Hi folks. I used to do 50 mins hard pushing on the stationery bike but these days only seem to be able to manage about 25/30. Naturally my concern is that the disease is tightening its grip but I want to respond proactively to this. Has anybody managed to turn this phenomenon around and if so how? Thanks for any advice.😊
Decline in exercise tolerance : Hi folks... - Cure Parkinson's
Decline in exercise tolerance
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jeeves19
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Well you know what I'm going to say..... Rock Steady Boxing. It helps you get stronger & helps your walking, talking, balance & your attitude/overall mood gets better. We do learn so much more than just punching a bag, we do a variety of exercises. If you have one near you, there are now more than 866 affiliates all over the world, so it has to be working somehow.
I challenge you to try it 3 days a week for 6 weeks & give it 110 percent & I know you'll feel & move better than you do today.
Debbie (Boom Boom)
I have never heard of this. But looks interesting on utube. Gonna try it!!!
Hi Jeeves. I am very loath to ask the simple question: Have you tried "Fast Walking"? It may seem stupid of me to ask this, seeing that you have been doing so much on the bike, but fast walking does something that no other exercise appears to be able to do. It produces GDNF in the brain which REPAIRS THE DAMAGED BRAIN CELLS!
What scientific proof do I have of this? It's out there somewhere but what have you got to lose by trying it?
All you have to do is walk as fast as you can for as little as 10 minutes every second day. Then, at the end of 2 weeks, add a further 5 minutes and every second week add another 5 minutes until you get to one hour; then tell me how you are feeling.
If you don't do this, you really are not looking for a solution to your problem.
I keep trying this but the painful muscles retard the speed. Balance is also lost sometimes but yes it's a good suggestion to atleast try
Magnesium and hydration along with cherry extract for sore muscles. Trace minerals. Be sure your potassium levels are good so you don’t get potassium paralysis from exercise. Electrolytes...powdered from PureCaps. CBD oil and gel is marvelous! I use Natures Script...one must be careful of the brand...lots of poor ones out there.
What cherry extract do u take? Do u just take it every day and how much do you take? also i have read warnings about taking potassium. how much do you take? tnks for info!
You probably need to get your potassium levels taken. That said, my husbands appeared normal but by sheer accident we gave him Gatorade one day before rehab and it was the first time he didn’t freeze up 20 minutes after exercising. As tho he were paralyzed. After 10 years of complaining about it to every doctor, we discovered it was the electrolytes in Gatorade! Imagine. Later a naturopathic doctor commented, ‘oh, yes...we see a lot of potassium paralysis cases’. Potassium needs monitoring but you can buy electrolyte powder from PureCaps. Easy to take. Husbands cardio guy told him to take it 2x daily. Probably any cherry extract from a reputable brand works. I use PureCaps. Not like you can overdose...just take it according to directions on label.
Hi MerckK. Did you begin the fast walking with a maximum of 10 minutes every second day, as recommended. If you are very fit then you can start at 20 minutes every second day. If you exceed the time and you are not fit then you will pick up injuries and is not recommended.
I feel very fit and walk for an hour and walk fast and run for 20 min. The only problem is the pain in my left leg muscles which I have to rub before and after walk/run
The fast walking is a specific therapy for Pd. It produces GDNF in the brain, which repairs the damaged brain cells, which is what WE NEED!
Everything else is merely exercise to keep fit.
If you want fast walking to kick in you have to build it up slowly, otherwise don't waste your time.
If you contact me on my website reverseparkinsons.net I will give you all the information, free of charge, no strings attached.
Thanks for your concern and time. Kindly give the required information and I assure you that I will follow the same religiously. I have sent all my details on your website
Thanks John.
Hi Jeeves, I hope to sear from you in a ferw months telling me how well it is working for you.
Hi john when you say every second day, do you mean one, two then walk? So not every other day but 4 times in 2 weeks?
Thanks
I am pretty sure John encourages fast walking every other day. Walk one day, rest the next day, walk again the next day...
Hi Binday. Every second day means Monday, Wednesday, Friday, Sunday, Tuesday, Thursday and Saturday. You are allowed to do it only three times a week.
Many thanks for clarification
Will you do the fast walking?
Yes definitely, i have always loved walking so this is a real bonus for me, if i am also helping PD. 😊
Hi Binday. When I say FAST WALKING I really mean exactly that. Many people think that walking a little bit faster than normal is all that is required.
You have to walk at YOUR FASTEST RATE, which changes all the time. AS you get fitter you walk faster and the goalposts keep changing.
Many people feel that it isn't necessary to keep going even faster, even though that is what is required.
When we walk flat-out our brain thinks we are in trouble and it goes into 'Fight or Flight' mode. It thinks we are running away from trouble. It produces a protein called GDNF, which means Glial Derived Neurotrophic Factor. The Glial cells are the cells killed off by Pd. Neurotrophic means NERVE REPAIR< So our brains produce our very own REPAIR KIT for Pd. That is not good news for the Drug Companies, as you can imagine. But whose side are you on?
Hi John, what bpm is fast? I like to to 120 with a metronome.
Hi Bundoran. The important goal is to walk as fast as you are capable of going.
We are all different, and there is no BPM that can tell us we are going as fast as we can.
If you can still talk to somebody else, while you are walking, then you are bot walking as fast as you can!
If you are unable to say a word to somebody else, while you are walking, then you are going too fast.
You should not be able to say more than three words to somebody else, when you are walking at your fastest possible rate.
Thanks John
It happens when the disease start progressing. Pl do an oil massage with muscle relaxant oils and spray pain relaxant on your tiring and painful muscles before exercising. Listen to work out music while exercising. You will be able to overcome your problem to atleast 75%. Good luck
Hi Jeeves try mixing up your exercise to your routine, I do weights everyday and add cardio every second day then 2 - 3 days a week I go to boxing class, in the arvo.
I get great results from this concerning my PD symptoms
Thanks.
Azza
Might timing your meds differently help? I have to take a larger dose that lasts longer in order to ride my exercise bike.
The wall , it moves slowly but insidiously closer and closer
you cant stop it moving but you can put a hell of a dent in it
Keep trying ,do the best you can, try exercising more often for less time
welcome to reality, it hits most of us eventually
Thanks Gymbag. Hope you’re coping reasonably well.
I am coping fine , the rest of the world seems to have problems ,but I generally ignore them.
Oh I forgot to mention . Lots of Sleep and a good balanced diet are what handles fatigue. Are you sure you got that covered. Maybe a fitness coach, Rock Steady Boxing would be my choice if I had one within 100 miles.
Check closely and pin down the main reason for your fitness decline. Is it due to one side becoming weaker? Or reduced aerobic capacity? Or particular muscle weakness? Etc etc. Then seek a form of exercise that targets your specific needs. All the suggestions you have received are valid, but you need to find things that work for YOU. And make it something you can enjoy!
Well done for keeping going! But it's hard to do if you don't like it.....Guess you used to enjoy the cycling when you took it up?
Experiencing similar with walking and especially the treadmill. Used to walk 52 fast treadmill minutes, then 45, now 32-35 on a VERY good day, struggle to do 15 on a not so good one. I have been experimenting with an extra 1/2 C/L prior to exercise start and adjusting exercise timing to coincide with meds kicking In. Problem is some days meds kick in far better than others. It’s a struggle. A continuous uphill bottle.
And how do we distinguish the psychological from physiological? It is WAR!
Iqbaliqbal posted an interesting article regarding forced exercise in which a machine forced people to pedal faster on an exercise bike than they ordinarily would or could. Maybe a bike like that would work for you. I know this goes without saying and it's easy for me as a fairly recently diagnosed person to say, but keep doing as much exercise as you think you can possibly do...and then do a little more. Best wishes always.
I believe there have been posts on this called a theracycle. I’ve not used one but there is a gym near me that has one. I think they are expensive to buy.
This is called ‘forced exercise’ and will absolutely help. There is NOTHING on the market which does this. Look up Cleveland Clinic Jay Albert. You can rig up a stationary bike to accomplish this.it will need a throttle and a meter which indicates rpm...that’s the clue. It is absolutely necessary for the bike to do part of the work and the rider to do part of the work...this is why using simple pedal bikes where ALL of he work is done by the rider do NOT work. The underlying principle is that some people, the elderly and those with dibilitating disease, do not have the energy to do the amount of exercise required to make a significant change in their symptoms.
The Theracycle does provide forced exercise. See their web site:
For years, Theracycle marketed their bike as helping PD and implied that it was a combination of forced and patient exercise. I could not see that this was comparable to the protocol as expressed by Cleveland Clinic’s Jay Albert.. I have seen their recent claims that they have a model which actually does provide forced exercise and I hope that is true. It is very expensive and a forced bike can be done fairly inexpensively with some modifications.
Just read their material as well as the study reported in ncbi.nih using Theracycle and although the theracycle does provide forced exercise, I am unable to verify that there is both forced exercise AND self induced exercise...THE critical factor in Dr. Alberts’ work. IT MUST BE BOTH..SIMULTANEOUSLY. Just making the patient move their legs doesn’t do it. Movement is good but only the combination of machine induced movement in conjunction with self induced movement gets the results Alberts got. Guess that’s why the results reported in the ncbi.nih report showed no improvement over the control group.
"some people ... do not have the energy to do the amount of exercise required to make a significant change in their symptoms."
This is correct. For everyone else though, "simple pedal bikes where ALL of the work is done by the rider [DO] work."
The combination of forced exercise and self induced exercise is the subject of the work done by Alberts. If you have a study which shows the same measured results with only self induced exercise, I would like to read it.
After their initial success with the small (N=10) "forced exercise" trial, Jay Alberts et al. conducted the much larger (N=100) CYCLE trial, which failed to reproduce the results of the small trial.
journals.lww.com/acsm-msse/...
Jay Alberts et al. are now conducting an even bigger (N=250) trial. Note that, in the associated press release, they are no longer using the term "forced exercise", but rather the term "aerobic exercise" is being used.
newsroom.clevelandclinic.or...
Read the study which indicated that the combination significantly improved the OD symptoms. Biking is aerobic so I don’t see that description as different.
You must have read the CYCLE abstract too quickly. Here is the key result:
"There were no significant differences between the VE and FE groups."
You are right. I can’t interpret the idea of being ‘off’ meds. I find it difficult to understand how a VE PD patient could get the rpms up sufficiently to get significant results. That was not our experience. My husband could not possibly have reached the level required for results without the addition of FE. It would only have been like a regular bike exercise which showed no improvement for him. The combination of the two was quite dramatic.
My understanding of the CYCLE abstract is that the PwPs were 'off' medication during the UPDRS testing, and 'on' medication during the cycling.
It would be nice to see a full report (rather than just an abstract), including a solid discussion of why the CYCLE trial did not reproduce the results of the initial (small) trial. However, as it is now more than 3 years since the trial ended, my concern is that an abstract might be all that we are going to get.
Well you can rig up a bike and try it...it helps or it doesn’t. In our case it did. Bought a battery driven Currie izip mountain trail on sale at Walmart, put it on a stand, rearranged the rpm stuff, added a throttle and a meter which would show the rpms and Bob’s your uncle! Hardest part was finding the rpm meter.
Many thoughts...
No two of us are alike
It’s as of yet an incurable disease of unknown causes
The worst thing to do is do nothing
Forced exercise (as performed in the rat studies) is a human rights violation.... electrodes attached to tails
The exercise events that are best are perceived as fun... endorphins!
In a brain disease it’s difficult to differentiate between physiological VS psychological
At 20 years into this process I have concluded that “use it or lose it “ is a reality as is “it’s a loosing proposition”.... like it or not. The art of living in this process is to “ not give in while not suffering every loss” ... although an occasional breakdown can be very therapeutic. Dive deep in the abyss and wallow for a while. Then come back up and get on with the good that you have remaining! Wallow in the current good for a long time!!
Hi Jeeves. My advice is to mix it up and find something you enjoy if you can. I think anything that keeps you moving is helpful. Strength training might help. Also, I find if I'm undermedicated with dopaminergics my performance suffers no matter what I'm doing.
There was a time when I felt like exercising gave me more energy but that has changed in the last couple years. One of the things I’ve learned is I’ve got to take a double dose of C/L when I’m going to be walking a lot or my meds will simply cut out on me and leave me weak and far from home.
Very well put. Thanks!
Thanks for everyone’s contribution guys. Very helpful and generous😊.
Hi jeeves,
Riding the bike speeds up your metabolism. So what's happening is your body is also metabolizing your medicine much quicker. That is why your energy drops a lot sooner. Maybe ride the bike at a slower pace and go longer.
Trouble is, that the returns seem to be delivered via fast pace?
Yes, by increasing Sinemet dose from 3 - 4 times per day. Initially I tried 4 doses only on days with a lot of exercise but my neurologist has suggested it will work better on a strict same schedule per day. He also believes restless sleep might be slowing me down in the day and is prescribing Clonazepam for use at night. I have not tried it yet. Always reluctant to take more meds, but frustrating not to be able to exercise when I want to.
Hello Jeeves
I am wondering if this "bacteria eating levodopa" could be responsible for your exercise capacity reduction:
google.com/amp/s/amp.iflsci...
"E. faecalis was the only strain of bacteria to eat ALL the L-dopa EVERY TIME converting it to dopamine in the gut"
…..
And there seems to be a molecule (AFMT) to remedy, but it doesn't seem to be available to the public:
sciencealert.com/gut-microb...
"The good news is that the researchers have already found a molecule, alpha-fluoromethyltyrosine (AFMT), that can stop E. faecalis from breaking down L-dopa without destroying the bacterium itself, by targeting a non-essential enzyme"
....
The reason I suspect this is I recall you are using a proton pump medication. I am wondering if the acid reduction caused by this medication is preventing the destruction of possible bacteria, such as E. faecalis and Eggerthella lenta.
I have very limited benefits from levodopa and important side effects (dystonia and generalized relentlessness / anxiety) which disappear when I am off Levodopa. A while back, my limited benefits dropped suddently, especially exercise capacity. I also take a proton pump medication.
Fascinating. Have you ever tried to get off the PPI? I’ve tried many times but the distress is awful. I’ve heard of people achieving this but I can’t seem to get over the first 10 days of indigestion. I often remind myself that without this addictive but useful drug that I’d probably have oesophageal cancer by now. Thanks for remembering my situation and making this suggestion😊.
I tried a couple of times to get off the PPI by skipping 1 day.
In 2013, when I had sciatica and shoulder tentinitis for a couple of years, I noticed the only thing helping was low dose Aspirin daily. But that led to stomach and gut disturbance for which my GP prescribed Pantoloc, the PPI.
I have been taking low dose Aspirin and PPI daily since then.
Every time I tried getting off, the result was PD symptoms aggravation. I think the Aspirin controls my pd induced inflammation, and every time I try to cut back, hell breaks loose...
Parkie,
I got your note. I remember the thread you asked me about, but I'm not sure if the situation is the same. Doctors prescribe PPIs for supposedly too much acid, but sometimes just the opposite is true, not enough hydrochloric acid. If you actually do have too much acid in your stomach, taking more acid will be a problem.
The method I mentioned is purported to help if there is actually too little acid that is causing the negative digestive symptoms, but your doctor would have to test you to find out for sure if the issue is too much acid or too little. This method basically adds hydrochloric acid as Betaine HCL with Pepsin to each meal to help improve digestion that is perturbed by too little stomach acid. The stomach acid also kills some bacteria as well as helping the body to break down and digest the food we eat.
Here is a link to that conversation that explains what I did when I started having heartburn, acid indigestion, bloating and general digestive discomfort. It work ed for me and apparently my issue was too little hydrochloric acid.
Here is a link to one thread where it was being discussed. You will have to scroll down the page about halfway to read a discussion I was having with Despe on the subject :
healthunlocked.com/parkinso...
Wow, I almost gave up looking for it!
Do you know if there is a natural alternative to the alpha-fluoromethyltyrosine (AFMT) molecule:
Wondering if this "bacteria eating levodopa" could be responsible for your exercise capacity reduction:
google.com/amp/s/amp.iflsci...
"E. faecalis was the only strain of bacteria to eat ALL the L-dopa EVERY TIME converting it to dopamine in the gut"
…..
And there seems to be a molecule (AFMT) to remedy, but it doesn't seem to be available to the public:
sciencealert.com/gut-microb...
"The good news is that the researchers have already found a molecule, alpha-fluoromethyltyrosine (AFMT), that can stop E. faecalis from breaking down L-dopa without destroying the bacterium itself, by targeting a non-essential enzyme"
Look at PDWarrior.com. He will be surprised. Good luck
Lots of good responses, but not necessarily focused on the fatigue aspect. As mitochondria are intimately involved in PD and exercise that may be a consideration. Perhaps a couple of shorter exercise sessions may be a way to help using different exercise protocol for each session.
My guess is that there are ample posts for boosting mitochondrial function that you might benefit from reading.
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