Combatting dyskinesias: I've recently... - Cure Parkinson's

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Combatting dyskinesias

Joanne_Joyce profile image
35 Replies

I've recently discovered something that seems to be significantly reducing my dyskinesias. I've discovered that if I faithfully follow my 10 minute regimen on my stationary bike (with 3 30 second bursts of High Intensive speeding) I hardly notice dyskinesia the rest of the day. There was a period of about two weeks when I decided to bike in the evenings instead of the mornings and during that period I wondered why my dyskinesia was so bad during the day. But when I resumed my exercise in the mornings I was almost dyskinesia free again during the day.

I hope this helps others with the same problem.

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Joanne_Joyce profile image
Joanne_Joyce
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35 Replies
laglag profile image
laglag

Great!

mikaele profile image
mikaele

Ive been telling people that for a few years. Except I use resistance training. It does help and the hard you work the more it helps

Beckey profile image
Beckey in reply to mikaele

What kind of resistance training?

mikaele profile image
mikaele in reply to Beckey

Resistance training I use is weights. But you can use bodyweight, trx, bands. After having to retire from my job as a paramedic, I became a personal trainer, now I am a master personal trainer / nutrition counselor. I am specializing in training for people with pd because of how awesome it made me feel. I hope it catches on, I know it's hard to get motivated. But it's worth it.

Beckey profile image
Beckey in reply to mikaele

Thanks, mikaele. I work out with weights all the time. I didn't know it had value in terms of PD!

Joanne_Joyce profile image
Joanne_Joyce in reply to mikaele

Mikaele, you are an inspiration to us. Thanks.

Beckey profile image
Beckey

I wonder how cheaply I could get away with finding a used bike?

in reply to Beckey

Hi Beckey,

I found one at a used exercise place for $65, works well, play it again sports.

Didn't you get DBS recently or am I mistaken? I meant to ask you where?

Thanks, Suzie

Beckey profile image
Beckey in reply to

I thought I was going to, but this has been delayed since the neuro I see said there were some abnormalities they couldn't figure out in my recent DaTscan. :-(

Sounds like a reliable bike setup should be available for not too much $$! That's great! Thanks.

Shelli-Shell profile image
Shelli-Shell in reply to Beckey

Goodwill or Craig's List-- you would be surprised. People just want to get rid of them. Or purchase a cycler that is just the pedals and you can adjust the resistance.

in reply to Shelli-Shell

Hi Sheli, I bought one for 65 at play aat again sams, and has adjustable resistance. I like it, put it on my back porch for the scenery ;)

but the bursts of 30 seconds x3 got my tremors going wild today, so Im starting the day with meditation and gradually increase exercise.

jillannf6 profile image
jillannf6

IF I HA D A BIKE I WOUDL GIVE IT A TRY - TA FOR THE TIP

LOL JILL

:-)

JohnPepper profile image
JohnPepper

Hi Joanne. I am sure you already know that dyskinesia is caused by too much levodopa medication. So, if you reduce the meds the dyskinesia should reduce as well. But that is not always possible. You are lucky to have found out about the bike. Have you tried FAST WALKING? That has been proven in proper scientific double-blind studies to be able to Produce a substance in the brain called GDNF, which repairs the damaged brain cells. If you were to do even 10 minutes to start with and walk as FAST AS YOU CAN every 2nd day, you will be on your way to much improved health. At the end of 2 weeks you can increase the time by 5 minutes and do the same every 2nd week until you reach 1 hour.

Then stick to the 1 hour and try to improve your time and distance until you reach your peak.

In order to measure your fitness you should keep a record of each walk and record the distance travelled each time. I drive my car to the point where I finished the walk and work out the time per mile or kilometre from that. It is very important to do this as the improvement in your condition does your self confidence a lot of good.

If you do try this I wish you lots of luck. I have been doing that since 1994 and I have not needed to take ANY PD. MEDICATION SINCE 2002, that is 13 years now. I no longer look as if I have Pd. but I still do, but manage to live a 'normal' life at the age of nearly 81.

Good luck!

John

in reply to JohnPepper

Hi John,

I have been doing 30 minutes every day for months and haven't seen much difference, by that I mean tremors. Do you think doing fast walking every day is too much instead of every other day?

Suzie

Donzim profile image
Donzim in reply to

Not just biking but forced exercise biking where the bike is motorized and goes faster than the patient alone can go. It must be the effort of both the bike and the patient..check out bike study at Cleveland clinic hey jay Albert, md. We rigged up a

Battery driven bike on a stationery stand. My husband can do 55-60 rpms by himself but the bike raises it to 80-85 rpms which is the point at which symptoms improve. Biking alone is good but it will not change PD symptoms like 80-85rpms for 30-45 min 3x a week on a rigged bike. Read about Alberta work.

in reply to Donzim

Thanks Donzim, not that handy rather shaky and theracylces too expensive, so I will have to stick with my stationary. Good info

Donzim profile image
Donzim in reply to

Theracycle does not do what I described. The bike must work independently and the rider must work independently. If the rider can only do 50rpms, then the bike must go 35rpms to get the rider up to 85rpms. This is called 'forced exercise'. It is at 80-85rpms that improvement in walking, tremor and digital dexterity is evident. Yes, it is a project to rig the bike so it registers rpms but I found a sculptor online in CA who liked to build bikes and he gave me the directions. I love the net! The hardest part is getting up and sitting on the bike.

Coblrman profile image
Coblrman in reply to JohnPepper

I think the main thing to keep in mind about walking as your choice of exercise is that the motions and muscles that benefit the most from your exercise are the ones you use the most. Since walking is or becomes the number one motor issue for most of us it only makes sense to focus there. I know when I went back to weight-lifting my arms were both strengthened and the connection between my brain and arms also benefited. Overall I felt better but I didn't see the same benefits elsewhere since I did not really work the other muscles. Most everyone I knew commented about the visible changes in my arms and the strength I gained. You can't do that without reconnecting the brain to the arm muscles.

Joanne_Joyce profile image
Joanne_Joyce

Yes, John. I realised this was a possibility when my new Doctor increased my meds in August. But the benefits of the new meds far outweigh the slight discomfort, especially now that I have discovered the positive effect of my morning bike regimen.

Maybe you forgot that it was due to your inspiration that we made a walking path in our yard. Now that dry season has come (here in Nigeria) I have resumed my walks on my path again. It wasn't possible during the rains.

All the best,

Joanne

Hi Joanne thanks for the tip. Is that a total of 3-30 sec bursts or are you using the full 10 min?

Suzie

Joanne_Joyce profile image
Joanne_Joyce in reply to

Hi Mtnsream, It is actually 10min 30 seconds. Within that period I have three 30 second bursts. The first is usually after 3 minutes so have a chance to warm up.

in reply to Joanne_Joyce

Thanks for the clarification Joanne

Donzim profile image
Donzim

Check out the Cleveland clinic forced exercise bike study...super interesting.

Bitsy profile image
Bitsy

Have you tried biking morning and night?

Joanne_Joyce profile image
Joanne_Joyce in reply to Bitsy

Hi Bitsy, I have thought about it but I'm less motivated at night. Thanks for the suggestion. I know it is a good idea and I'll try.....

Joanne_Joyce profile image
Joanne_Joyce in reply to Bitsy

Bitsy, I thought about you last night when I had to jump on my bike for the second time. I had had dyskinesia most of the day and by late afternoon I was feeling quite uncomfortable. I couldn't imagine what happened until I remembered that I had cut my morning bike exercise short by almost 2 minutes because I was running late. So I had a good evening workout and the dyskinesia stopped. Now I know better than cut my morning workout short and I sure had motivation for the night one!

Bitsy profile image
Bitsy in reply to Joanne_Joyce

That's great news Joanne and I appreciate your experience because I have learnt something too - mornings and the amount of exercise seems to be important. Happy cycling xo

JohnPepper profile image
JohnPepper

Hi Everybbody. I don't want to go on and on like an old gramophone record (Do any of you remember what a gramophone was?). but I have to get you all to understand what this FAST WALKING is all about.

When we WALK FAST for a prolonged period our brains produce a substance called GDNF (Glial Derived Neurotrophic Factor) which REPAIRS THE DAMAGED BRAIN CELLS.

YES! the brain has its very own REPAIR KIT!

If you walk casually or for short periods of time it does absolutely nothing for your brain, which is where our problems all lie. If you do walk fast but don't do it for a sustained period, it does not work.

YOU MUST WALK FAST FOR AT LEAST 10 MINUTES TO GET ANY RESULT AT ALL! The best result comes from walking fast for 1 hour, 3 times a week. NOT EVERY DAY!

Why this works is because when we walk fast, which is not normal, our brain thinks that we are running away from danger or we are fighting. When this happens we tend to get injured and we would not have survived as a species if we were not able to repair damage caused by this.

You may think that you are unable to walk fast for 1 hour. But you must start for whatever period of time you are capable of and build it up slowly until you get to that 1 hour. I recommend starting for 10 minutes for the 1st 2 weeks and every 2nd week add another 5 minutes on until you get to 1 hour. Make a record of your walks and you will see how much better you keep getting and that gives you the ability to do more and go faster.

Don't settle for less!

Good luck

John

Bitsy profile image
Bitsy in reply to JohnPepper

Hi John, fasting also produces GDNF and when I fast I have a good day Cheers Bitsy

JohnPepper profile image
JohnPepper in reply to Bitsy

Hi Bitsy. That is very interesting. Do you still take your meds on the days you fast? Have you told your neurologist about this?

John

zawy profile image
zawy

I see comments trying to determine "what's the best exercise". The best exercise is the exercise you will continue doing, which means whatever exercise you enjoy the most, in whatever place or time you prefer. But it is very interesting that Joanne says she needs it in the morning to prevent problems during the day. I think exercise before bed should help with sleep, so I try to do it before bed and immediately upon waking, and even a 3rd time in the middle of the day.

I really like the recumbent stationary bicycle. More comfortable and I can read, watch TV, or listen to an audio book while doing it. Jim Rogers does TV financial interviews while doing his 45 minutes everyday. I like my Schwinn 220, and now they have a Schwinn 230 for $300. Marcy has one for $160 new. I would definitely try them out first at Sears, Sports Authority, and Dicks Sporting Goods.

But competitive basketball I think is the best. The bike is not ideal because it is not using your balance and improving your balance will reduce anxiety. Anxiety and balance are intimately related. There's deep brain circuitry that processes both, probably having to do with people and primates needing an immediate instantaneous feeling of anxiousness if the balance needs correcting to prevent a fall. Higher level processing is not fast enough to optimize balance, as robotics engineers trying to get a device to walk know. So the same circuitry processing anxiety and balance makes sense. They've known for a long time inner ear problems can cause both balance anxiety problems, but it took forever for papers to mention this in PD. So walking is probably better than stationary or even regular bikes.

For strength training, you can just get a few pairs dumbbells, and get a lot done. For legs, just going up and down stairs is a lot, or stepping up on a metal chair or coffee table. 5 to 7 minutes of stairs or stepping up on something will wear out most people who have not been exercising, and burn as many calories as walking a mile, and builds more muscle.

youtu.be/HbMLiXPIYdI

JohnPepper profile image
JohnPepper

Hi Hikoi. I am not all that cognisant of the term spamming. Do you mean unwanted material or advertising or what?

If you think that I am advertising my book with all the messages I post then you are wrong. I only suggest to bloggers when they ask questions to look at my website for more information or at my book for e full story.

I am trying very hard to make patients aware that what I have done to reverse my symptoms has been proven to work for everybody who has tried doing it properly. That is more than any other method of dealing with Pd.

I am not into semantics I am only interested in helping patients to get better. FAST WALKING COSTS NOTHING! How many people are telling us to do various other things that cost plenty?

I suspect your motives Hikoi.

John

Hikoi profile image
Hikoi in reply to JohnPepper

You had already written this info on this thread.. I'm sorry that you suspect my motives. People will disagree because we all have different points of view and they will complain about the repeat of information, it does not mean anymore than that.

How did you like the recent WPC video on exercise Roy posted yesterday?

JohnPepper profile image
JohnPepper in reply to Hikoi

Hi Hikoi. My apologies! I seem to be a little defensive these days for some reason. This thread has become a bit too long and I forget what has transpired. I must be getting old. It is my 81 birthday today and I'm about to go for my walk. Then I'll come back home and make breakfast.

I have not had time to listen to the WPC video yet.

John

Joanne_Joyce profile image
Joanne_Joyce

I forgot to mention that my bike is the kind that has vertical bars that go up and down when I pedal. So when I hold on to them my body gets a good shaking. I suspect this contributes to its effectiveness in combating dyskinesia.

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