The Exercise Question

[emmavoberry]

I do not have ALS, but a dear friend was diagnosed a year ago, so I have been reviewing some studies. I do not mean to prescribe anything for anyone, but in reading info. in the forums and finding reference to new material about exercise. I wanted to re-iterate a link as well as add one.

First, regarding studies started at John Hopkins, projected to run a year:

Exercise: stretching the limits of ALS care | ALS Therapy Development Institute

Second, a study from the 1990's that is currently forming a basis for current trial:

http://www.udel.edu/PT/PT Clinical ...arch/ALS respiratory dysfunction exercise.pdf

Although the above link refers to a very small study conducted some years ago, the crucial feature is that its subjects used non-invasive breathing assistance to compensate while performing moderate aerobic exercise. The findings seem to suggest that this breathing assistance was responsible for the overall positive results, such as they were, while one could extrapolate that PALS who experience weakening, spasms, fatigue, and overall worsening of symptoms might a) be performing the "wrong" type of exercise b) be performing for too long and too hard c) need breathing assistance to compensate.

 

[FSHolbrook]

Swiming is a good way to get exercise for folks with als but, my Neuro definitely does not want her patients doing vigorous exercises and I can tell you that I would not be able to manage the stairs if I did exercise the way described in the first article. range of motion stretching is what she prescribed.

Rick

 

[emmavoberry]

The first link refers to information about a study of three different forms of exercise and will not slot in patients who should be prohibited from one of the forms to be studied, stationary biking or using weights, or the stairs, given their particular/individual conditions. Swimming is one of the forms being looked at as to benefits, but again, it will not be for everyone, nor does a study translate into what anyone should be doing without consulting with their own medical professional/s.

Certainly, in addition, PALS would want to access how they feel performing any kind of exercise-- as to whether or not even stretching resulted in fatigue, spasms, any worsening in symptoms. So I do not mean to suggest the study (and results are not in on it yet) should become a DIY project.

So many on this board have reported (or their CALS have) adverse reactions to exercise regimes, to chores, over-reaching, work activities alone.

Thanks for adding to this "question."

 

[hjlindley]

What even some physicians don't pay attention to is there to type of muscle contractions con centric and eccentric. Con centric is like doing a bicep curl while you pull it up against gravity. And eccentric contraction is when you are lowering the weight and the muscle is lengthening being pulled on. In eccentric contraction there micro tears. That is how bodybuilders build their muscles. There are no micro tears or eccentric contractions and swimming or water aerobics. I was a certified personal trainer on both land and water for years before I got the ALS. Once I was diagnosed I did nothing but aquatics. Every time I've had this discussion with an ALS neurologist you could almost see a light go on. They tend to think of exercises all one thing. It's not. I just can't believe that we actually heal the micro tears since the muscles are dying anyway. Just my two cents worth.
Hollister

 

[emmavoberry]

Very interesting. A relative has lupus with complications from high dose prednisone--necrotic knees, weak and painful shoulders, breathing problems--in a wheelchair--but took part in aquatics rehab program and seemed to help. Hope was helpful to you.

 

[GregK]

I just can't believe that we actually heal the micro tears since the muscles are dying anyway.

It's not so much that they're dying as they're atrophying due to lack of use.

This is one of the areas in which there seems to be no consensus...

 

[affected]

@Greg. The muscles are not atrophying due to lack of use. If this were the case, then we could simply get our PALS exercising and build those muscles back up. It is neurogenic atrophy, caused by the nerve damage and can happen fast. It is not reversible.

What we know is that if a PALS over exerts, they can in fact increase the speed of the atrophy, rather than rebuild muscle mass. Also if there is a muscle, tendon or skeletal injury, there is never a full recovery.

It is sure is a subject that seems to get quite a range of opinions, and since everyone progresses differently it is always very difficult to say whether anything one did or didn't do affected the speed of their progression.

I find it a really interesting topic, and when my PALS was more mobile I often thought about and talked about exercise, massage, ROM.

Thanks to emmavoberry for the interesting info on the use of breathing assistance with exercise.

 

[KCAE]

There is no consensus. I bike an hour a day six days a week. My SVC has not gone down nearly a year into this. In fact, it has actually increased slightly. Do what works for you and never give up.