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KW1234

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What are PALS doing for exercise?

When I first developed symptoms in the June and July time frame I had been doing a fair amount of weight training and cycling at the gym- 3 times a week and 2 hours each session and hikes or outdoor cycling on weekends. My balance was getting worse, though I thought I had developed a limp from a knee injury I was working with a PT and ortho team to rehabilitate.

In August I took a bad fall getting off my bike, cracked a rib and bruised my shoulder and knee- this started the journey to discovering I had ALS. Since cracking a rib, I pulled back from the weights and moved over to swimming. I had been swimming 3x a week a mile each time. When I was diagnosed last week, my neuro suggested I cut back on the swimming and only swim with a buddy who can watch me as my breathing is starting to be impacted.

Swimming is one of the few things where I don't have to worry about balance, and it's an area where I feel like I'm getting a decent cardio workout. My legs are too weak for the treadmill, and I can't keep my left leg on the pedals on the recumbant bikes- it just falls off- though I might see if a trainer can strap in on for me. The upright bikes are possible, but I need help climbing on and off as my balance is so bad. My PT has me doing some core and light squat work with TRX straps.

I have a pulmonary evaluation in a couple weeks and a swallowing evaluation, but am hoping to keep moving something somehow as long as I can... suggestions?
 
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Please do search here on exercise as there are a lot of great threads.

The general consensus is - light exercise that you can manage easily is good.
Anything that you take more than an hour to recover from is very bad.

Swimming is definitely a great thing, but if you can have someone with you it is a great idea. You should focus more on keeping moving than trying to swim miles.

I know it is really hard to figure as the usual saying is 'use it or lose it'. With ALS, sadly it is a matter of 'use it too much, lose it faster'.

There isn't a magic formula however because the level of fitness at the onset will make a difference, and which nerves are being attacked and how fast. What I mean is - if the leg nerves are progressing fast and you try to do a lot of hard leg exercise, you will likely find your leg progression hastens significantly. If your legs were really fit, and not being affected yet, then a reasonable leg regime may do you a lot of good at this point. I just picked legs as an example in general, not as in your particular case.

Resistance training can be quite dangerous, so you need a PT who understands ALS to help you. Our PT did not, and tried to tell my Chris that to help keep strength in his arms he should start doing push ups! He got on the floor, managed to push himself up, then his arms gave out and he face planted. I am so glad he realised that this was not going to be a beneficial strategy!

The other thing that really does help is keeping ROM in the joints. If there is a lot of spasticity, as the muscles waste joints can freeze up. ROM has to be done carefully to not damage those tight muscles, but really helps. It may need to be done for you by someone moving your limbs which is called passive ROM.

I hope that makes sense.
 
Definitely check out the threads about exercise here.

The main objective is not to overdo it. Recovery should take no more than a couple hours. I was very sad to give up CrossFit training and biking, but it was the right thing for me to do. You may want to be careful with the TRX, and see a pt knowledgeable about Als. You can do squats and lunges safely in the pool.

In the beginning I did light weights, and the exercise bike. After a while I have found is that swimming is the best for me. After three years I'm still getting in the pool four or five times a week and I think it is great for both my physical and mental Outlook.

Sorry to be welcoming you to our club. Hope you will find lots of good advice here.
 
For years I was in a Masters swim club and swam around 3000 yds several times a week in about 60-65 minutes (doing interval training). My legs began failing first and I could no longer maintain previous speeds or distances, but am still swimming and trying to get back to a regular routine, doing 800-1000 yds a few times per week. My physical therapist at the VA has encouraged me to swim (with the std proviso of not overdoing it) and has given me a set of balance exercises to do in the water, which I intersperse with laps. If you do back and breast stroke along with freestyle you get some good ROM stretches as well (I've given up fly after 2 shoulder surgeries). I also believe (with no scientific evidence) that the discipline of breath management in freestyle and breast stroke is beneficial. The same PT also recommended a recumbent exercise bike, which I'm looking into. She encouraged me to give up the (very light) weights I was using in favor of resistance bands. It's hard to give up the training mindset of harder and faster, though I find that paying attention to your body helps -with swimming I have to be especially cognizant of cramps.

Ed
 
Hmm... I turn my head side to side, try to hold it up when I don't have my headrest, and move my wrist and fingers enough to use the mouse. Keeps me fit as a fiddle after 31 years of ALS!
 
Thank you all for your advice. I agree with you Ed, that the discipline of breath management is helpful. I am mixing in some laps of back and breast stroke.

My gym also has a therapy pool which is a bit shallower that will probably work well for squats and lunges.. I'll give that a try next week.

I'm sensing that when I overdo it, I end up with many more fasciculations at night which tend to wake me up.. I'm so used to pushing myself, that reigning in is hard.

Diane- 31 years- that's amazing!
 
The more I use my muscles, the more fasciculations I get.

I've fallen a few times so my exercise right now is walking around the condo.

Prior to the falls, I used a flotation device around my waist in a heated pool. I could simulate riding a bicycle without hurting any other muscle. Then I would do ROM in the warm water.

Right after my diagnosis I was still doing brisk walking and continued that for nearly a year. I think it made my good muscles stay toned.
 
moderate stretching tires me. recumbent bike, I once thought, would be the solution. not any more. the less amount of muscle usage, the better. however, if it makes you feel good, do it ! ! pinot, merlot, bourbon/scotch on the rocks, exercise, travel, helping others (thanks, forum pals) ? Whatever makes you feel good, do it (in moderation).
 
I disagree with those that say NO to resistance training or exercise in general. I received my doomsday diagnosis January 2014, and have done resistance training for an hour 3 times per week all along. I have also worked out much of my adult life and feel better about my self to do so.

Lately because of my progression, I have only been doing twice weekly with a slightly easier regimen. I also try to do light aerobics 5 days a week, like brisk walking on the treadmill and Airdyne bike. My body tells me how many minutes on the aerobics, but usually it is 15-25 minutes.

My clinic doctors have told me to continue as long as is safely possible. I wish I had a swimming pool in my back yard, or access to a pool. My biggest challenge with working out is to listen to my body and not wipe myself out on days that I feel off physically.
 
Mark really the rule is about how long it takes to recover, and that key to is this is what makes how much, and what kind of exercise, different for everyone.

I've often heard you talk of your regime, and it is obvious that you are very aware of your body and you do the exercise that works for you. I love that!!! It has obviously been an important part of keeping you going as well as you have, despite the ALS.

Let me give an example of what I witnessed as this really hones in on the thing about recovery after exercise. Before ALS Chris was a maniac working outside and his stamina was awesome.

Anyway, after ALS Chris would decide he was going to 'do something'. This was in the early months when he was still mobile. His hands were very weak, but his arms, even tho atrophying, were reasonably strong.

So he would suddenly go out and spend hours with a brush cutter. He didn't need fine motor skills, he could get his grip on it, and the shoulder strap let his body hold most of the weight. He would come in and the fasciculations would be going bananas. He would then spend a good three days totally wiped out, unable to do much of anything. When he 'recovered' his hand and arm strength were noticeably lower. He would spend another day or two doing nothing much, then maybe decide he was getting on the tractor. Again out he would go for maybe 5 hours straight, refusing to come in for a drink or anything to eat. Again, he would be wiped out for days in a row. Again he would have lost more function.

I would so often say that if he maybe took the brush cutter or tractor out for just half an hour or an hour every day and just did a small amount of something ... but no, it was totally wiped out, or totally overdoing.

He was rather extreme, but it was obvious to me that while his legs were good, all the walking with the brush cutter didn't affect his legs, but it ripped his arms apart so fast.

Now having said this, I will never know if he would have progressed at the same incredible speed despite these activities. But I suspect very strongly that doing things with muscles that were being hit hard by ALS, that took days to recover from, hastened the loss of those arms.

The fall he had rupturing his good shoulder stopped him from ever again going out and over-using his arms.
 
when first diagnosed I continued on at the gym like normal attempting to do my regular workout. Didn't take to long before I had burned my legs out. Then I went to the gym in my chair and just did the upper body workout. Pretty soon after that I realized The exercise wasn't helping and from then on I stayed in the chair and just got fat. Now I can only exercise my eyes with the tobi. I would recommend that you continue to exercise but keep it light.
 
Moderation, following the one hour rule and yes swimming water exercise is good if you have a place to do it.

Add me to the pushed it and never recovered what I lost list-and I was being careful.

I have a theory ( mine only - large grain of salt) that those with upper motor neuron dominant ALS fare better with the higher levels of exercise. I am lower motor dominant. Aside from just a hunch people with pure UMN disease( PLS) are often told use it or lose it and ALS people are told use it too much and lose it. If we believe the MND is a continuum theory it would make sense that where you are on the spectrum matters.
 
Working out is going to decrease over time. Do what you are comfortable with. I still go out for walks, yeah they are a lot shorter than they use to be but I'm still getting out. AFO's on both legs helped with my balance. Even with the AFO's I'm getting a little more wobbly so I'm thinking about walking sticks ( a little more comfortable with the idea of walking sticks than canes but I'll do what I have to do as I progress). My dog helps some by pulling me up hill and helps me get across streets faster than I can go by myself. Did a mile and a half today with the dog and my legs were twitching like crazy for awhile afterwards.

Bill
 
I was an extreme athlete in many sports and in just doing thing outside in general.
Now I am in PWC and first thing in morning I do a series of range of motions w/ legs/ arms/ hands/ feet. In doing this daily over last year I have been able to see the digression that my body has been going through.
Yes a pool is great but for me only a little over waist deep as the water pressure gets to be to much for my breathing, like someone getting me in a bear hug.
Still I love the feeling of boyency ! I use what energies I have throughout the day trying to do fun things that don't waste me.
All things considered we each have different bodies and so there is no one size fits all. My two rules have always been
have FUN and DON 'T GET HURT! Love ya chally
 
Really interesting Nikki, I hadn't thought much about the UMN v LMN in regards to exercise.
 
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