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Earth Mama

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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

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May 23, 2006
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PALS
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Alberta
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Use Creatine

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

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Hi Kevinski, thank you for your reply

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

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lanett
hi, earth mama

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

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Calgary
Hi Again

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

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Jun 1, 2006
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Ms
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Exercise and ALS

MtPockets said:
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

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PALS
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Thank You

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

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what i heard...

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

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

rcharlton

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Joined
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Messages
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PALS
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11/2005
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Toronto
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 diagnosed and built noticeable muscle mass on my legs over the past few years
 

hopingforcure

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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

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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

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PALS
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02/2008
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OK
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Tulsa
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

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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

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PALS
Country
CA
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British Columbia
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Comox
Hello and thank you for the responses

I was diagnosed 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:
 
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