Exercise with PLS

[LinCan]

Hi! I have UMN symptoms, in my left leg with some hyper reflexivity showing on right leg and left arm. I walk with a walker due to balance problems. Symptoms started probably 2 and a half years ago. EMG on left leg, left arm and back clear so far. Neuro said "probably" PLS, but not definite. What is the advice you have received about physiotherapy and exercise. Could I do mild strengthening of legs and arms along with my core or would this be harmful. Any advice would be appreciated, as I try to get the right balance.

 

[johnnyliverpool1]

well i can say that exercise does me in........thought i was unfit so pushed hard to get fit and put myself through the grinder to eventually realise the muscles dont like it.........theres a price to pay when the muscles aint getting the right messages...moderate exercise is good...though even then the price is pain....find whats best for you by trial and error....doing no exercise at all will be extremely harmful to you...........good luck johnny

 

[LinCan]

Thanks Johnny! What did your doctor advise as to physio? I guess I'm kind of lucky so far, my energy is still pretty good most days depending on sleep. I just find that since my physio stopped, pending a "diagnosis", I seem to have diminishing strength in my legs. This may have happened anyway, but moderate physio seemed to help me.
Has anyone been cautioned with PLS to avoid all strengthening exercises?

Thank you for your help, as I have no guidance from a neuro; we don't have one here.

 

[golf4kev]

I find that after physical therapy, I feel a bit more limber. Moderate exercise is great for you, but try not to be alone when doing. Lighter weight and more reps is the way to go. Therabands are great also. I have major balance problems so I prefer to have assistance when I do exercise. Unfortunately I am pretty much on my own so assistance is not always available to me. Stretching is SO important. I am looking for a floor bike that is low so I can get on and off easier. I also use a cane and a walker to get around.
Keep up the fight and goodluck.
Kevin G

 

[old dog]

This was one of my questions a year or so ago. You might get some information on an old thread. I agree with Johnny that some exercise is absolutely essential. I try to do about 15 half pushups (the kind where you stand and push up off a countertop) and 10 to 15 squats (holding onto a bar). I also ride a recumbent bike about three times a week for 5 to 7 minutes. I find that if I do more exercise repetions or ride the bike for a longer time, my muscles and/or joints give me fits. It seems that finding out what one can do without suffering undesirable side effects is a matter of trial and error.

The physical therapy person at my ALS Clinic recommends mild stretching and range-of-motion exercises.

TxRR is a weight lifter.

 

[billbell52]

It really depends how much your impacted by PLS. I exercised most of my life. I went to gym 4+ times a week. Once my balance was impacted I stopped strength exercising and continued to do walks until I was concerned about falling. The physical therapist recommended stretching exercise. Exercising will not help your balance. Balance uses a different set of muscles/nerves. I found pool exercise to be the best. I can exercise and not worry about falling. I use a life vest for safety. I am confined to a wheelchair now but I can still "walk" in the pool by holding on to the edge.

 

[bluesea]

welcome lincan,
i agree with all. movement is critical. easier said than done. i went through a very long stretch where i was couch bound. to avoid pain and it was too damn frustrating, my limbs, hands body don't cooperate. being sedentary made things MUCH worse, exacerbated stiffness/muscle tension. i gain more fluidity in movement when i move regularly. after periods of immobility, it takes enormous effort to move and i'm very slow. for example, like many the first few hours after waking are the most difficult. i can't shower in the am, walk like tin man, legs very weak, take a few steps and need to lay down. i tried PT just once. therapist refused to work with me because simple movements caused too much pain. i prefer to exercise/move on my own. i take advantage of moving my body or part of body when i can. it really helps. i was a lap swimmer and look at water with longing but i can't swim or even walk or putter in water. my arms shoulders hands dont work in water even walking is more of a strain than on land. my walking is erratic but at times i can walk pretty well unaided and that's what i do to move my body. it sounds like that may not be an option for you. i've never been cautioned against strengthening or stretching or mild excercise just the opposite. i think it's a matter of doing what u can when u can. i wish u all the best!

 

[LinCan]

Thank all of you for your kind replies! It helps me to put things in perspective, and gives me some ideas to try a bit at a time. I think I might try the water as they have a ramp and a lift here, but I need help in the change room, for extra stability, so that may not work. I guess not every size fits all, so you have to just try things out gradually, but not stop moving, if possible. I really admire and respect all the members here and their courage to face each day. It makes me try a bit harder to know that there are others facing tougher times.
I pray for treatment for these diseases to happen soon - treatment and a cure.

 

[LinCan]

Hi! my thank you gone to moderation!

 

[traveler1]

Hi LinCan & All!
I'm a big fan of physical therapy and exercise. I've been going off and on since my symptoms started four years ago, but I never really felt like it made much of a difference until my latest stint. I think the difference is that in addition to the balance training and the stretching, I now spend a good deal of time on the weight machines. I don't lift weights, but I do use three different machines to strengthen my legs, then I finish with a ride on a stationary recumbent bike. I started at five minutes and now I'm doing twenty minutes for about 3 1/2 miles (the ipod really helps!). I'm also able to walk two or three miles at our local nature center again.

I know that in theory we PLSers aren't supposed to be able to build muscle, but I'm definitely stronger. I don't know if I'm strengthening affected muscle, or just strengthening the unaffected muscle that I still have, but either way, it's a good thing! And a big bonus is that my functional balance is also better now that I can call upon my leg muscles to help out in tipping emergencies.

Obviously everyone is different, but it sure seems to me like most of us are better off if we exercise, within reason, and do our best to move what we've got. Cheers! Lauren