Is Strength Training a good idea?

[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]

Originally Posted by 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

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.