physical exercise ....pros and cons

[bowser]

In May of 2012, at the ALS Clinic, I was shown what I should do to exercise my wife's legs and arms and the therapist stated it was important.

I gently raised Margaret's arms and legs every day but noticed that DESPITE my diligence, they were increasingly getting stiffer.

Then, in the afternoons, my wife would cry while in her wheelchair and point to her legs.
At first Ibiprofan helped, then a prescription pain killer, then a STRONG pain killer.

I called the ALS Clinic and was told physical therapy WAS important, but I disagreed with that for ALS patients and quit all exercizes I was doing for my wife Margaret.

Within 2 weeks she no longer needed pain killers whatsoever and has NO PAIN.

Yes, her legs are getting more stiff, but they were when I did exercises on them plus the pain.

Anyone else experience the same thing where the advice given was harming rather than helping ?

 

[Katie C]

We dropped physical therapy fairly early on. It was a cost vs benefits thing... Glen would be exhausted, and as you've said, the stiffness was relentless anyway.

 

[frankb]

Stretch exercises appear to still help me. However, I gave up on my recumbent bike (which I really enjoyed) because it resulted in a major increase is fasiculations (sp?) and severe muscle cramps. Anyone heard how the medical trial regarding exercise (relative to ALS) is working? ?

 

[ottawa09072013]

I have been told by the clinic that the PT exercises are good for pain and swelling although I still have pain. What I have noticed that the PT exercises reduces the swelling at my joints that are no longer used. My joins were initially swollen and now they are no longer. I was not given any information that it would reduce the stiffness.

 

[Annie's Phil]

Annie found a judicious amount of range of motion exercise to be very helpful. As her condition progressed muscle imbalances between muscles and their corresponding antagonists caused painful postural abnormalities. I did gentle stretching to try to restore more normal posture and joint mobility.

Hospice was supposed to be providing ROM, but never did. So I had to recover some lost ROM, which she found a bit painful initially because we were stretching muscles that had gotten contracted over a prolonged period. But after we got them stretched out a bit at a time her comfort substantially improved. She always welcomed ROM exercise. Resistance exercise was definitely not part of the regimen.

 

[pearshoot]

I do a series of rom every day and find it necessary to push into pain zone at times to stretch muscle contractions. the test on exercises requires 60 volunteers and like must drug trials at this time it still hasn't filled. only going on at four locations. I am so disappointed in lack of volunteers, pals are the ones responsible to find out if something is going to work and needs to be done with hast

 

[cervus]

ROM helped my husband to no end. Our caregiver from Home Care was trained by a physiotherapist that had just the right motions for ALS patients. It shouldn't hurt but rather loosen up the joints a bit. Take care. Yasmin.

 

[Barbie]

I do ROM every day on my husband. His upper body is loosy goosy but his legs are tight and contracted. I admit I pay more attention to the upper body because it is easier to do. His legs, they are so tight that I just try to gently stretch and move around. it is hard work with the tight muscles and it would be easy to go to far and maybe injure them. that could be why she was having pain. maybe try again, and just move them a little more gentle and not quite as far. over time, it would be good for her.

Phil, My husband has had such contracture in his jaw that his teeth moved. I try stretching his jaw as well, just to keep it from continuing to get skewed. I don't want any teeth to break--I don't know How a dentist would be able to help him with it so clamped up!

 

[affected]

My PALS reports that he gets a lot of pain relief from massage followed by ROM for his shoulders.

I have no idea if it will always continue to benefit him the way it is now though. With this disease it seems like just when you get something working well, everything changes and you have to work out new strategies again anyway! grrrrrr

 

[AfraidButNotAlone]

I find that my legs (hamstring area) cramp if I am stationary for too long. I get up and move around. I either walk for about 10 minutes or, if I can't, I simply move my legs up and down as I stand. It helps with the cramping, but I am always tired afterward. The fascics don't seem to be affected by this type of exercise for me.

 

[HalsWifeFran]

Annie found a judicious amount of range of motion exercise to be very helpful. As her condition progressed muscle imbalances between muscles and their corresponding antagonists caused painful postural abnormalities. I did gentle stretching to try to restore more normal posture and joint mobility.

Hospice was supposed to be providing ROM, but never did. So I had to recover some lost ROM, which she found a bit painful initially because we were stretching muscles that had gotten contracted over a prolonged period. But after we got them stretched out a bit at a time her comfort substantially improved. She always welcomed ROM exercise. Resistance exercise was definitely not part of the regimen.

My experience with Hal has been very similar to Phil's with Annie. Hal is now over four years into his ALS, and has almost no active controlled movement of his body. But the pull on his joints as his muscles weaken or spasm has been very uneven. Gentle passive ROM exercises has been very helpful in maintaining reasonable passive joint mobility. And that can help with finding less uncomfortable positions and lessoning risk of pressure sores, etc. Hal likes me to do some passive ROM on him at least twice a day. As Phil said, resistance exercise is a whole different issue, and back when Hal was able to do those, they were NOT helpful.

 

[dragonflydi]

Tom's aides and I do gentle ROM and stretching exercises for him three times a day and it helps him a lot with the pain and stiffness. He was starting to get frozen shoulder and finger contractures and we managed to nip them in the bud. For the past three months, Tom's daughter has been living with us in order to help out with her dad's care. Not only is she an angel, but she is also a licensed massage therapist and she has been massaging him every day. He feels so much better and there's been a dramatic improvement in his flexibility and comfort. Unfortunately, she has to go back to Phoenix in a few weeks but she is teaching me a few massage techniques. Tom entered Hospice home care last Friday and they have a massage therapist on staff who can come out once a week to work on him, too.

 

[Bad Balance]

My experience is that if you don't use it you will loose it. You will anyway just sooner.

I find that if I am really rested, my strength is better...now if this darn incontenence would go away

 

[Flyby]

Sorry about the incontinence Bad Balance. I have it too, Got a Foley catheter but after3 mos of infections I went to the supra-pupic. No bladder trouble now. I only get ROMs 3 times a week. They are very fatiguing but I feel it if I don't do them.