Old 05-30-2016, 11:20 PM #1 (permalink)
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Default Exercise

I said I was going to have questions. Here is another one:

Is it good to exercise?

My daughter has been taking me to the gym about two to three times a week. I use the exercise bike for about an hour or less.

I, also, was going to physical therapy, but recently stopped because I it depresses me. I used their exercise bike for 10 minutes, practiced standing up (did not do very well, and always wanted to cry), and some stretch exercises (which I can do at home).

Every time I exercise I sleep afterwards.

The sticky states we should conserve energy. Am I doing more harm to myself by doing this? Is this a waste of time? My daughter wants to build my muscles up, but from what I have read here, that cannot be done.

Hugs,
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Old 05-31-2016, 12:03 AM #2 (permalink)
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Default Re: Exercise

Since ALS is a disease in the brain that stops the "go" signal from activating the muscles, it doesn't matter if your muscle is big, little, or ginormous. When ALS destroys the nerve that would activate your bicep, your bicep will lie there limp, whether it's been exercised or not.

Regarding exercise, I think there is general agreement on two things: First, if it makes you happy, that's a good thing. Second, range of motion "exercises," that is, moving the limbs properly will reduce the pain of stiff joints. A physical therapist is likely (but not guaranteed) to know how to teach you and your CALS to do ROM exercises.

However, I mostly see the ALS community telling us not to exercise for strength.
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Old 05-31-2016, 01:36 AM #3 (permalink)
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Default Re: Exercise

Strenuous, or resistance exercise is designed to cause micro tears in the muscle. This stimulates the muscle to heal that area by invading it with more muscle cells, and by this means we increase our muscle mass.

One of the theories behind being very careful about exercise of this nature is that the nerve that makes that muscle work is dying or dead. This means the micro tears are not able to repair and heal. Causing these tears to the muscle that has no nerve impulse will then cause the muscle to waster faster because it is now injured.

So while it seems a fair thing to say - let's get you exercising and try to build up as much muscle as we can. In fact doing too much of, or the wrong kind of, exercise can give the opposite effect.

There isn't a blanket rule however, as it does depend on the fitness and strength of the muscles the person had pre-ALS. It also depends on which motor neurones are dying off and at what speed. Complicated formula!

For example a PALS who had never done any running or real leg work, then suddenly starts to work on a treadmill and exercise bike, they are likely to find it causes a lot more muscle breakdown than someone who reduces the amount of this they do so that they are getting some exercise. So someone who did an hour every day may find doing a half hour every second day keeps them feeling good, and it isn't straining their muscles much as they are used to this.

The rule of thumb that is most easily applied is about recovery. If you exercise hard and then find you are wiped out for a couple of days, you are doing way too much. In fact if you are wiped out for more than an hour or two, you have done too much.

ROM is great as it keeps everything moving, and helps by gently stretching and moving the joints. When a PALS can't move a limb anymore, another person can move it for them doing passive ROM. When there is a lot of spasticity and muscle wasting, then joints become frozen quickly and this painful, and makes the risk of injuring the person when doing personal care and transfers much higher as pulling on a limb with a frozen joint can cause a tendon rupture so easily.
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Old 05-31-2016, 08:55 AM #4 (permalink)
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Default Re: Exercise

Exercise has been important part of my day, every day, since I was diagnosed December 2013. The real key is not to do too much as Tilliie said

I found the best exercises to be exercise bike or pool. In the beginning I also did light weights, like 1 to 3 pounds. I was used to lifting very heavy weights prior to diagnosis. At this point I only do pool exercises which also provides rom, and I also work with a PT who does range of motion. Stay far away from any PT who thinks you can build muscle as this can be quite dangerous for you. I exercise and then rest for an hour. If I've done too much it is very obvious and I'm wiped out for the rest of the day. Don't do this!

For me the exercise has been good both physically and mentally, but you have to be careful and smart about finding what works for you.
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Old 05-31-2016, 11:13 AM #5 (permalink)
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Default Re: Exercise

Excercise in the pool is great. The water supports you and let you 'walk.'
IGet an appointment with a PT familiar with pool excercise.
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Old 05-31-2016, 11:30 AM #6 (permalink)
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Default Re: Exercise

If you have access to a very warm pool it can be helpful with ROM and just feeling good. Never underestimate the sunlight on your eyes. If possible spend time in the sun....even if it's in a chair doing ROM.
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Old 05-31-2016, 12:44 PM #7 (permalink)
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Default Re: Exercise

I recently participated in a program through our health unit to work on resistance and cardio. Lots of diet information. The program seemed to be targeted at sedentary 60+ women with diabetes. I was the oddball. I found it exhausting and depressing as well. Not only are you losing nerves and you have to do the workout with let's say 60% of your muscle, with reduced breathing everything you do takes more calories. I stopped going, I have more energy without exercising, I am also not reminded how much I've lost, so I'm less depressed.
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Old 05-31-2016, 07:34 PM #8 (permalink)
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Default Re: Exercise

Good advice that I needed -Thank you so much!

Vincent - you understand how I feel about being depressed when I cannot do something. Right now I am trying to get the laundry out of the dryer and sit down to hang it up, but I can no longer do that . It is too easy for me to fall. Last week I could barely do it, but I did. Now my husband is bringing me the hangers and I hang it up. He is willing to do it, but I want to be useful. I have problems with my hands, but I still have some feeling.

I just feel so bad for my husband. He never cooked, cleaned or did laundry. I did it all. I got someone to clean, and my daughter-in-law recently said she would make us meals. My husband is really trying though. Sometimes he forgets to feed me and I get up and try to fix something, but, if I fall, I cannot get back up plus I hurt myself. He then jumps up and apologizes for forgetting. Love this guy!

Hugs to you all,
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Old 05-31-2016, 07:36 PM #9 (permalink)
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Default Re: Exercise

Faith please DO NOT FALL!!!

I totally get what you are saying, but we have had too many PALS literally die by falling. It happens so fast, you can't break the fall, and head injuries have taken too many too quickly.
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Old 05-31-2016, 07:44 PM #10 (permalink)
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Default Re: Exercise

We were told at the clinic that any exertion that takes more than 45 minutes to recover from is too much. As others have said, if it feels good and doesn't exhaust you, then it's good. Once you pass that point, however, you are doing damage

You have limited amount of energy in any day. Once it's gone you don't get it back, and you can't increase your energy level through exercise. An hour on a bike sounds like a LOT to me, but how long do you sleep afterwards?

The first physical therapist hubby tried put an exercise band on his foot. yep, the one with foot drop. It snapped back an nearly took his eye out. That was his last visit there and now he has PT at home for ROM only.
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Old 05-31-2016, 07:57 PM #11 (permalink)
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Default Re: Exercise

I was very happy with warm water therapy. It took a while to figure something out that didn't elicit more spasticity (basically I stood in the water and sort of swirled my arms around and let my legs relax) but I found it really helpful. It was in a group setting with other people at a rehab centre with a variety of CNS and brain injuries. While I did wallow in my own misery due to feeling feeble for part of it, the mild exercise helped with sleep and overall mood due to post-exercise endorphins.
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Old 05-31-2016, 08:24 PM #12 (permalink)
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Default Re: Exercise

Hopefully when I go back to UCSF 6/8 I will be advised of ROM and warm water therapy, and who I will need to see in Reno, NV. I was there all day last month before I was diagnosed, and I think they wanted it all to sink in. All I got was a little diet advice (since I lost 5 pounds) and they do not want me to lose anymore weight.

You're right Tilly, I have to stop doing things in which I can possibly fall. Last year I feed the fish in our pond and was using a cane then. I came so close to falling, and, if I had, it would have killed me with the large rocks or possibly I could have drowned. I then went up to our pool and feel onto the grass and hurt my shoulder (glad it was the grass). A month ago, my dogs came upstairs to our bedroom, and that is not something that is allowed. I forgot I could not walk, got up out of bed (difficult to do now), and fell flat on my face. I then had to crawl down the stairs and was able to lift myself up. I cannot do that anymore.

Wow I'm really sounding negative here. I don't mean to whine and feel sorry for myself. If I have learned anything, bad things happen to good people and you have to deal with it the best you can.

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Old 05-31-2016, 11:14 PM #13 (permalink)
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Default Re: Exercise

No you aren't sounding negative, you sound like you are learning from the falls you have had, or near falls, that have thankfully not caused injury.

Remember it's always more dignified to walk with some equipment, or scoot about in a wheelchair, than to face plant ...
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