What about exercise and ALS?

[alspatient]

I walk with the help of a walker to the bathroom and I walk a few yards everyday. If I don't walk for a few days then I find it difficult when I resume again.
I was not writing anything till sometime back. But I started doing Sudokku (Math puzzle)daily. I am now able to write very slowly when I had given up totally.
How often should one do it and is it harmful or beneficial?
Bob.

[John1]

I believe exercise is beneficial. Some studies with SOD-1 mice have shown it to even increase lifespan. A study of people with ALS found exercise to slow muscle weakening. http://wwwncpad.org/research/fact_sheet.php?sheet=167&view=all

[Rhonda]

My Doctor told me to go easy on the exercising, and no weights of any kind. They suggested walking or swimming and not to over do it. Rhonda

[Frizzel]

Yes, walking, swimming, stretching and I try to slowly bring breath deep into my lungs.
ALSO, laughter when possible is great! some days I start making haha haha sounds that sounds funny to me and make myself laugh. I can't get my smile icons to work. I am smiling though. I also try to rent old funny movies or anything that puts a little lift in my step and is good for my lung capacity. Good to know we can call you Bob now. All the best! CHeers!

Frizzel (BTW) you say my name like this. Fri with a lite 'i' sound and zzel with a soft 'e' sound.

[John1]

Aargh. I can't edit my previous message even though I only posted it 2 hours ago. There is a missing "." in the above post's link to the article on ALS and exercise. Here is the correct link:
http://www.ncpad.org/research/fact_sheet.php?sheet=167&view=all

[Al]

Sorry about that John. It's built into the software that way. I don't know why but that's the way it came. So until David or I win Super 7 or 649 it's probably going to be that way.
AL.

[Frizzel]

When I mean walking and swimming, I really mean (at least for me) to try to keep moving as long as I can...I don't 'walk' or 'swim' in the normal sense of the word. I mentally feel better when I move AND stretch or having someone stretch me does help with the cramps and spasms.

CHeers to a new spring day!

[Omar]

Hey guys,

what an interesting subject, I was pretty much thinking about working out lately whether it is good or bad for ALS patients, my Neurologists and physiotherapist told me to even go to the gym as long as I can do it and as long as I don't over do it with heavy dumbbells, so simply to listen to my body, I am really curious but I do agree with you Frizzel, mentally it feels good.
But stretching is really important cause sometimes when my feet are stiff, I do some working out with stretching and it feels great after it. Also swimming is very good.

see you guys, ;)

Omar

[CindyM]

Any little activity leaves me crampy and sore. I get shin splints-the kind I used to get when jogging- just walking short distances. If I plant something in my garden (which I do anyway) my hands are too weak to hold a cup of coffee the next day. And I can climb a flight of stairs three times but the 4th will leave my legs heavy and unresponsive. Plus it takes 2-3 days to get back to normal. But I do miss excercising. It was a natural high. Meditating helps me relax but I always was a on-the-go sort of person. The only time I get scared is when I excercise a little and the next day find I have lost function.

I wonder, though, if this is something other than MND? Nobody else seems to mention this sort of excercise intolerance....Cindy

[Saubier]

Cindy,

I used to compete in table tennis tournaments and did pretty well. I don't compete now, but I still train with my training partner of 35 years. I don't find that it tires me as much as it used to. Of course I can't expend the energy I used to, but I expected to be more tired and stiff, not less. Also, it seems my conditioned reflexes work better because now I can't override them consciously.

Pappy

[Al]

I think Cindy that over the years a lot of us have experienced this but felt that being a muscular disease it was normel. At least that's what I always thought back when I could lift something heavy enough to strain something.
AL.

[hboyajian]

My dad did range of motion and strength retention exercises several times a day for the last 4 years. These were given to him by a physical therapist when he had a falling incident, landed on his shoulder, and strangely had difficulty walking for a couple of months in addition to trouble with the arm he landed on. I think this was the beginning of ALS, though he was not diagnosed until almost 4 years later. He regained most walking ability and shoulder use, but then gradually had increasing back problems as the muscles in his back and neck could no longer hold an upright posture. Though he gradually lost strength for walking, and using his arms and hands, I believe the regular exercise regimen kept him somewhat functional until the day he died. The neurologist who examined him in the hospital was surprised at how strong his grip was. Nobody ever gave him breathing exercises, and I think these could have been beneficial, even given him a little more time. Whenever Dad was unable to go out for his daily walks for a period of several days due to travel or other factors, he lost stamina and was unable to regain it.
Sudoku and word puzzles were a favorite pastime, so maybe the daily writing kept him going in this way as well.

[John1]

Any little activity leaves me crampy and sore. I get shin splints-the kind I used to get when jogging- just walking short distances. If I plant something in my garden (which I do anyway) my hands are too weak to hold a cup of coffee the next day. And I can climb a flight of stairs three times but the 4th will leave my legs heavy and unresponsive. Plus it takes 2-3 days to get back to normal. But I do miss excercising. It was a natural high. Meditating helps me relax but I always was a on-the-go sort of person. The only time I get scared is when I excercise a little and the next day find I have lost function.

I wonder, though, if this is something other than MND? Nobody else seems to mention this sort of excercise intolerance....Cindy
Cindy,
This has not been my experience with ALS. If I overdo something like walking it may make me a bit sore the next day but never shin splints and nothing like 2-3 days for recovery. Maybe (cross-fingers) you should be looking for another cause than ALS.

[CindyM]

That is my hope. One of my visits to the ALS clinic the Doc said, "I hate to tell you but I think we should test for MG." I replied, "Sure! Any treatable condition is a happy thing!" But I don't have that, or Lyme, or any other known condition other than the "lets-all-scratch-out-heads" kind of puzzlement. And as long as I'm in this plateau I'm beginning not to care. Amazing how quickly we adjust, isn't it?:) Cindy

[janf]

AMAZING HOW WE COPE WITH WHAT LIFE HANDS US. tHE PROBLEMS SOME OF US FACE, IF WE WALK WE FALL, IF WE SWIM WE DROWN. LAST YEAR I COULD SWIM STILL JUST A LITTLE. THIS YEAR IM IN A W/C, CAN STILL MOVE AROUND SOME WITHOUT HELP. IVE ALWAYS EXCERCISED AND I MISS IT SOOO MUCH. MY ADVICE IS TO DO WHAT YOU CAN NOW AND DON' T STOP, BUT, YOU CAN'T OVERDO IT. JAN :)

[CindyM]

Good advice, Jan. We should all sieze the moment! This day was made to enjoy. It is easier to feel gratitude than a negative emotion. :grin: Cindy

[Bob m]

Hi Ya'll,

I have found a lot of information on this web site, but have a question.

I got in the pool for the 1st time since last Oct. Last weekend we finally got a sling lift installed, but I found I can still float on my back but if I rolled on my stomach, I nearly drowned. My problem is I cannot stand (with out a walker), I have no balance. Does anybody know of anything that will assist me in the pool?

Bob M.

[CindyM]

Bob-you might also check with your local YMCA to see what they would recommend. when I used to take lessons there i saw quite a few differently abled folks in the water but I can't remember what they wore or how the staff helped. The Y might be a good place to start your research. Let us know how it goes! Cindy

[John1]

Bob, my walking is nearly history too. When I swim I wear my sea-kayaking vest which has lots of upper body buoyancy but even so I fear rolling over head first and so someone keeps an eye on me. Pool "noodles" - foam cylinders about 3' long and 5" thick - when tucked under the arms are very effective in supporting you in a safe upright position as well. Life belts for PALS are death belts; they lift the middle and push the head into the water. I used to be an excellent swimmer and now swimming around for 10 minutes with a flotation device is onerous.

John

[Wes_E]

Great thread topic. I've always been into working out and I think it is beneficial for us.
I try to do something physical every day. I love to surf, run, swim and lift light weights.
My neuro recommended low impact exercise and only lift light weights with lots of reps. We can tone muscle but can't build muscle. I went surfing yesterday and had a great time. Granted I have a broken foot and could only belly board, it felt great to be in the water with all my friends.

This disease is so wicked in how it affects all of us differently. I hate it but continue to fight.

[Al]

Just a word of caution for the swimming crowd. If you are using a Bipap you will notice the pressure of the water on your lungs is greater than you would think. Be careful . I can't even sit in a tub of water up to my neck and breathe.
AL.

[saska]

Life belts for PALS are death belts; they lift the middle and push the head into the water.

My earlier post that an exercise buoyancy belt might help was a realllly bad suggestion. I am so sorry. Al, please delete my earlier post. Thanks. Sharon

[Al]

Not a problem. At least you made a suggestion. Obviously someone else had a bad experience and told about it. That's what we do here. Try to help each other.
AL.

[ltr]

Annmarie - that's like I have said, we have to accept the "new" us and work with what we can do now. With that I am not as unhappy about what I can't do anymore. When I was reading the post from Wes, I had a nice picture of him on his surf board, laughing and splashing with his friends. So, I thanks for sharing that, it gave me a smile. Leslie