Exercise

[Ed Par]

I'm thinking using muscles and exercising is very good for you. When I try and push myself, like a longer ,fast bike ride, or the other day I was helping daughter putting flashing on a window, on my knees for 2 hrs. After doing these two things , when I was done my legs started shaking for about a minute scarring the s.. Out of me. Should I be so thankful and just go for walks etc. Am I doing my muscles more harm them good, the days after they tighten up really bad. Thanks. Ed

 

[Nikki J]

Hi

Exercise is discussed extensively here. The latest research seems to indicate moderate exercise does no harm and may be beneficial for mood and maybe preventing falls.

That said you can not build dying muscle and too much is almost certainly detrimental. You will find anecdotal reports of perceived acceleration from over exertion. I am one. My clinic says if it takes more than an hour to recover 100 percent you did too much

 

[Atsugi]

Remember ALS is not a muscle disease. The nerves that ALS destroys are in your brain. (PS: I am not a doctor.)

To prevent joints from getting painfully stiff, do some Range of Motion "exercises".

If I understand my physiology correctly, I think that the process of "building up muscle" first involves "tearing" them down--that is, causing microscopic fissures in the muscle, which then heal up to become bigger and stronger muscles. HOWEVER, I would not advocate for tearing down anything if you have ALS.

I say this, not to be the last word on the subject--far from it--I would love to read other people's learned perspectives about this.

 

[Kristina1]

My anecdotal experience is like Nikki's, when I overexert I feel I notice a brief burst of disease acceleration.

 

[BK2011]

Can’t say that I’ve noticed any acceleration but I certainly wear out much more quickly and take longer to recover, sometimes days. I do have an atypically slow progression according to the Doctors. As Mike said it’s a nerve disease not a muscle disease. Brain works; muscles work if they get a signal telling them to work; but the nerves sending the signal stops sending that message so they don’t work. Just like living a sedintary life style, if the muscles aren’t worked they begin to weaken and atrophy. As more motor neurons stop working more muscle fibers stop working so the remaining muscle fibers have to work harder to get things done. I walk my dog every day; I walk much shorter trips than I use to but I’m getting more and more tired and I’m walking a shorter distance. Kinda fells like I ran a half marathon when I only walked a mile and a half. I think if you don’t use the muscle fibers you have, they will weaken and atrophy. Certainly if you over do it, you’ll be sore and how much it take to get you there will be less and less as you have less muscle fibers working for you. As the old saying goes “Everything in moderation”.

Bill

 

[KarenNWendyn]

I agree with all the above. BK2011, you could easily be speaking for me.

I used to be a very avid cyclist, riding over 2000 miles/ year for the past 20 years before diagnosis. When I wasn’t doing that, I was hiking, skiing, or in the gym lifting weights.

Now, I’m using a walker but still walking my dog daily, at an ever-diminishing pace. I do a lot of range of motion exercises, and I still go to the gym and use the treadmill. Also backwards walking on the treadmill (it helps being able to hold on to the bars). If I do too much, I feel washed out and get way more muscle shaking and twitching.

Bottom line is I think it’s best to keep as active as you can, but definitely listen to your body. If you don’t feel you could repeat that same exercise or activity an hour later, you’ve done too much.

 

[Ed Par]

Thanks everyone for the info, I refuse to go on line and look up this stuff. I have been told mine, because it's just been my left hand and it's been over 2-3 years that it will likely continue on that path. Once the dr. Confirm what I had it's like it's everywhere , I know most of its in my head but it's so hard to get around it. Every time you feel anything you think the worst. Anyway thanks for the info ,much appreciated. Ed. Ps. Bill I see your from Clearwater I've spent the last 4 winters in Estero. A lot nicer weather then Ontario.Canada

 

[KimT]

My experience with exercise is that, in the beginning, it was pretty easy for me to walk a mile very quickly. One year post diagnosis, I turned my ankle carrying four bags of groceries not noticing the curb and I was hopping or in a wheelchair for about 5 months. It warmed up and I started working in the pool. I did lots of "peddling" sitting on a noodle and I was finally able to start walking again. Now, a year later, I can still walk for 1/2 mile on the treadmill and walk around the stores for 30 minutes or so.

I have lots of pain, mainly in my joints and back. I feel better when I'm moving around but, when I overdo it, I feel like I've run a marathon. When I walk, my legs feel like I'm walking in knee deep water. It takes more effort to move but I still walk fast and don't use a walker or cane. When I walk slow, my balance is bad.

After that fall, I've been very careful.

I was a very heavy exerciser prior to ALS. I ran, biked, hiked, surfed, played golf and softball and worked out at the gym 2-3 times a week. Exercise was my drug of choice.

Even now I feel so much better psychologically when I get up out of the chair often; walk down to get the mail, or grocery shop.

Just be very careful not to fall. It took 6 months of fun off my life and made my back pain much worse.

 

[Vincent]

I was thinking of calling in a priest to see if that might fix things...... Oh that's exercise not exorcise. Someone described it as being given a number of spoons to last the day. Everything you do costs you one or several spoons. When they are all gone you are done for the day. If you go over the limit you are using tomorrow's spoons and have fewer to spend tomorrow. Anything you can't completely recover from in one hour is too much. If you hurt tomorrow, you've done way too much.

This is where equipment comes in handy. Let's say it costs two spoons to go down the road to meet someone for a coffee. With a cane, you are steadier and use less energy, say 1 1/2 spoons. With a rollator, you are even steadier than a cane and you can sit down for a rest on the way. With a manual chair using your arms can actually use even more energy than walking. If you have someone pushing, you aren't using energy, but you have to rely on someone to be available to push you. With a power chair, you use 0 energy getting around and you don't have to rely on someone pushing you. You have a bigger world and independence. And you get to keep your spoons.

Vincent

 

[BK2011]

Ed,

Yeah, I like the weather down here better than up north. Lived in Kodiak, Alaska for three years before moving back to Clearwater (my home of record before joining the Coast Guard). Moved back 27 years ago; still thawing out.

Kim said walking feels like walking in knee deep water. It use to feel that way, now I describe it as walking in knee deep mud. When I over do it my fasiculations are much worse and I get pretty severe (read that painful) cramps in major muscles I used. Walking, going out for a day on the boat, paddle boarding, spending a day at the beach, the legs act up. I sit a lot more when I do those things than I use to. Walking in the grass to mow the lawn was getting to the point of being dangerous because I stumbled forward frequently so I bought a riding mower with hand controls. Using edger, weed eater, hedge cutter, etc. and my hands are cramping for several hours. Now I break those jobs down into several days, heh, I’m retired I’m not in a rush to do anything.

Bill

 

[KimT]

Bill,

I used to drive to the Gulf every summer and stay in Lido Key. I loved the warm waters and no waves of the gulf for just floating. It was very therapeutic for me.

Before ALS I could ride the waves of the Atlantic but no more. Plus, it never warms up enough. I've only been to the beach three times this year and I live right on A1A in DB Shores. Waiting for the sun to come back out!