exercise or not

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Nov 12, 2006
:-DI was diagnosed last year and mother died of this 20 years ago. My mother's case went very quickly, but mine is not. What I need to know is whether overworking and feeling tired next day is good or not good. Does anyone have any ideas or experience in what is best. Does it make a difference/ I know about walking everyday. I would appreciate any answers
Have sent off for information

Donna....I have sent off to the Indiana ALS info.org for information on exercise. I do know that facial exercise in advanced cases is suggested. Hopefully I'll get more information. In the mean time, please check the support groups links in your area just in case i can't get any info.
God Bless

I was told by my phyisiotherapist to keep on working out and the stretching exercie without over working my muscles.

DH's physical therapist has given him exercises to do with bands, nothing too strenuous and she recommends he do it at least every other day. The leg exercises give him cramps but she says to do them until he feels uncomfortable.

Kind of technical, but the bottom line seems pretty clear

A randomized controlled trial of resistance exercise in individuals with ALS
V. Dal Bello-Haas, PT, PhD, J. M. Florence, PT, DPT, A. D. Kloos, PT, PhD, NCS, J. Scheirbecker, MPT, G. Lopate, MD, S. M. Hayes, PT, MS, E. P. Pioro, MD, PhD, FRCPC and H. Mitsumoto, MD, DSc
From the School of Physical Therapy (V.D.B.-H.), University of Saskatchewan, Saskatoon, Canada; and Department of Neurology (J.M.F., J.S., G.L.), Washington University School of Medicine, St. Louis, MO, Division of Physical Therapy (A.D.K.), Ohio State University, Columbus, Department of Neurology (S.M.H.) and Eleanor and Lou Gehrig MDA/ALS Research Center (H.M.), Neurological Institute, Columbia University, New York, and Department of Neurology (E.P.P.), Cleveland Clinic, OH.

Address correspondence and reprint requests to Dr. V. Dal Bello-Haas, School of Physical Therapy, University of Saskatchewan, 1121 College Dr., Saskatoon, SK, Canada S7N 0W3 [email protected]

Objective: To determine the effects of resistance exercise on function, fatigue, and quality of life in individuals with ALS.

Methods: Subjects with a diagnosis of clinically definite, probable, or laboratory-supported ALS, forced vital capacity (FVC) of 90% predicted or greater, and an ALS Functional Rating Scale (ALSFRS) score of 30 or greater were randomly assigned to a resistance exercise group that received a home exercise program consisting of daily stretching and resistance exercises three times weekly or to a usual care group, who performed only the daily stretching exercises. ALSFRS, the Fatigue Severity Scale (FSS), and Short Form-36 (SF-36) were completed at baseline and monthly for 6 months. FVC and maximum voluntary isometric contraction (MVIC) were monitored monthly throughout the study.

Results: Of 33 subjects screened, 27 were randomly assigned (resistance = 13; usual care = 14). Eight resistance exercise subjects and 10 usual care subjects completed the trial. At 6 months, the resistance exercise group had significantly higher ALSFRS and SF-36 physical function subscale scores. No adverse events related to the intervention occurred, MVIC and FVC indicated no negative effects, and less decline in leg strength measured by MVIC was found in the resistance exercise group.

Conclusion: Our study, although small, showed that the resistance exercise group had significantly better function, as measured by total ALS Functional Rating Scale and upper and lower extremity subscale scores, and quality of life without adverse effects as compared with subjects receiving usual care.
Thanks for sharing that Craig. I forwarded it to my DH, who is sometimes resistant to doing the exercises as he should...
Only a little leg exerciser has been recommended to us ( a little like a bike) . What are the best resistance exercises?

I want to exercise too! Does it cause awful crampy pains and weakness in those who do? I like to think mine is due to exercise intolerance because that is a hallmark of BFS, which I would like to have, thank you very much. But the burning sensation and pains turn me away from any sort of physical activity. I read on these forum about people who do push-ups! What sort of exercise is possible? If a PAL can do it, then I should be able to also!:-D Cindy
Thanks Craig. That is right in line with the results of the SOD-1 mouse study a year or so ago which showed significant prolongation of muscle strength with excercise vs no excercise. I believed it then and having been doing moderate excercise ever since. It's good to see it verified with real PALS though even with a small sample population.
WOW I had to post due to my experience with bicycles. I know most people will tell you to put as much resistance on an exercycle but i differ with that thinking. Having race USCF (United States Cycling Federation) and ridden double/single and half centuries and now riding at least an hour every day, I want everyone to realize it's not the resistance that will help you on a bicycle. So reduce the resistance and increase your spin. This will massage the lactic acids that will build up in your joints causing you to tire and fatigue making you want to ride less. It also increases your muscle reaction time with the higher spin. Keep your mind occupied by shutting off all the bings and gadgets on your bike and COUNT in your head your cadence (number of times one leg goes around in a minute). Watch a tv show.

Get yourself some comfortable riding shorts to ride in and get a seat that's comfortable. You won't hear this type of training from anyone else except a rider that's been to the races and back again. Next year's Tour de France starts July 1, 2008. Let's watch it. And you thought Nascar drew a crowd.....How about lining a road with people for 180 miles.

And if anyone has a problem with their bike....throw your questions at me. I can try to talk you through an easy repair and save some money.

Wow i like this thread.

My brother Tim is in therapy now. I do know you have to have a good Physical Therapist that knows ALS. You can do damage to the muscles by overworking them.

I am getting Tim a Stamina InStride Cycle XL. Its small and sits on the floor with foot grips on it. And you just cycle your feet around. Which will help keep his strength that he has in his legs and feet. Therapy recommended it for his legs.

He has no use of his Arms and Hands. I don't think the Occupational Therapist thinks there is any hope for those.

Just be careful and get Medical advice, before you push it.

So would walking accomplish the same thing if a bike is not available? I gave up my membership at the gym when the PT guy noticed exercise made me weaker. And there is no room in my home for a piece of equipment. Any thoughts, anybody? Cindy
Hey Cindy,

How are you?
maybe you can try some light working out and stretching exercises using light dumbells and push-up grips and a stick, kind of Aerobics. We don't really need machines or heavy equipments to work out.
thanks for thoughts on exercising

:-Dthanks for everyones replies. If overdo on one day, it takes the next complete day to get to feeling back to where i was the day before. Is that familiar to anyone.
Among the many factors contributing to motor neuron death , oxidative stress is thought to be one.When exercise outstrips the oxygen supply and anaerobic metabolism kicks in with the production of lactic acid ,studies suggest that this lack of oxygen can be a trigger for motor neuron damage in PALS. So in a nutshell, mild exercise is good , but don't work too hard as it can cause more harm than good to an already stressed system.Regular , gentle exercise is much better than overdoing things on one day and having to recover the next.
Hope that helps!
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