Does exercise slow progression?

[old dog]

I am wondering what types of exercise others with PLS find beneficial. My insurance pays on physical therapy but the co-pay is $35 per visit which prohibits a person on my budget from going very often. What kind of exercise can be done at home without assistance?

I saw an old post that mentioned the inversion table. I find this helps me more than anything, but, because I'm short I need help to get on the darn thing.

 

[lizzie11957]

Yoga, wide range motion, walking, deep breathing. All done gently but consistently.

 

[trfogey]

First, you should consult with your doctor concerning any kind of exercise regimen that you might want to attempt. We don't know what parts of you are affected by PLS and which parts aren't, so all we can give you is very general advice, and that advice would be to concentrate on activities that will help you maintain flexibility and range of motion. Beyond that, you really need input from your doctors and from physical therapists who can design a program focused on your particular needs.

 

[Bad Balance]

Although I agree with trfogey completely, I am on both sides of this issue on exercise. Some folks say that you can simply "use up" your remaining muscle capacity and in a sense this is true. Remember depending on the amount of atrophy and muscle loss in any particular part of your body, you will not regenerate and increase muscle mass any longer....no body building for us.

I still have pretty good upper body strength and I was going to yoga with hand weights for several months. This really helped me until I realized that it was taking the entire weekend to recover. Now I am paranoid about my spacicity and how long my strength will remain. My arms and hands are becoming involved now, so this stuff does progress in spurts and lulls.

I do believe that gentle yoga and stretching are best. My doctor is a bit jaded, I think. He sees literally thousands of ALS patients and knows where we all are heading. He says, "do what you like". Check with yours.....some doctors are adamently opposed to exercise and others believe it helps.

- Jerry

 

[old dog]

Thank you, lizzie, trfogey, and bad balance. I plan to ask to see a physical therapist at the next ALS Clinic in my area. In the meantime, I will continue walking (with a rolling walker) and stretching. I find that pushing a shopping cart at the grocery store is also beneficial. Works just like the walker and the weight adds a little strength training. I also still have fairly good upper body strength but am experiencing some awkwardness in my arms and hands. I agree that this syndrome progresses in spurts and lulls. Can't ever be sure what you are going to wake up to.

At this point, my EMG did not show any lower motor neuron involvement and my doctors don't think I have much muscle atrophy--hence the PLS diagnosis. As far as muscle atrophy is concerned I can see it, but my doctors don't know what my strength level was three years ago. I have commented that although my weight is about the same, I am much fatter because of poor muscle tone. It's hard for me to determine how much of this is the disease and how much is because of reduced activity. When one physical therapist asked what my goal was, I told him I wanted to be able to lift and carry 40 lbs. He told me in a nice way that I was out of my mind. About 15 months later, I have
discovered he was absolutely right. I cannot lift more than 10/15 lbs. without discomfort and cannot really carry anything due to poor balance.

 

[TxRR]

I disagree. I do bodybuilding and have put on alot of mass. I fluctuate in weight from 200 lbs. to 215 lbs. depending on my diet. I weighed about 170 lbs. when I was diagnosed with PLS in 2007 even though my symptoms date back to 1998. I currently bench press 315 lbs. on a good day. My legs are weaker but I still put them through the same rigorous workout just less weight.

Recovery time on a healthy person is about one week. That is why bodybuilders only workout one body part per day for the week. This gives that body part one week to recover.

An example would be:

Monday - Chest
Tuesday - Back and Biceps
Wednesday: Shoulders and Triceps
Thursday - Legs
Friday - Abs
Sat. and Sun - Off

So don't throw in the towel just because your a little sore for a couple of days after a workout. Hell, most bodybuilders can't even walk the next day after a heavy leg workout. Just remember to eat alot of protein, take a multi-vitamin if possible and the MOST IMPORTANT is TO STAY HYDRATED! This will reduce muscle cramps and spasms. Drink about 8-10 glasses of water/sports drinks a day. Sport drinks provide electrolites which hydrate the body much faster than water.

I consulted with my doctor about bodybuilding when I started and he quickly shot that idea down. I ignored him and have never felt better. He's astonished everytime he see's me.

Good Luck.

 

[Jim Mulligan]

While many people here are "glass half full" kinds, I am a "glass half empty" kind, and I don't think exercise or stretching or whatever makes a damn bit of difference in terms of progression. It might make you feel better, but I don't think it has any impact whatsoever on progression.

I was very very active when I was first diagnosed with PLS. I hiked mountains every weekend, surfed every day during the week, commuted to work on a bicycle... it didn't matter. And why would it? When you think about what PLS is, the Upper Motor Neurons dying, why would exercise have any bearing on that?

Whatever *causes* PLS, it sure as hell ain't lack of exercise, or else me and others never would have gotten it.

Jim

 

[Alyoop]

I agree with Jim completely, exercise can't slow down progression of PLS. How can it? It can however strengthen unaffected muscles and help strength in affected muscles. Just because your quads may be affected, it doesn't mean that surrounding muscles are equally affected. Also some people have a huge amount of spasticity therefore could not dream of doing exercises that others can do. We are all individuals with varying degrees of spasticity, weakness etc.

The actual question asked here, can only be answered No! It can't slow progression but can improve mobility, decrease disability, similar to a person with a stroke improving with exercise and PT.

 

[johnnyliverpool1]

well ...this exercise thing....i was an athlete for 20 yrs...got paid too....so when the spaz hit...my first thought was exercise my way to improvment....i was in agony for months but am used to pain barriers and it was gonna get better want it...no it wasnt......eventually i found that very light exercise was the answere to feeling better than no exercise at all..pumping iron..jogging ..walking riding a bike..use gotta be extracting the michael........my mates who did precious little exercise in there lives are still playing golf....others on new knees and hips ...the spawny sods...i used to beat em easy...........but am not jealous..........honest johnny//

 

[old dog]

Thanks to all who have answered. I guess I am lucky that this syndrome didn't really hit me until age 70. I now realize I probably have had symptoms for as long as 20 years. Even as a child, I occasionally choked on air for no reason and have always had an unusually slow speech pattern. My dentist told me many years ago that I had a lazy tongue. My theory is that because I have been quite healthy most of my life, my system was able to resist the disease until something triggered it. I believe a severe case of flu, a stronger-than-necessary dose of lisinopril (for high blood pressure), and stress may have been contributing factors.

My father and grandfather both lost the use of their legs later in life. My father developed problems following a severe head injury when his pickup collided with a train. Some of his symptoms--loss of emotional control, enhanced startle reflex, and changes in speech, as well as difficulty walking, were similar to mine. I believe my grandfather suffered a stroke but am not sure as he passed away in 1945 or 46. I can remember that he had upper body strength but his legs wouldn't support him.

 

[TRB1]

Excercise cannot slow this disease but it can help in other ways. The problem with PLS is that the message is just not getting down to the bits of the body that need to hear it. The bit that needs to hear it is probably functioning quite well but just hasn't received any instructions properly. If the muscles are not used they will deminish in size and flexability which will add to unsteadyness and weakness. Keep excercising the muscles and they will at least help a bit with the problem.
Its a bit like having a car with a duff battery. If the starter wont turn the engine over it wont work, and if you leave it like this for long enough the engine will sieze up through lack of use.

 

[Bill43]

I liked the way my neuro at the Mayo Clinic put it when I asked him if exercise would help. He said "do you like to exercise", I said no, he said "then don't"

 

[Alyoop]

TRB1 that's a good clear and understandable explanation. Exercise has been my life saver
Bill, that's goos as well, but relates to ALS far more than PLS. Over exercise in ALS is not a good thing at all, just important to try and keep a good range of motion while you can, but in pls it can help keep muscles from shrinking due to lack of use and support thecless affected muscles.

 

[John1]

The nostrum for ALS that is trotted out by most neurologists is to avoid exercise other than range of motion activity to preserve existing muscles. More vigorous exercise may be downright destructive. This mantra seems to be based on no medical evidence. In fact to the contrary, all of the experiments I have seen (based on SOD-1 mice, not PALS) indicates not only is exercise not harmful but may be beneficial. So I would not seek the advice of your doctor on this question unless s/he has actually looked into the issue and bases his opinion on other than common medical knowledge. I suggest you Giggle topics like "ALS exercise mouse wheel" and read some of the research. I bought a recumbent exercise bike/rowing machine several years ago based on some early research and have never looked back. More recent research is equally, or more, favorable in terms of the benefits of exercise.