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#21 Beau's Mom

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Posted 17 December 2011 - 09:22 PM

I've never stuck with an exercise program for longer than a year in my life! Being diagnosed with PD has given me the impetus to keep up with it. And, now I have to log it for my PT/OT/ST/Neuropsychologist (and myself, because it I don't write it down, I won't remember if I did it or not). My husband doesn't think I'll succeed at it and frequently tells me so. I just ignore him and keep doing the next right thing for me.

Thanks to all who have shared on this topic. I need that repetetive reinforcement. I have learned from some of y friends who attend AA that "Repetition strengthens and confirms...and leads to successful change." I don't remember the whole quote, of course! ;-) If anyone knows the whole quote, please share it with me.

I appreciate every post I read.

Dianne
Dianne

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#22 Lin

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Posted 18 December 2011 - 08:35 AM

Glad to see so many of us are exercising!

Dianne, proud of you! Like you said, just keep doing what you know is best for you. And when don't feel like doing it, do it anyway. Action comes before motivitation. Lot's of Parky love going out to you!

Jer, you asked what exercises people are doing. Won't go into individual exercises, but in general terms, I'm doing crossfit training. You can read about it on Internet. Was inspired to try boxing by rocksteadyboxing.com which helps PWP. Found a boxing coach that uses crossfit and functional training to strengthen his boxers. Obviously PWP shouldn't do contact boxing as we need no more blows to our brain, but the exercise is great. Love the crossfit/functional training the most, get a better workout in much less time. Leaves me time to do 25-30 minutes of stretching which is also vital. The boxing part is hard and I am horrible at it, but I enjoy hitting the bag. While it is difficult (& frustrating at times) to make my right arm move repetively, much less with some speed, it is good to keep working it. It feels good to literally be fighting back.

Check out the rocksteadyboxing.com site, it is extremely inspiring! They have classes for PWP at various levels. You don't have to have a lot of physical ability, just desire and determination.

The main thing is get moving. Do whatever you will keep doing. Bet in time that you'll be doing more than you ever thought possible.





Best wishes, Lin

Edited by Lin, 18 December 2011 - 08:35 AM.


#23 NorthernRose

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Posted 22 December 2011 - 12:59 PM

Hi -

I haven't posted too much for a while - I'm not sure if my life is getting busier, or if I'm just getting slower at it! :) I'm thankful for this site and these forums - so glad they're here. I see some familiar names, and some new ones. There's one name I miss very much...I'm glad his sweet wife posts every once in a while.

This past month or so has been difficult. "Life" is extremely busy - we have 5 kids, all still at home (and 3 dogs who add much to the noise and chaos), and I love every minute of it - except when PD gets me down, and lately it's been tough. Dystonia and dyskinesia have been problems, dyskinesia being worse lately. My MDS added Amantadine to my meds to counteract the dyskinesia. And it worked - it's really taken the edge off of them. But I've had more depression, more anxiety, and more fatigue since then as well. I don't know if it's because of the new med - I'll have to ask my doc about it. But until yesterday, I hadn't exercised in at least a month. It's so easy to let it slide...especially when you're feeling crappy. Sometimes when I get up in the morning, my feet shuffle as if my ankles were shackled in irons, my right leg and foot are so tight w/ dystonia it's painful to move, my lower back, shoulders, and hips are still aching from the night's "sleep", and I'm still trying to clear my head from the very weird dreams I just had...yeah, I'm going to get on the treadmill in that condition. (insert sarcasm)

Well, yesterday, I did it anyway. I took my first dose of meds, and even though they hadn't kicked in yet, I got started. (Even "waiting till the meds kick in" will give me enough of a window of opportunity to get distracted from exercising.) I started out w/ the Wii - and did really bad, but I didn't care. I was moving, and it felt good. I moved to the treadmill, and my right leg didn't want to cooperate, but I kept going...if I concentrate on it, I can relax the muscles a little...kept doing that and waiting for the meds to start working. Eventually, everything loosened up, and I walked over a mile, at times at a pretty good pace...and I felt so good, so much better - all day long!

Here's what I think about exercise and PD - and this is purely my gut feelings, not trying in any way to be knowledgeable about the subject. You could call this "Confessions of a P.E. (Phys. Ed. class) flunky" - seriously, I never stepped foot on a treadmill until after PD.

Exercise "jumpstarts" the day - gets my body and muscles moving, forcing them to move farther and faster than they will on their own. It's intentionally making my body move the way that it can (it is physically able to do), but won't - unless I intentionally make it happen. Once it's jumpstarted, then it tends to go along, in gear - the meds kind of like the gas that keeps a car running. Not perfectly...but so much better than "limping" through the day.

Exercise strengthens the muscles that would atrophy from underuse otherwise. PD makes our movements smaller, constricting us like a cocoon...but there's nothing wrong with the muscles that would keep them from being strengthened. If we intentionally exercise those muscles, and "force ourselves" to make big movements, we can stay stronger longer.

Exercise reminds my body of the right way to move. When I'm walking on the treadmill, my right leg does not drag - I have to intentionally keep it moving, and take longer strides, if I want to stay upright! While I'm walking, I intentionally swing my arms back and forth (otherwise, they'd just hang there) and I intentionally pull my shoulders back, and try to squeeze those shoulder muscles (I'm sure there's a more correct term for them) together - to keep my posture up (otherwise, I would slump). And once I've exercised, it's much easier to keep these things going throughout the day - to intentionally make my body move the way it should.

Exercise gets my heartrate up and gives me a cardio workout. Has to be good for you. Common sense.

Exercise improves my mood. It shakes away the depression, it burns through the anxiety. It chases away that awful, awful feeling, and the world goes from washed-out gray to bold and bright living color. And I am a much nicer person to be around.

Exercise improves my thinking. It lifts the fog and clears my head. I can think better, and I can interact w/ my family better.

Exercise gives me more energy and kicks apathy in its big ole butt. I hate apathy.

I know exercise does great things for the body physically - all the stuff about muscle tone, and stretching tendons and ligaments, and oxygen in the blood, and burning calories, and a thousand other things I don't know about. But I wonder..what does it do to our brains? We know exercise causes a release of chemicals that improve our mood. But what else does it do? Does it re-wire a path that has malfunctioned? Does all of this intentional thinking create new paths to replace what's broken? Deep in our brains where the dopamine "factories" have been shut down by PD, and everything is very dark - does exercise set off a spark of light, a glimmer of hope, because we are not giving in to the darkness...we are fighting back, and it's working.

I'm totally convinced that exercise is a powerful weapon against PD. I know there are studies being done, and they're getting positive results w/ exercise - but I think that's just the tip of the iceberg. The medications, the treatments like botox shots for dystonia, DBS surgery - these are all very effective tools to keep PD at bay. But, in a way, I think exercise trumps them all. For one thing, no side effects. With meds, you're putting large amounts of chemicals in your body on a daily basis, with who knows what long term effects on vital organs, etc... (I sometimes wonder why I'm still taking Azilect...is it doing anything for me? It's so new - does anyone know what it will do to me if I continue it for the next 10-20 years, if I'm around for the next 10-20 years?) With DBS, you're obviously exposing yourself (and your brain) to the risks of surgery and further complications. But with exercise, those major side effects and risks are non-existent. You're doing something that even if it had absolutely no effect on PD whatsoever, would still be worthwhile, because it's just plain good for you.

Here's a story that inspired me - I wanted to pass it on.

http://www.yourhoust...6f1e0e3952.html

My favorite quote of the article is "running water never freezes". If we keep moving, keep exercising, keep intentionally doing what we can, instead of settling for what we will...we won't wind down like a worn-out clock - at least not nearly as fast. :)

I really think they should do a PD version of "The Biggest Loser". They'd have to change the name, but it's all about changing lives...improving lives through exercise and proper nutrition. Instead of ending each show w/ how many pounds they've lost, they could make the competition all about how many pills you've been able to cut out of your regimen!

Just a thought.

Janet



I sooooooooooooooo agree with you Jay-jay. We have to compensate our stressful (physical, emotional and psychological) environment with every little thing that is available and exercise is something that we can really afford to do no matter where, how, and what we are. :)

#24 NorthernRose

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Posted 27 December 2011 - 04:46 PM

Hi -

I haven't posted too much for a while - I'm not sure if my life is getting busier, or if I'm just getting slower at it! :) I'm thankful for this site and these forums - so glad they're here. I see some familiar names, and some new ones. There's one name I miss very much...I'm glad his sweet wife posts every once in a while.

This past month or so has been difficult. "Life" is extremely busy - we have 5 kids, all still at home (and 3 dogs who add much to the noise and chaos), and I love every minute of it - except when PD gets me down, and lately it's been tough. Dystonia and dyskinesia have been problems, dyskinesia being worse lately. My MDS added Amantadine to my meds to counteract the dyskinesia. And it worked - it's really taken the edge off of them. But I've had more depression, more anxiety, and more fatigue since then as well. I don't know if it's because of the new med - I'll have to ask my doc about it. But until yesterday, I hadn't exercised in at least a month. It's so easy to let it slide...especially when you're feeling crappy. Sometimes when I get up in the morning, my feet shuffle as if my ankles were shackled in irons, my right leg and foot are so tight w/ dystonia it's painful to move, my lower back, shoulders, and hips are still aching from the night's "sleep", and I'm still trying to clear my head from the very weird dreams I just had...yeah, I'm going to get on the treadmill in that condition. (insert sarcasm)

Well, yesterday, I did it anyway. I took my first dose of meds, and even though they hadn't kicked in yet, I got started. (Even "waiting till the meds kick in" will give me enough of a window of opportunity to get distracted from exercising.) I started out w/ the Wii - and did really bad, but I didn't care. I was moving, and it felt good. I moved to the treadmill, and my right leg didn't want to cooperate, but I kept going...if I concentrate on it, I can relax the muscles a little...kept doing that and waiting for the meds to start working. Eventually, everything loosened up, and I walked over a mile, at times at a pretty good pace...and I felt so good, so much better - all day long!

Here's what I think about exercise and PD - and this is purely my gut feelings, not trying in any way to be knowledgeable about the subject. You could call this "Confessions of a P.E. (Phys. Ed. class) flunky" - seriously, I never stepped foot on a treadmill until after PD.

Exercise "jumpstarts" the day - gets my body and muscles moving, forcing them to move farther and faster than they will on their own. It's intentionally making my body move the way that it can (it is physically able to do), but won't - unless I intentionally make it happen. Once it's jumpstarted, then it tends to go along, in gear - the meds kind of like the gas that keeps a car running. Not perfectly...but so much better than "limping" through the day.

Exercise strengthens the muscles that would atrophy from underuse otherwise. PD makes our movements smaller, constricting us like a cocoon...but there's nothing wrong with the muscles that would keep them from being strengthened. If we intentionally exercise those muscles, and "force ourselves" to make big movements, we can stay stronger longer.

Exercise reminds my body of the right way to move. When I'm walking on the treadmill, my right leg does not drag - I have to intentionally keep it moving, and take longer strides, if I want to stay upright! While I'm walking, I intentionally swing my arms back and forth (otherwise, they'd just hang there) and I intentionally pull my shoulders back, and try to squeeze those shoulder muscles (I'm sure there's a more correct term for them) together - to keep my posture up (otherwise, I would slump). And once I've exercised, it's much easier to keep these things going throughout the day - to intentionally make my body move the way it should.

Exercise gets my heartrate up and gives me a cardio workout. Has to be good for you. Common sense.

Exercise improves my mood. It shakes away the depression, it burns through the anxiety. It chases away that awful, awful feeling, and the world goes from washed-out gray to bold and bright living color. And I am a much nicer person to be around.

Exercise improves my thinking. It lifts the fog and clears my head. I can think better, and I can interact w/ my family better.

Exercise gives me more energy and kicks apathy in its big ole butt. I hate apathy.

I know exercise does great things for the body physically - all the stuff about muscle tone, and stretching tendons and ligaments, and oxygen in the blood, and burning calories, and a thousand other things I don't know about. But I wonder..what does it do to our brains? We know exercise causes a release of chemicals that improve our mood. But what else does it do? Does it re-wire a path that has malfunctioned? Does all of this intentional thinking create new paths to replace what's broken? Deep in our brains where the dopamine "factories" have been shut down by PD, and everything is very dark - does exercise set off a spark of light, a glimmer of hope, because we are not giving in to the darkness...we are fighting back, and it's working.

I'm totally convinced that exercise is a powerful weapon against PD. I know there are studies being done, and they're getting positive results w/ exercise - but I think that's just the tip of the iceberg. The medications, the treatments like botox shots for dystonia, DBS surgery - these are all very effective tools to keep PD at bay. But, in a way, I think exercise trumps them all. For one thing, no side effects. With meds, you're putting large amounts of chemicals in your body on a daily basis, with who knows what long term effects on vital organs, etc... (I sometimes wonder why I'm still taking Azilect...is it doing anything for me? It's so new - does anyone know what it will do to me if I continue it for the next 10-20 years, if I'm around for the next 10-20 years?) With DBS, you're obviously exposing yourself (and your brain) to the risks of surgery and further complications. But with exercise, those major side effects and risks are non-existent. You're doing something that even if it had absolutely no effect on PD whatsoever, would still be worthwhile, because it's just plain good for you.

Here's a story that inspired me - I wanted to pass it on.

http://www.yourhoust...6f1e0e3952.html

My favorite quote of the article is "running water never freezes". If we keep moving, keep exercising, keep intentionally doing what we can, instead of settling for what we will...we won't wind down like a worn-out clock - at least not nearly as fast. :)

I really think they should do a PD version of "The Biggest Loser". They'd have to change the name, but it's all about changing lives...improving lives through exercise and proper nutrition. Instead of ending each show w/ how many pounds they've lost, they could make the competition all about how many pills you've been able to cut out of your regimen!

Just a thought.

Janet


Janet, to add:

exercise brings about the anti-stress hormones to help you keep your perspective despite the everyday problems you encounter. Cheers to a healthy body and to exercise! :)

#25 rws2266

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Posted 28 December 2011 - 04:20 PM

I am starting a yoga class for Parkinson's patients at the first of the year, I will keep everyone posted as to my progress.

Rob

#26 shakti

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Posted 28 December 2011 - 10:48 PM

I am starting a yoga class for Parkinson's patients at the first of the year, I will keep everyone posted as to my progress.

Rob


i saw a bollywood dance class on utube. a master class. someone showed it on facebook. it looks like fun...and great exercise. i just am wary about the turns, i could see myself flying out the window by mistake. but some of the dance moves look do able and fun. i love bollywood music.

#27 shakti

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Posted 28 December 2011 - 10:54 PM

My link

i saw a bollywood dance class on utube. a master class. someone showed it on facebook. it looks like fun...and great exercise. i just am wary about the turns, i could see myself flying out the window by mistake. but some of the dance moves look do able and fun. i love bollywood music.



#28 ases22

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Posted 12 April 2012 - 04:42 AM

How do you get the energy to exercise when you are so fatigued? Is there anything that can be done about fatigue? Are there supplements or foods anything that could help? I know if I exercise that will help but it takes all my energy to get ready and out of the house that I dont have the energy to exercise after that.

#29 LaurenNY

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Posted 12 April 2012 - 03:04 PM

HI all,

I'm new here and haven't been officially diagnosed. I'm waiting to see a MDS in September.

You can't imagine how happy this topic has made me. I love running and knowing that others with Parkinson's are able to continue running has given me hope. I was never into fitness until about 13 years ago, and didn't know how I would get along without it. Running, Insanity, P90X, BodyPump, Turbo Kick are a few of my favorite workouts.

Lauren

#30 Delta

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Posted 12 April 2012 - 04:30 PM

Welcome Lauren! I too am a big exercise fan. I play tennis 3-4 times a week and I try to do something every day. My MDS said he wants me to exercise at 30 minutes a day 7 days a week. He said I may not see the difference in a year but I should see a difference in 20 years. Keep up the exercise!

As to fatigue, I exercise first thing in the morning so it hasn't been a problem for me. My issue isn't so much fatigue, but I fall asleep at inappropriate times like while I'm talking or at the dinner table.

Delta

Edited by Delta, 12 April 2012 - 04:31 PM.


#31 gazelle66

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Posted 20 May 2012 - 04:09 AM

Hello Janet,
Thank you for a very good post and an important reminder.

#32 bjenczyk

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Posted 21 May 2012 - 01:44 PM

I was diagnosed nearly two months ago at age 47, and one of the biggest challenges to me was the thought that I would lose the ability to do the things I love - exercise, hike, and ride my bike. To some extent these things define me. It is really encouraging to hear of how others are managing their condition and staying active. Posts like this are really important to those of us just learning to live with PD.

#33 cb.berreau

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Posted 21 May 2012 - 09:51 PM

I am in the same boat as Jeanette, nice to know I'm not rowing alone! The posts are encouraging and hopefully I will make myself find the time to get moving. :razz: cyn

#34 janiecleo

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Posted 22 May 2012 - 10:00 PM

I've had PD for 16 yrs now, and have tried (sometimes more successfully than others) to exercise. For a number of years, that meant belonging to a gym and meeting with a friend to walk on the treadmill and do strength training.I also walked outside and went on several adventure hiking trips. I also took yoga for a while. However, my PD has finally started worsening in the last couple of years (I'm 63, and retired/went on disability in Sept. 2009.) I also have significant arthritis and have had a variety of joint replacement surgeries (knee, shoulder, big toe)and had a broken hip that didn't heal for a year about 10 yrs ago. Sometimes I feel sorry for my body, it's been so beat up.

I have found since retiring that water exercise combined with seeing a personal trainer once a week is the best way for me to get moving. It costs a bit of money, but I feel it's an excellent use of my disability income. In both the aqua stretch classes and in my private training sessions, there is a combined focus on balance, strength training and flexibility. With increasing dyskinesia, I find walking on land to be increasingly difficult. My gait was already disturbed from the broken hip in 2001, and despite the regular exercise, it's gotten worse. I have not fallen, but have caught myself several times feeling it could easily happen.

I've just purchased a cane and am going to try using it so I can get back to walking. I am unsteady enough at this time that I'm afraid to walk on a treadmill unless someone else is around (and I live alone, so that is not very frequent),

My neurologist now has me taking Sinemet every 2 hr and 15 min throughout the day. I've tried other drugs through these years: Mirapex (which was a total disaster; I was one of the early 'victims' of compulsive behaviors.), amantadine (didnt do anything for me) and recently, Azilect. I was so hopeful with the azilect because of the rumors that it might slow down the progression of PD. But unfortunately, my response to the drug was increased dyskinesia and lots of anxiety. I seem to be very drug sensitive so I'm now understandably hesitant about any new drugs.

Anyway..........please excuse this long-winded treatise, but I have not really gotten any formal support for my PD through these years and now I find I need it.

So I concur that exercise is wonderful and want to continue what I'm already doing and would like to do more. But at the present moment, exercise outside of that at the gym is too dangerous. My neurologist has spoken with me about DBS. I've recently had the neuropsychological tests (thank heavens, my body may be broken but my brain still seems to work well.) I have an appointment with a neurosurgeon on June 18th to talk about DBS. I'm hoping that if I have the surgery, I might be able to get back to the walking I've always enjoyed. Right now, a walk around my neighborhood is an impossibility.

But I really shouldn't complain when considering the fact that I was first diagnosed in 1996 and have been able to lead a fairly healthy and productive life until this last year or so. In regard to the issue of fatigue, I find that to be a constant struggle. I have learned that I am best in the mornings, so that's when I try to get things done. By the evening, I turn into a pumpkin.

So, in closing, I certainly want to encourage everyone to exercise for all of the reasons outlined above. I am convinced that all the gym time I've spent since 1996 has kept me going. And it also provides a terrific social outlet. I'm also thankful for the balance training, especially after suffering a broken hip from a fall in 2001. But I also want to acknowledge that as the PD progresses, finding ways to exercise becomes more of a challenge. I think it is likely that I will have the DBS, and would be thrilled to be able to take a stroll in the woods by the time the colors start changing this fall. I'll keep you posted. Jane

#35 Beau's Mom

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Posted 22 May 2012 - 11:42 PM

Jane, thank you for sharing. I've just been diagnosed about one and a half years, but my first symptoms started in the early 1990's. I've fallen several times and now have a great pink walker that lets me walk on days when it doesn't rain. There have been quite a few recently, considering I live near Seattle. Your story is inspiring and heartbreaking all at once. I hope to hear from you again.
Dianne

I am not a human being trying to have a spiritual experience; I am a spiritual being having a (sometimes difficult) human experience.

#36 Pawsswassus

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Posted 12 December 2013 - 12:45 PM

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#37 Drummergirl

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Posted 13 December 2013 - 08:43 PM

I truly feel exercise has been my best medicine....I was an athlete in school 35 years ago and it has been my best friend since.
I love walking, purchasing a treadmill so I could walk whenever I wanted has been sooo theraputic and I believe it has played a significant role with regards to the slow progression of my PD of 19 years.

I 've had to modify my workouts for the past two months due to a torn meniscus, looking forward to post surgery, but not the surgery itself. Hopefully it will go as smoothly as the other knee 6 years ago. Too many hikes in the White Mountains.

Guess, I will stick with the treadmill, strength, tone and flexibility exercises.

Great post, enjoyed reading everyones input.

#38 Annikin

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Posted 14 December 2013 - 08:58 AM

I couldn't agree more with everyone's positive attitude to exercise.  I found that walking and the Wii are great low impact workouts that do not leave me overly sore the next day or over heated, not to mention a spin cycle and treadmill in my livingroom  for when I watch TV. Every time I walk I think of how I am kicking Parkinson's where it lives. Plus, the Wii allows me to workout inside during the very hot Florida summers and I can switch the settings to work both arm equally in tennis, golf and baseball. I noticed something while walking my dogs that may help with the stiffness and lack of swing many of us have typically in one arm and thought I'd share it. When I hold the leases in my right hand,my stiff arm, my left, starts to swing like normal and in affect I am exercising it- try it, it may help prevent your arm form atrophying in that weird way. Also for balance the Wii Fitness has an entire category that works your balance- my favorite is the ski jump.

 

When I was diagnosed and informed my doctoral professor that typing was the bane of my existence as I type like I were dyslexic with my left hand moving slower than my right (nothing like having a 200 page dissertation to type) he recommended getting a voice activated program on my computer so it would be easier- (seems his mom had PD also). As great as that sounds, I felt that in the end keeping my fingers moving was actually better for me. We often think of the big muscles we need to exercise but forget the small ones like fingers, vocal cords, etc.  After months of searching I found a local PT who deals with PWP, but I was her youngest by far. She not only stared me on exercises and stretches to keep my body ahead of the PD but also made me do tasks like sort buttons, pick up washers and put them on a dowl, shuffle and deal cards and play games that worked my fine motor skills. I went home and stared finding things to address all my exercise needs.I knit, crochet, garden, hand pull weeds and paint, do household repairs. I even do brain games and puzzles to keep my brain clear. I also sing, very badly, while driving to work my vocal cords and associated muscles. I am constantly looking for things to keep me moving so if you have any suggestions, please share- I think a lot of others would benefit from the ideas. Thanks for the post that got this topic rolling.



#39 Brad24

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Posted 16 December 2013 - 12:49 PM

I am so glad someone started this thread. I feel sometimes that I talk about exercise too much. My MDS has told me to do the most strenuous exercise I can do and keep my heart rate up. I love to lift weights, jog and do yoga. My MDS told me and I believe her that strenuous exercise is the best at delaying progression of our disease. With that being said you have to train at your fitness level. I have been exercising & doing strenuous physical labor such as cutting firewood for @ 25 years. Now if you are new to it you can't expect to
keep up with those who have been for years. There is no disgrace in it. The important thing is that you do what you can do and progress.

I hope everyone tries some form of physical activity and I think you will feel better afterwards. It may be only stretching out to start. Remember do not overdo it.
DETERMINATION "In the heart of the strong shines a relentless ray of resolve...It cannot be stopped, it cannot be controlled, and it will not fail."

#40 Annikin

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Posted 16 December 2013 - 06:19 PM

Yesterday I had a chance to do a good thing for both myself and my neighbor's 8 year old son who has a lot of toys but no kids his age to play with- he needed someone to throw a football around with so I stepped in- now growing up with a dad who was a baseball coach, I learned to throw like a boy despite my slight build- much to my neighbors obvious delight- I also have good aim . We stayed out til dark and after I got warmed up it felt pretty good. He got someone to play with and I got some much needed fun and exercise. I am sore as heck this morning but it was so worth it!  Makes you wonder if this is why PD does not affect kids! :)






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