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How Has Your ALS Changed How You Exercise?
Exercising and ALS used to be a controversial topic among patients and their doctors. But the past 10 years of research show that exercise is indeed beneficial for those living with ALS. But, as I’ve discovered over the 12 years I’ve been living with the disease, regarding exercise: it matters what you do and how long you do it.
I used to easily do traditional workouts of 45-min to an hour. Swimming, walking, yoga, and pilates. Now, I follow a modified daily program of breaking exercises up into short bouts throughout the day as well as doing only 4-5 repetitions of a particular movement within those short bouts. So far, this has been working for me — I maintain my energy, have maintained most of my strength, and I feel good afterward.
My questions for you:
Do you do some kind of regular exercise? Is it on your own or does someone assist you? Do you use any fitness equipment in your home and if so, which ones? Have you changed the way you exercise throughout having ALS?
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11 Replies
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I’m transitioning from running marathons to (hopefully) racing in wheelchairs, then hand cycles*. I was walking 3 times a week, 3-4 miles each time. I plan to give that up. I am now going to a track 3 times a week and pushing the racing chair. I also go to PT and will be adding forward hand cranking for 10-20 minutes, and lying-down flat feet presses.
Mostly I plan to exercise in a variety of ways 3-4 days a week and the other 3 days be rest days. I will do this as long as I’m able. That’s the plan, we’ll see what happens.
*I have an entry for the London Marathon in October, and wish to qualify in a hand cycle for Boston Marathon 2023.
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Bravo Bill! You certainly are maintaining your physical activity – – along with a well-thought-out transition plan.
London Marathon in October! And hand-cycling in the 2023 Boston Marathon! Those are some fantastic goals! Go for it 😉
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Thanks Dagmar. I’m trying to listen to my body and so far, other than weakness in my lower limbs, It just seems right to keep a “hard day hard, easy day easy” exercise/training regimen. The goals are what keep me from feeling sorry for myself when daily chores are so hard.
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This is a timely topic for me – thanks for posting. I’m about 9 months into my diagnosis (and 19 months since first symptoms), and I have tried to keep up my regular routine of core/strength training and frequent hiking. I added stretching and swimming after my diagnosis, and I especially enjoy swimming. I’ve recently noticed that I struggle with push-ups and planks as my left arm gets weaker, and I’m tiring more easily during some of the leg exercises and hiking. I’ve cut back on some of my repetitions, and my hiking is much slower, using poles to give me added balance. I appreciate the idea of breaking up my exercise routine into shorter segments.
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I have have to constantly change my attitude, expectations and goals as my body changes. This includes trying to keep up a positive spirit and not berating myself for not being able to do something I was able to do before. I was an extremely active person prior to this disease. My exercise regiment was primarily based in group activities such as yoga classes, swimming laps with my daughter and classes at the YMCA. I was having issues starting in 2018, officially diagnosed in 2020 right when everything was shut down due to the pandemic. I tried working out on my own only to swirl into a state of frustration with myself that I stopped exercising altogether. This in turn lead to depression and a feeling of hopelessness. It took me awhile to understand and accept what my body could and could no longer do. I also had two learn how to be kind to myself and give myself a break if I could not do something. (still a constant struggle) I have only recently been able to create a light workout routine of stretching, light weights and yoga. (There is a wonderful YouTube channel called Senior Shape Fitness that I work out to). I have tried to get back to the pool for water aerobics that I thought quite beneficials, but can only go if I have someone to come along to help me dress. Now that I cannot drive group activities are illusive. So the goal is to keep trying to move without beating up on myself .
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From reading everyone’s responses, I think we “former fitness devotees” have discovered that we now need to make adjustments – – in duration, frequency, and type of exercise. It’s also an ego adjustment too; to not get caught up in comparing what we used to be able to do. Our bodies need daily movement… it doesn’t have to be traditional sport/fitness movements… just move. 🙂
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I walk with a walker do weights go swimming ( we have a pool )
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I was a gym regular, toned and strong, then ALS came along. Now I do physical therapy to keep what strength I still have, very little. In a wheelchair no for 4 months or so, but I do the PT to keep my upper body strength, and I always feel tired and happy after I work out 💪
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Very little exercise any more. Stretching int he morning is about all.
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I fell last week found out I fractioned my right knee fibia neck, the doctor said it would grow back together in a month
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This week, my OT loaned me a recumbent tricycle! I love it because I can go out on my urban street and exercise and use my weak legs as much as they can put out! Now I have to figure out how to walk the dogs with it!
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