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JeffP

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Joined
Jan 8, 2010
Messages
295
Reason
PALS
Diagnosis
08/2009
Country
US
State
MI
City
Iron Mountain
i hear so many different opions on this issue .i was an active bodybuilder and started noticing one arm was getting smaller than the other.never had that before.then i hear not using the muscle is when athrophy sets in .im confused if thats the case how did it do that to me if im on a 5 day workout plan a week. im told not to overtax your muscles because it weakens them and will cause more problems .the only way to build a muscle is to work it hard which in turn tears it to make it grow .now if it isnt getting the nutrition in there because of the als your breaking it down causing more damage .any replys to this i would love to hear
 
Jeff,

The way I understand it is that ALS stops communicating with your muscles. When muscles are not talked to, they atrophy. If they are exercised because of other healthy muscles , brought along for the ride so to speak, this atrophy will be slower.

Now is the important part. It takes energy to exercise. In the beginning, its not as noticeable , but you only have so much energy. Like a gas tank , once its empty it can take a long while to refill, days even. If you are used to burning the candle at both ends, as I was, its a hard lesson to learn.

If you strain or hurt a muscle, its a lot longer to heal.

I am not saying do not exercise, just do it smartly, ROM exercises are good , stretching also.

Hope this helps
Glen
 
Jeff,

I know you seen the great information over in this thread:
https://www.alsforums.com/forum/do-i-have-als-als/11003-emg-weakness-atrophy.html

Perhaps what needs clarifying though is what Hal meant by "muscle fibers are not being used". That doesn't necessarily mean when the entire muscle (like your bicep) isn't being used... it means when a group of muscle fibers within that muscle isn't used. So even though you were working your muscle, some of those fibers were not being used because the nerve has already died. Those muscle fibers then get recycled by the body... which cause the atrophy.

At least that's my best understanding.

Brian
 
i think you can build til you reach a certain point. Basicly till the area is effected. This is what I am experiencing. My legs have been pretty good until recently. They started weakining shortly after I moved. The difference between where I live now is stairs. I am pretty convinced climbing stairs is burning my legs out. IMHO
 
i asked about this in hospital, citing also the fact that bipaps take over the use of your muscle, so THOse muscles are not being used and one does not want them to atrophy completely thank you.

It was explained that you do what you can do EASILY. Anything else is making the disease worse. You put no strain and no real effort into things, very very hard for all of us many who were sports people. Same gores for talking and eating. Just till itstarts to get a little tiring, then you stop. They seemd quite clear on this
 
Jeff, you can NOT build a muscle that is dying. Everyone is correct in their replies. Gentle stretching and passive ROM. Maybe Hal's "Fran" will reply with the particulars as it is her area of expertise. :] I explained it to Web like this, Every day you have 10 golden coins to spend. You can spend them one at a time or all at once but you must spend them wisely and spend them on what it is that you REALLY want to do. He is having a difficult time having a limited number of golden coins and suffers the consequences when he doesn't spend them wisely with complete and utter exhaustion. Spending the golden coins is one of the few things that PALS have complete control over so spend them wisely :] The other thing is that you can not save them and build up a reserve like a savings account. At least it is that way for Web. :[
 
I want a Golden Coin Credit Card with a life insurance policy! I am getting used to "Ripley", my new facehugger and and every night that I spend with her blowing air into my mouth and nose gives me a few extra coins to spend the next day.
 
Long ago I read a study on ALS and exercise. I just googled and I think is the one that I read--albeit it is a small study from 1993. I believe there is a more current study with similar results but I haven't found it so far.
Laurel

Supervised resistance exercise slowed functional loss in small study

People with early-stage ALS who engaged in a supervised resistance exercise program had better muscle function after six months than a similar group that participated only in a stretching program, say U.S. and Canadian researchers who recently conducted a 27-person study.

Although the debate persists over whether or not exercise is beneficial or detrimental in ALS, these latest study results represent a potential first step toward resolving the long-standing controversy.
Physical Therapy
Physical therapist Jeanine Schierbecker assesses the strength of a man with ALS.

The research team, which included a physician and physical therapists associated with MDA/ALS Centers in New York and St. Louis, found that, even though exercise may not have any ultimate influence on disease progression, it may temporarily slow loss of strength and function and minimize muscle wasting that results from lack of movement.

In a paper published in the June 5 issue of Neurology, the investigators say they randomly assigned 13 out of 27 subjects with mild to moderate weakness to a regimen of stretching and resistance exercise. They assigned the other 14 to a control group that performed only stretching exercises. Eight people in the stretching-plus-resistance exercise group and 10 in the stretching group completed the trial.

The stretching routine was the same for both groups and was performed daily, while those in the resistance exercise group added individualized exercises using cuff weights three times a week.

After initial instruction, all exercises were performed at home, with telephone monitoring every two weeks and physical assessments every month.

After six months, those in the resistance exercise program had a smaller decline in muscle strength than those performing only stretching exercises.

“Our study, although small, showed that the resistance exercise group had significantly better function, measured by the ALS Functional Rating Scale and upper and lower extremity subscale scores, and quality of life without adverse effects as compared to subjects receiving usual care,” said study author Julaine Florence, a physical therapist at Washington University in St. Louis.
 
well thanks all you guys for your replys it helps alot .i just dont want to do something that affect me latter on .asking is what i do if i dont ask then i usually go by ego if you know what i mean thank god i learned that lesson years ago thanks again jeff
 
Hi, Jeff.
I'm a Physical Therapist, and my husband Hal was a runner and also lifted heavy weights prior to being diagnosed with ALS last August.

When you look for an answer about how much to exercise, and how to best slow down muscle loss, inevitably you find lots of conflicting advice. That's because everyone with ALS is different, and even within the individual, the specific way the disease is working changes over time. My understanding is that through whatever process, PALS' motor neurons are being made to die. We want to optimize the environment for the remaining motor neurons, to keep them functioning as long as possible. In addition, we want to keep the remaining muscle tissue as healthy as possible.

To do that, in the ideal situation, we exercise the healthy muscle enough to keep it from atrophying through disuse. We include stretches to maintain flexibility, as well as enough strength or functional usage to meet the muscle's current abilities. This is different from the way an healthy person who doesn't have ALS would go about doing a strength program. In the case of the person without ALS, the best way to maximize strength gains would be to go beyond the current level of the muscle. The muscle would be injured, and would send out signals - primarily chemical or hormonal - that would trigger responses resulting in repair and building of stronger muscle tissue. For PALS, the chemicals or the response systems are messed up in some way. So too much exercise can both injure the muscle and possibly accelerate the destruction of remaining muscle.

So you have to find a good level of exercises - that maintain what you have, both in ROM and strength. You can go beyond, gently, in ROM, to carefully increase flexibility, but it is probably best to be more careful when it comes to strength. If you can walk, continue to walk. But not so much that you are sore, stiff, and tired later. If you like to and can lift weights, do them at a level where you can do 25 reps or more, and don't go to complete exhaustion. And be ready and willing to lower the amount of weight you are lifting when you find the weight is becoming more challenging. Don't let any prior bodybuilder or athletic training experience lead you to ignore fatigue. This disease is progressive. The last thing you want to do is speed up the progression. Stay as healthy as you can, get lots of rest, and exercise in moderation. . .
 
Fran-

Thanks for weighing in on this topic. It's nice to get your thoughts, ideas & opinions since this is your field of expertise!

Hal-

You do know how lucky you are, right?:wink:
 
Hi, I've just joined this site. My dad was diagnosed with MND ( we think ALS although he's progressed quite quickly it seems) in Dec last year. I'm scared for him as he was always life and soul, and I know as he becomes more dependent it's going to destroy him. He has been an inspiration though and has been so positive and not complained or moaned once..not asked why me just been determined to live life as normal and as full as possible... He's been suffering with terrible headaches in the mornings for the past four weeks and in the last two he's had them every morning, he's also barely eating now and has lost a dramatic amount of weight... does anyone know anything about the headaches ? he's neurologist has just given him pills and said they're nothing to do with the disease but my gut feeling is that well I don't believe him...
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