested in tips on hitting the speed bag, I would have thought they were crazy,
Good luck. Let us know how you are doing!
wow. Such a generous post . Thanks for those insights. Very interesting and an encouragement for sure. I’m just looking forward to getting back to the gym and getting a sweat up. Never really been a fan even though I grudgingly acknowledged that it was probably doing some god some good. But now I will try and embrace the gym as a trusted friend rather than a somewhat tolerated fiend. 😂🧠. Thanks
we each have a different cocktail of challenges and outcomes. We can learn from each other. I have never heard anyone say that they wished they had stayed home on the couch.
Amen Jeeves to the Joni song reference. The constant battle is the norm for us-every day. I just had knee replacement and 7 months after the surgery am only at about 70% of previous strength and stamina, but I’m still fighting to keep the exercise going. Stay strong and be persistent with the workouts!!
Nice one. All the best 😊
hi jeeves. Thank you for the thoughtful post. You've probably had this suggestion but I'll throw it out there anyway. Have you tried sauna bathing? Lots of níce benefits to the brain and body.
I like the idea but only my wife’s posh health club has one. My own grubby gym doesn’t boast this luxury unfortunately.
Hello:
How are you doing? Feeling better?
Just checking.
Cheers!
Hi. Thanks so much for your kind enquiry. I’m still struggling to be honest. I’ve got two big issues: firstly, sleep. I think this is when much repair is made by the body. But if you’re not sleeping, I presume none of this takes place? I’ve always done well on anti-depression meds during my 7 year adventure (or Horror Story).
Secondly, i must now be very low on dopamine naturally because my body seems unable to perform some of the exercises that I used to do. Example: I used to do 30 mins on the stationary bike, but now I struggle to do 15. So I’m not really improving because I can’t exercise long/hard enough if you see what I mean? Complicated but you did ask 😂
Good luck.
Can you break up your time on the bike with other exercises?
Have you looked at Parkinson's Disease workouts on YouTube?
My wife has sleep apnea. I went to her doctor when I wasn't sleeping well. He said to stop getting up and reading emails in the middle of the night. He told me I had bad sleep etiquette and gave me a handout. I found it! How do I send you a PDF?
I’ll send an email to your private messages eh?
ok
Hi i can recommend a plate vibration machine for standing on and using in a press up position 
I use this every day helps with stiff muscles
would like to hear your recommendation
for example
amazon.co.uk/vibrate-plate/...
Jeff. What’s the thinking behind this? Have you any personal experience of them? Let me know if you have time eh?
They are low-impact machines that generate whole-body vibrations which improve muscle contraction. I owned one before PD diagnosis but now i wouldn't be without it....great first thing in the morning when my muscle stiffness is at its worse
I never exercised before diagnosis. Started at Rock Steady Boxing in 2007. Now training for my 4th marathon next year.
A, i’m sorry you’re dealing with this. You will be back for sure! I really believe that. You’re always determined and you’re very knowledgeable. So hopefully the three weeks will go quickly; Actually it’s less than three weeks now. Yay.
It’s a nasty baggage, Parkinson’s. And sometimes it seems like it gets worse not in little increments but all the sudden, BOOM. I was thinking the other day is it I would just be happy to plateau now. Which is a bit discouraging.
Can you do any flat on your back sort of exercises? And also, perfect time for some extra neuro plasticity work. I know you probably do a lot already, though. Or would this be the time to learn some outrageously difficult music? But you probably already do that too. Hmmm...something thats new to you? (I just had this vision of you presenting a picture of your newly created beaded macramé something or other. Kidding just kidding LOL.)
Anyway, I am very sorry that you’re laid up right now. I wish you super duper fast healing. And then you can work on getting those wonderful strengths of yours back again. Yeah!
Also, I’m not sure of your feelings about this, but I was very sorry about the queen. She lived to the same age my dad did. That generation really had/has grit!
Take care.
Wishing you the best in your recovery. I know you’ll get back to being able to exercise!
I’ve had a couple of years of struggling with sleep now, and have slacked off on exercise. I still do some most days, but less intense and less time. BIG Mistake!
I’m starting back and every time I feel better. I “run” on an elliptical to keep my knees from damage.
Thanks for the sentiment. Yes, I use the elliptical a lot: certainly better for the knees! And coincidentally I’ve been struggling with my sleep as well. I thought I had that one under control but it’s reared it’s ugly head recently and I’m at a loss to know what to do (you know when you’ve exhausted all of the anti-depression tablets and sleeping pills which don’t work any more because your body has got used to them 🙁). I’m thinking of going back to amitryptaline, which I believe has it’s dangers but then again so does week after week of 2 hours sleep a night eh ?!
The best to you and your family. 😊
Definitely with you on that. I'm sleeping as long as I keep stress at close to zero, but need to reduce the sleep meds...I'm starting to have cognitive symptoms, I believe, due to sleep meds and anti-depressants, but when I don't sleep, brain doesn't work well either.... sounds like you've been dealing with similar. Totally with you on the conundrum of sleep and sleep meds.
I did a round of CBT-I years ago and it was helpful. I'll probably end up doing that again.
I'm also trying to learn to focus on what makes me happy -- sleep better with positive emotions than with worry, rumination and catastrophic thinking!
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