Is Strength Training a good idea?

[Earth Mama]

I have bulbar onset sporadic ALS with a lot of muscle atrophy in my hands.

I am a personal trainer by trade. I have not worked or worked out since my 20th week of pregnancy in 2005.

My symptoms began in Dec. 2005 when I was considering getting back in training (as a body builder) but my instincts told my to take more time off.

I was diagnosed last month and am still able to take long walks (2 hours) and get my heart rate up which feels better than being sedentary.

My fasciculations get worse in the evenings the days I walk farthest and the muscle soreness the next day seems out of proportion with my exertion. I've given myself a rest day or two after every day of exertion and seem to recover fully but my muscles seem to be diminishing faster than the tighten that happened when I worked out in the past. I have noticed that my gluteus maximus is flat, very unusual for me!

I've considered the idea of training heavy again, to build up the working muscles but I haven't touched my free weights. I'm concerned about my joints, but also I'm scared that I will 'use up' my muscle if the nerves aren't feeding them any more. The old tear rest and repair method that I used in body building may be affected, eh?

Can strength training benefit my working muscles?

I've increased my calorie intake after losing the baby weight and am trying to eat lots of complex carbs and good fats to protect my muscle mass. I've actually gained 10 pounds-on purpose- as a buffer, since the diagnosis.

An OT recommended a high protein diet, but as far as I know an 'atkins' type diet causes ketosis and then catabolism of the muscles, including the heart, and that is the last thing that some one with ALS would want.

Is there a higher requirement of protein for PALS?

The OT said I need the extra protein so that my body "could fight this disease". From my point of view my body does not appear to be fighting.:(

[Kevinski]

My neuro guy at the ALS clinic told the use of creatine could benifit . I've been using it and have been back lifting weights since July . I do feel stronger. Am still waiting for a final dX . If It is Als It will be Bulbar onset

[Earth Mama]

I have a lot of muscle atrophy in my hands. Last time I lifted I got nasty cramps in my hands. Do you also have these symptoms?

Have you noticed any increase in grip strength or gains in muscle mass since starting up with the creatine?

I really hope you don't have ALS.

[gapeach]

We went to Emory and they told us not to try and build muscle because this is a disease that affects the muscles and building muscles involves tearing them down first before they are built up. They told us my husband could walk and swim to stretch the muscles but that was all. Hope this helps. My husband has Bulbar ALS.
gapeach

[Kevinski]

Have my EMG on Fiday Should clarify things. Yes I have gained muscle mass . Feel great except for speech issues. It not that i can't be understood but I do slurr, and have tongue fasiculations. I think The use of creatine has improved strength all over take care and try and stay positive. I think this is crucial to ones overall state of mind

[MtPockets]

I have limb onset ALS and the more I exercise my muscles the worse it gets. I lose muscle tissue and get more spasms. Someone on here said to think of your muscle as a battery with 100% charge. If you use 10% exercising it never gets charged back up to 100%. Each and every day you lose more of the charge from your muscle battery, until you can use them no more, IF it is ALS.

If you have ALS you may not want to be doing exercising because of the loss of muscle tissue.

Therapy made my ALS a lot worse, I don't know about others, but I quit the exercising on my own and stopped going to Therapy. That was my personal choice, I'm not telling you to do the same.

God Bless
Big AL
:-?

This was an answer to another person who had asked about exercising. Sometimes you can find answers to your questions by using the search link above and see if the topic has been discussed.

I'm no Doctor by any means but just sharing my own experiences and results. I hope this helps someway.

Welcome to the forum.

God Bless
Capt. AL

[Earth Mama]

Thank you for your replies. Lots to think about here. I've done some searching and run into the use-it or lose-it concept as well.

If I can avoid exhaustion my fasciculations won't be as severe in the evenings. But I want to live an active life while I can.

Somewhere I read that the real question is not - is there life after death? We should be asking ourselves - is there life before death?

[gilly]

occupational therpists and other specialists close to ALS have told me that strength training is not a productive measure for people who suffer from the disease. rather, stretching and relaxation for the muscles (ie: yoga and meditiation methods) are far more beneficial to the ALS patient. my aunt has been doing very small hand exercises to focus on movement and range... not on strength. there's a big difference. the doctors have asked her to put as little strain on the muscles as possible. that being said, if your exercise routine is keeping you stronger and making you feel better, who knows... my experience with this disease has certainly beenthat everyone is different. there are definitely strong similarities among the ALS patients but there are even more differences in how they handle and deal with ALS.

good luck!
nicole

[hopingforcure]

Earth mama, wanted to see how your exercise experience is working out. This is another tough choice for all of us.

[rcharlton]

For those areas or muscles showing signs of weakness and atrophy - there's probably little use doing strength training - and stick with range of motion exercises

For those areas unaffected - knock yourself out

Even though my arms continue to weaken - my legs remain unaffected - I bought a recumbent bike after my dx and built noticeable muscle mass on my legs over the past few years

[hopingforcure]

Thank you for the info. That is encouraging that you built some new musle mass in the legs, my situation seems to be odd in that I seem to have atrophy happening all over the body. Hands, feet, stomache, jaw, calves, I cannot seem to find area on body not in bad shape. Hoping

[msde302]

The ALS Clinic at the University of Minnesota told my mom (a year and a half ago when she still had some use of her limbs) that she shouldn't do any strength training. She was instructed to do range of motion exercises. Now, I do those exercises for her so that she doesn't get stiff. The OT talked about how very important it was to keep doing the exercises because it's tough to get the motion back once it's lost.

Now I "take my mom for a walk" by walking her legs from her power chair. She's always suffered from restless leg syndrome, so now, as you can imagine, it drives her NUTS. She said anyone who'd like to invent a machine that can "walk" her legs for her from her chair, she'd be happy to test it out!

[Shatzie]

When I was diagnosed last month the ALS expert told me to go down on my hand weights during the strength training portion of low-impact Jazzercise, from 6lbs to 3lbs, but they don't want me to stop. I am careful not to overuse a muscle and get over tired, but I was told the worst thing I could do was to stop what I had been doing up until my diagnosis. I work out 2-3 times a week compared to 5-6 before.

[hopingforcure]

Shatzie,
I am worried, am I pushing myself to far, I am so much weaker than I have ever been, but still try to exercise, my balance is lousy, and my stomach muscles, well lets just say they are not working like they should. I worked out about 8 hours a week previously, and was in the shape of someone half my age. People at the gym who have seen me work out for the last 18 years, probably wonder what the heck is wrong, I do not say anything about being ill, just do what I can do. I feel like I have lost so much strength already, do not mean to complain, just gets me down sometimes..

[Earth Mama]

I was dx in sept. 2006. It is now june 2008.

Two hour walks are a thing of the past.

Head to toe, these are my changes over 2 years;
I have thinning of facial muscles and complete loss of my speaking voice, the noises I make do not add up to words (I can still whisper clearly but not loudly).
My swallowing is affected now, I can still swallow water but I can't just chug 16oz like I could 6 months ago -I need to pause and coordinate my breathing every few sips.
My breathing is ragged in the evening and using the bi-pap is a battle until I get a new mask.
My arms seem to have reached a plateux and I have retrained my hands to be able to write again, but my hand atrophy is now more extreme.
My rectus abdominous muscles seem to have given up the ghost, leaving me with a pot belly :(
My obliques still work but my back and glutes are so thin now that I look almost skeletal from behind.
My legs still work for short distances, 10ft, without a walker. My legs have irregular zones of atrophy; left ham, right quad, right gast/calf and I have atrophy in both feet -the right is worse with the toes curling under. All that affects my balance so I've used a walker out-side, good for 50yards before resting, since sept. 2007.
A bright red one -it looks fast :)

On the whole, I feel I am doing well. I think I owe the slowness of my progression to the density of my prior muscle mass, built through heavy strength training.

Since onset I find that any muscle damage/tearing/injury is 'cleaned up' by my body, not repaired, leaving me with the holes in my leg mucles I mentioned above.

I still do gentle yoga moves and range-of-motion stretching for the beastly stiffness that would prevent me from walking if I did not work it out every morning.

I do what I can every day, picking up after my son, some meal prep -no knives or heat though! And I try to stay on the good side of my muscles , working with them but not to exhaustion.

If I had my life to do over again, I would do even more strength training -and, I would stay healthy, or pick a different disease if I had to have one; ALS is bloody awful:wink:

[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

[clippedwings]

Hi Erica,
Throughout the history of the clinical trial I am not aware of any complications related to the surgery. You are given an IV cocktail of antibiotics to guard against infection, but the possibility of seizure was never discussed. All of my friends came through just fine. One just completed this week, and another member of my work group just arrived for the procedure to be done next week. Still too early to expect improvements.

[jonsjr40]

Yes work out as much as you can. Iv'e had ALS for 19 years when I got dx I got lazy didn't do nothing then got in wheelchair after 3 years of being dx, I was in wheelchair for 3 years then I got PT at home after 2 weeks was walking again for 2 years. I truely beleave in use it or lose it I know I learnd that the hard way and missed out on a lot.
Take care, God Bless.
John

[joelc]

For a typical PALS this is not a good idea.

John, if you experienced an improvement you are not a typical PALS and I am glad you had positive results. For me, it had the opposite result.

I have often heard it explained this way. Your muscles are like a battery, once you have run out of battery you are in trouble because it does not recharge. If you work them hard they discharge quicker. If you damage them by exercising they do not heal. I have found that to be true.

Everyone is different so please be careful and don't cause yourself irreparable damage.

[halfin]

Like Joel says, everyone is different, but here is my story. I've been a distance runner for a few years and in fact ran a half marathon (13.1 miles) a month after I was diagnosed. That was in September. I felt OK during the race but low energy towards the end. I think without realizing it I was tiring out my legs, because right after stopping my right leg seized up and I could barely walk. It didn't get better for over a week, and then I found that my energy was gone, I could only go about 3 miles before getting tired, and even that was part jogging and part walking. I kept it up though, at first every day, then every other day as my energy drained away. Still I kept running and enjoyed it. But these past two weeks even this is getting too much, I am tired the whole time I am out, and this past week I've only gone out once. My legs feel like lead the past few days, I'm not sure if I'm going to be able to run at all any more, and my walk is getting herky-jerky and spastic, either weakness or UMN problems.

So for me, Joel's "battery" theory seems to have been right. I used it and I lost it. I definitely enjoyed running but now I just hope I'll still be able to walk for at least the next few months.

[Erica]

Hal, I've a pretty similar expirience, though I'm not a runner. I used to work out 2 times a week and walk 2.4 m 3 times a week.
Now, 4 mo past my diagnosis in August I can no longer work out and only able to walk 1 mile. I get very weak and if over do it, my muscle twich more and hurt like after running 20 miles.
On the day of my diagnosis i was told by PT at the clinic "conserve your energy", but couldn't really understand why. Now, I do!!!!
So, i do agree with Joel: don't over do it.

[Big Mike]

I think light weight training in muscles unaffected or largely unaffected is not a bad idea for SOME pALS, especially early in the course of the disease. If you're a slow progressor, it will help keep the tone in your muscles longer, as they will atrophy from disuse as well, which will make it that much easier for the disease to take hold in those muscles when they become affected. If you are lifting too much, though, you will fatigue the muscles to the point where it will be difficult for them to recover.

[JeffP]

I was dx in sept. 2006. It is now june 2008.

Two hour walks are a thing of the past.

Head to toe, these are my changes over 2 years;
I have thinning of facial muscles and complete loss of my speaking voice, the noises I make do not add up to words (I can still whisper clearly but not loudly).
My swallowing is affected now, I can still swallow water but I can't just chug 16oz like I could 6 months ago -I need to pause and coordinate my breathing every few sips.
My breathing is ragged in the evening and using the bi-pap is a battle until I get a new mask.
My arms seem to have reached a plateux and I have retrained my hands to be able to write again, but my hand atrophy is now more extreme.
My rectus abdominous muscles seem to have given up the ghost, leaving me with a pot belly :(
My obliques still work but my back and glutes are so thin now that I look almost skeletal from behind.
My legs still work for short distances, 10ft, without a walker. My legs have irregular zones of atrophy; left ham, right quad, right gast/calf and I have atrophy in both feet -the right is worse with the toes curling under. All that affects my balance so I've used a walker out-side, good for 50yards before resting, since sept. 2007.
A bright red one -it looks fast :)

On the whole, I feel I am doing well. I think I owe the slowness of my progression to the density of my prior muscle mass, built through heavy strength training.

Since onset I find that any muscle damage/tearing/injury is 'cleaned up' by my body, not repaired, leaving me with the holes in my leg mucles I mentioned above.

I still do gentle yoga moves and range-of-motion stretching for the beastly stiffness that would prevent me from walking if I did not work it out every morning.

I do what I can every day, picking up after my son, some meal prep -no knives or heat though! And I try to stay on the good side of my muscles , working with them but not to exhaustion.

If I had my life to do over again, I would do even more strength training -and, I would stay healthy, or pick a different disease if I had to have one; ALS is bloody awful:wink:



hi this is jeffp my pt told me exercice is good as long as i dont tax the mucles .overtraining them will cause more harm than good i was dx aug09 withbulbar als iv been going to pt for 3 months now im getting stronger not able to bulk up my strength is getting better and i feel better .i believe if we dont use it we will lose it .are muscles will tighten up spascity will tighten up streching helps me alot to staying positive and living for today is all we all have just dont over doit jeffp

[JeffP]

i believe exercise is good tom a point .dont overtax your muscles to fatigue or exhaustion .thevmain thing is to keep your strength up.streching is very important if you dont your ligaments will stiffin up and you dont want that to happen im a firm believer if you dont use it you will loose it.also maintaining a heathy diet and for me the most important thing is to be grateful your even able to exercise and stay positive and leave the rest togod jeffp

[MtPockets]

Yes if you do not have ALS. No if you do.
Most Pt's have no idea what is going on with your muscles with ALS. I had limb onset and when I would exert myself, exercise, my CPK would climb rapidly. It got as high as 3000 one time. Why is this important? I was told I was causing my muscle to spasm more by exercising, and the spasms were causing my muscles to raise my CPK. High CPK can block the pores in your kidneys, and cause failure of your kidneys.
Moderate stretching to maintain flexibility is very good I think,there again I am not a Doctor. Just passing on what I have learned with over 5 years of spasms and symptoms.
One made the statement if you do not use it you Will lose it? You might lose it even faster with extreme exercise. Just a thought.