Is Strength Training a good idea?

[JAKE]

Earth Mama,

Sorry to hear about your progression. Try to keep a positive attitude and let God give you that peace and confort that only he can give us. I was dx'ed in Nov. 2005 with "probable ALS" after having problems about 2 years prior to that. As I write this post I have weakness in my arms and legs and muscle loss, but I can still walk well with my walker and some around the house without it. I have a 4 wheel scooter that I use outside the home and it has been a blessing. I have no problems with breathing, speech or swallowing. Just remember that your not alone, there's people with various problems in here. Thanks for giving us an update and may God bless you Earth Mama.

[CindyM]

Good to hear from you, Earth Mama. We missed your sense of humour! Sorry to hear you are progressing, though I want to thank you for sharing your report. This is a great help tp people.

[juliesmile]

Thank you Earthmama, for your update. I read your thread when first coming to this forum just about a year ago. I printed it out for my husband because he had the same questions. We just couldn't decide if he should be exercising or use what energy he had just to get through the day. He works hard physically anyway, and at the end of the day he just couldn't get up for an exercise routine. He too, started out extremely fit and I think that's why he is still walking so well. He has complete atrophy of his left leg below the knee and wears a brace, he is losing weight and down right skeletal. It surprises me that he still is able to walk with out a cane or walker, as he has so little muscle mass left, yet what he does have is very strong.

I'm so sorry about your progression. It just doesn't seem fair to be in such good shape and have to watch it all just slip away. This disease is beyond wicked.

Julie
wife of PALS Steven

[elenora123]

Hi I am Barbara Brown from new York.I am a student.i am new to this site and i am here to say hi to every one and discuss one thing with every member of this forum.I’ve been working out for many years now, and i want to know how I can tone my body better without losing a large portion of weight, mostly my chest and midsection? I’m 6ft 198lbs I would like to be around 195 but in much better “shape”. My diet sucks and i’m trying to work on it, but I work out at the gym 2-3 times a week lifting weights and running. I dont run a whole bunch though, would that help my problem or will that just make me lose wieght?
Barbara

[joelc]

Hi Barbara, welcome to the forum.
Do you have ALS?

[Al]

Joel, I'm guessing she doesn't and it's Spam for a gym site.

AL.

[t34gib]

I was told by my neuro and physical therapist at Mayo that some excercise is good but you should never over do it to the point of being tired. They said that by doing this as motor neurons die the other motor neurons compensate for them and that this can keep your muscles working longer. I only have bulbar now but do the excercies just in case. Also I golf so I get a lot of stretching excercise. Just don't overdo.
NancyS

[MtPockets]

My limit on exercise is gettting in my lift to get out of bed and into the wheelchair. Whew, hard work.

[LauraW]

Earth Mama,
Don't take in too much protein. I give my mom lots of good fats...coconut oil, olive oil, avocados, almond butter, etc... Good carbs, We use Nutribiotic protein powder...it is a 30,30,40 mix. With ALS your body does not use protein well...muscles can't get it and the amino acids just float around with nowhere to go. Make sure you are getting magnesium and vit D3.

[clippedwings]

Interestingly, the neurology team in Monterrey specifies a high protein diet, presumably because they expect and seek to support new muscle growth. I used to be a weight lifter, and was at a reduced level of upper body exercise when I took the advice of an American neurologist and stopped. Upon cessation of upper body exercise, my arms withered. Now there are emerging studies indicating that light resistive exercise is instrumental in slowing progression in early ALS.

Since mid August, I have been undergoing four hours of electronic muscle stimulation, and 45 minutes of cycling on a recumbent stationary bike each day. The neurology team in Monterrey supports exercise as part of the rehab program. The electronic muscle stimulation has been effective in rebuilding my deltoid muscles to stabilize my shoulder joints. My performance on the bike has steadily increased, and my FVC is up to 92%. Using an inspiration spirometer, I am able to inspire 400-500ml more air after my 45 minute ride.

FYI, I am entering year three of arm onset ALS. Currently have little use of my arms, and walk slowly with my wife holding my arm for balance.

John

[Erica]

John, When talking about electronic muscle stimulation, would it be E-stem instrument?
My PT is willing to work with me on that, but we need to know exactly what instrument to use.

[halfin]

I too have been wondering about e-stim for muscles. If e-stim can maintain muscle bulk in ALS (not sure if it can, as the nerves die) then it seems that might be helpful even if the muscles cannot be used. At least muscles would be present and so the tendons, joints, bones, etc would be in a more normal arrangement. Often I hear that PALS develop joint pain and other pains in the later stages as their muscles atrophy away. Sometimes even bones slip out of joints. Keeping muscle mass, even if it were always relaxed, seems like it might help reduce some of this pain.

Of course unlike spinal injury patients we do not lose sensation, and e-stim sufficient to maintain muscle might well have to be pretty intense and uncomfortable. I've had really light e-stim a few times in the past for muscle strains, just to help with pain and inflammation, and I still didn't like it much. A more intense version could be hard to take.

Some of us are probably old enough to remember the ads in the back of magazines for e-stim machines that would supposedly do the equivalent of 1000 sit-ups and give you washboard abs (the old term for a six-pack) while you watched TV. I doubt it was that easy but if the basic idea would do something to reduce muscle wasting in ALS then it could be worth trying.

[Erica]

Good point Hal,
I think preserving muscle bulk is very important. I already suffer a great deal of pain in my shoulder due to a weakness of rotator cuff muscles.
Recently I reviewed an article about e-stim instrument by Empi that is used on pts with muscular atrophy after stroke.
I wonder if it can be used in ALS.
Erica

[clippedwings]

Hi Erica an Hal,

You are on the right track. My PT trained Christine and she conducts four hours of e-stim each day using a unit from LGMedical. I bought a four channel unit, but the two channel unit is all you need. I start with the trapezius muscles near the shoulder blade, progress to the three parts of the deltoid group over the shoulder joint, the biceps, both sides of the forearm, and conclude with the tibialis muscles at the front of the lower leg to help with foot drop. I do this primary to keep my unused muscles active and viable for the success of my stem cell procedure. Additional benefits are better body/joint structure reducing pain and possibility of injury. Better circulation and maintenance of weight since muscle weighs more than fat.

It does take time, as does any muscle building program, and results will not be similar to actual weight lifting. The best you can do is regain muscle tone. Any more questions?

[Erica]

John,
Thank you very much for detailed info on E-stim use.
If you don't mind I would like to get your input on the stem cell procedure.
I'm mainly concern with stem cell introduced to the frontal cortex. I heard of aseizure possibility with irritation of the frontal cortex/lobe. I wonder if there an anti-seizure precautions as a part of the stem cell protocol.
Thank you again,Erica