Exercise and progression

[affected]

I'm wondering what people have found with themselves or their PALS regarding continuing to try and use wasting muscles.

What I'm asking about is - if muscles are wasting and you continue to push using them, even to the point of some level of discomfort even a little pain, does this seem to speed progression, make no difference or even be beneficial?

If a PALS wants to 'fight' this disease, are they better off pushing themselves, or slowing down and being very careful is what this comes down to I guess.

 

[Txgirl]

Tillie, I have found that if I over extend my muscles. I have cramps/spasms and fasciculations. IMO pushing muscles to a discomfort level is not good and will make the muscle waste faster. With ALS slowing down is the best thing a PAL can do.

 

[affected]

thanks Txgirl, I do appreciate hearing what PALS can tell me about their own experience. I watch, and I experience with my PALS, but it's not the same as the person who it is actually happening to.

my PALS certainly finds that reaching for something 'just that bit' too far, will cause immediate cramping and spasms, and his arm can then be paralysed for some seconds until the cramping eases

It's what bothers me, he understandably wants to keep doing everything he can, but I honestly think sometimes that I see him do something one day that seems too much to me, and it seems to me the next few days I will see a decline in him. It makes me wonder if he is doing himself no favours really, even if he enjoyed doing too much one day.

Such a fine line it seems. He doesn't want me to set his limits, so I honour that and let him do what he thinks he can do, but I must admit I worry a bit.

 

[Tx Daddy's Girl]

My dad went to PT and they were doing some sort of electro therapy (TENS?) and it sped up the wasting; also, he was retired but worked part time in a hardware store and was straining his muscles and a nurse told him that was worse because it hurt the muscles and they couldn't repair themselves. I think straining, exercising to the point of muscle fatigue, and over exertion is not productive

 

[affected]

I wonder how I explain to my husband that whilst I dearly love his stubborn independent nature he is only doing himself more harm and speeding things up?

Or do I just say nothing and let him do it his way?

 

[ottawa girl]

Frankly, I know I overdue it on some days ( sometimes paying for it the next day or two).

I often silently feel irked when I'm repeatedly (but lovingly) reminded to slow down, cancel an event, or told that I'm doing too much around my house etc.

I'm learning to pace myself, and my common sense, more often than not, does prevail - but I really want to remain in charge of my life, home, social calendar and activities for as long as I am able. Obstinate? You betcha!

Energy conservation, for me, is an exceedingly difficult and frustrating concept to grasp. The mind is so willing while the body is hit & miss.

 

[veggiepete]

Regarding Tillie's question. . I get really twitchy and short of breath if i do too much, (or stressed). I think pacing is definitely wise.. This doesn't mean giving up, but hopefully not speeding up any progression.
All the best
Pete

 

[John1]

The benefits of exercise for PALS has been long debated but until recently there has been little science available to provide an informed decision. Some recent work has (to my mind) shifted the debate to the positive side for exercise. A few studies with ALS mice have clearly shown that exercise actually prolonged life spans. Doe mice results translate to humans is now the question.

Studies of moderate exercise regimens (with stationary bikes for example) suggest that exercise promotes the generation of neuroprotectants.

I follow a very moderate exercise regimen with a stationary bike/rowing machine. I have no way of knowing whether it is helping or not.

Here are two links to some descriptions of exercise related studies:

http://blogs.als.net/post/Exercise-does-a-body-good-But-what-about-pALS.aspx

http://www.eurekalert.org/pub_releases/2010-06/uoa--ems060810.php

 

[jellis86]

I concur with John1, it's debatable if exercise helps or not. I do moderate walking at least 3 times per week, whether it's walking through Walmart or following behind my self propelled mower.

If I over do things, it can take me days to recover.

I am also seeing a Chiropractor who specializes in neurological diseases. His treatments are more like massages and slight muscle manipulation than what you'd expect from a chiro. So far it seems to help my ROM and helps keep pain down.

But knowing if something is helping is so darned hard with this disease. I tend to think I'm slow to moderate progression wise, so is that because I keep my weight stable, moderate exercise, or certain med/supplements, or a combination of all or NONE of those things?

 

[Atsugi]

My PALS benefited only from Range of Movement "exercises" to deter joint pain.

Explain it like this: ALS isn't really about "muscle wasting," it's about nerves destroying themselves.

 

[Katie C]

I would say as long as cognitive impairment is minimal, the best you can do is gently remind him (while acknowledging his frustration) but try very hard not to nag.

 

[Barbie]

I think if a pals wants to do more then they should, but not to the point of pain or discomfort. They are not doing them selves any favors, but it is human nature to want to do more (at least what they use to be able to do). ROM is an excellent way to exercise the limbs and joints--think of it as yoga!

I think optimism and keeping the mind active helps a great deal with the life span of a pals. At least that is what I think helps my husband most.

 

[affected]

thanks for the varied replies so far.

veggiepete mentioned that he gets twitchy if he does too much. my PALS twitches constantly but yes, for example if he goes out and spend 2 hours brushcutting which also involves quite a bit of walking, the twitching goes quite mad for hours after.

I watch this and wonder does this mean the nerves have been more damaged? I see his hands become worse over the next few days.

His hands are very drawn in, almost no fine motor skills left, weak wasted arms. But once he can get hold of that brushcutter for example, off he goes.

KatieC I don't say anything let alone nag 8) I tried to say my opinion months ago when he was first diagnosed and the arm/hand wasting started and he was adamant about how he wanted to do things, so I have let him make those decisions.

Thanks for those links John, the fuller long article was so interesting! I have tried to encourage my PALS to use my aerobic exercise bike with all resistance turned off to do gentle exercise, but he hasn't tried it. Instead he may do very little for days in a row, then IMHO get up and do too much, rather than regularly doing some gentle things.

Elaine what kind of physical activities you overdo and how do you pay for it the next day?

in appreciation

 

[ottawa girl]

Tillie,

Mostly if I walk too much or stand too long- the next day, my pegs can barely move. I'm scary shaky, so I sit or lie for hours to rest up. If I plan too many things on a given day ( even using my scooter), I'm done in. Fatigue. Like hitting a wall. I can nap 4 + hours in the afternoon the following day and still sleep the night. For example on Saturday, I went out to lunch with some girlfriends, visited an apple orchard (scooter) and then my sister took me grocery shopping (scooter). I was so done in, I slept during the ten minute ride home and went directly to bed.

The three most energy sapping activities, for me, are showering, eating & talking. ( in that order) Even my daily ROM exercises don't tire me as much as showering does. And yes, the more tired I am, the more I twitch and then the cramping/spasming are more intense as well as shortness of breath.

 

[affected]

thank you for so much detail Elaine.

It's funny, my PALS says that he feels really good after he gets out and does some physical stuff, but I notice how much it then tires him. He will often sit saying he is going to do as much or more the next day because he feels so good. But next day he never does do a second day in a row.

Showering is fine here as I undress, dry and dress him, and if hair washing is needed I do that. Before that it was starting to fatigue him a lot.

Eating definitely, but the peg goes in in just one more week, so that will help a lot as he can eat less by mouth then.

Talking also tires him, but more in a mind way. He has so much in his head to say, but can't get much of it out his mouth and that wears him out.

That day out sure does sound like it was too much, 3 things in one day! Still it's hard to pull back I can really appreciate the frustration.

Interesting comments from KCAE, pity it went into a new thread. I wonder how much difference it makes about the physical levels of the person pre-ALS as to what exercise they can maintain to help and not hinder. It would all have to be so individual it must effect researchers trying to find what is a 'good' level in a general sense.