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Exercise and ALS
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 over the course of having ALS? Are there any online resources that you recommend?
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60 Replies
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The only thing I do is stretching to reiman limber with help from my wife. Any stress, emotional or physical is very bad for us. In the mornings I lay in bed and then sit in my recliner during most days.
Been using RCH4 for one year now and the only measurable progression happened directly after I put my body under stress.
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I get 1.5 hours of ROM 3 times a week.
I’m 90% paralyzed .
Back when I was still mobile, I did light resistance and pool exercise.
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Four years ago we hired a wonderful caregiver that has changed my life. She exercises me every day.
We do breathing exercises, arm, and leg exercises and at the end of our workout, she massages my muscles. It has really been a benefit to my life.
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I have a recumbent bike that I have sort of “jerry-rigged” with stretch bands so I can pedal and do arms at the same time, it helps get some cardio in as well. I don’t do too much at one time as it sometimes feels like my legs are more tired for the rest of the day. I also do stretches to try to keep range of motion for as long as I can. My balance is terrible, I read in one of Dagmar’s columns about rolling for balance so I have been doing that as well…………..it’s a bit difficult on the bed but I do what rolling I am able, I wish I had started when I could still get up from the floor.
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Kudos to you all! Range-of-motion, light stretching and using adapted exercise equipment are all excellent ways to give our joints and muscles movement.
I find I feel tighter and stiffer when I don’t include therapeutic (all of the above!) movement in my day. Upon waking I do 30-min of light rolling, reaching, leg lifts & pulls while laying in bed. Later, before breakfast I do 15-min of what looks like chair yoga. Throughout the day I do my “air squats.” Late afternoons, I take a break for 15-min of standing arm/torso work (chair behind me, rollator in front). Finally, after dinner I do “soggy walking” on my rebounder. BUT – – my first year I only had energy for the chair yoga!…the rest was slowly added throughout the past years only when I felt ready to do more. I would be happy to discuss my experiences with you and share links to resources that have helped me.
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I was diagnosed on March 15, 2019. I’ve seen three neuromuscular specialists all of whom told me to “keep on doing what you’re doing.” I had spine fusion surgery in late March, 2018 so I was used to doing physical therapy routines to strengthen my core and legs. I do back and leg stretches on my bed, leg lifts with 2lb ankle weights, and bridges lying on my back, knees apart, with a firm stretch band just above my knees. I also do clamshells with the stretch band. I used to do balance exercises, standing on one leg at a time for 30 seconds but those have become harder to do. In fact, I haven’t tried them since I got the diagnosis.
For cardio, I walk on the treadmill for a total time of 20-40 minutes but I walk at a 1.5 mph pace and I take breaks between 5 and 10 minute segments. I might stand for 2 minutes or sit for 3-5 minutes before getting back on the treadmill. I also try to get outside to walk with my Nordic trekking poles. I walk for 5-10 minutes and then take a rest break.
I go to the Y about three times a week and ride the recumbent bike for 45 minutes. I then work out on four lower body leg machines but at low weights. My doctor told me to try the elliptical, too. I am very careful to stop when the muscles begin to feel tired. I definitely am not going for the burn the way I used to because I know this can be harmful.
I will start PT and OT on April 15 at my ALS clinic . They have a warm water pool and I am so much looking forward to swimming or whatever I am able to do.
I had carpal tunnel and Ulnar nerve surgery this past year. My EMG test indicated nerve compression but actually it was the ALS I am sure. I do pt exercises for my hands every day, but I have lost a lot of fine motor control in my rh which makes typing difficult. My hand has g0tten much worse over the past five months. The lh is still good.
Does anyone have any hand therapy solutions that might help? Thanks so much!
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That is an impressive daily routine Diana! I like how you are getting good overall body movement but not “going for the burn” the way we all used to. If I could describe my exercise routines; they are “maintenance.” My goal is to maintain what I have for as long as I can!
The clam-shells are what I’ve found best to counteract all the sitting that creeps in plus, these help strengthen and stabilize our hips – – to stand well.
I too get tired fingers from too much typing and for me, the gentle movements from knitting every evening help relax and keep them nimble. But I know not everyone can or, enjoys knitting! So, let me share an excellent hand routine that I also use: Stronger Hands and Happy Hands (when he says “30” I do “10”). Hope these will be of help to you.
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Dagmar, would you mind sharing the links to the exercise resources you talked about?
I need to make exercise more of a priority. I’m still walking with the use of a rollator. I don’t get out of breath from long distances, just super tired! My right leg feels like I’m dragging it through mid, with a brick tied to my foot!
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I know that feeling Angie 🙂 Who knew shoes could be so heavy? … I used to think! Here’s a discovery I made:
I used to force myself to step forward – – heel first/nice stride – – only to drag my foot even more. But the episode of learning to do “air squats-now-chair squats” actually strengthened my hamstrings (back of thighs) and back of hip muscles to where I can now: pick up my back foot high enough so that it swings through on its own. No toe drag! My stride length is shorter (smaller steps) but it is SO nice not to be draggin’ 🙂
You may have to begin with only 1 or 2 like I did. But keep at it and repetitions will increase. Every time you back up to a chair, do an air squat before finally sitting 🙂
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Thank you so much for the helpful hand exercise links, Dagmar.
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I have to admit that regular exercise has never been part of my daily routine. And since my ALS diagnosis it has declined even more. I always had a million excuses–too busy, stiff and immobile joints due to a lifetime with rheumatoid arthritis, etc, etc. Now I have a whole bunch of brand new excuses–muscle cramps, lack of breath, too weak, etc. I am so grateful to still be mobile, so I’m still walking, doing light household chores, cooking, cleaning up. I just do everything much slower than I used to. I do try to do ROM daily, along with very light and easy yoga stretches but thats about it. I would love to follow your lead Dagmar, and I am inspired by all you do during the day. Just wish I could stick to a routine more than a couple of days. Lastly, I feel we are getting mixed messages as whether exercise is even recommended. So, of course, there’s another excuse not to do it!
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But Susan, you are doing really well – – because you are still able to keep your body active through “incidental exercise!” Intentional exercise encompasses fitness classes, going for a walk, yoga, ROM, etc. Incidental exercise is all those movements we do: dusting, laundry, making the bed, getting the mail, watering plants, etc. Basically moving.
My short routines throughout the day are my substitute for not being able to do much incidental movement. Pushing a walker on wheels does not lend to my being able to dust, make the bed or do laundry.
So, give yourself credit! 🙂 Just try to keep moving 🙂
By the way, no more mixed messages about IF exercise (therapeutic movement) is beneficial for ALS – – it is, and 10 years of medical research supports the approval. 🙂
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Hello,
I posted a comment last night which included a link to a journal article. I notice that my post is marked “awaiting moderation.” Is that due to the link I included?
Thank you so much for your help.
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Hello, Diana – – I loved your article! Thank you for sharing it!
Apologies for the delay in having it posted. It was a matter of timing …and human ability 🙂 Yes, your link was flagged (it was an auto thing by the site) but, approving it is a “human thing!” … Amanda (east coast) and I (sort of, west coast), share moderator duties. If you put up a post at night that gets flagged, we might not see it til the next morning. Always feel free to send us a private message if you think something is amiss. 🙂
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In the four weeks since my diagnosis, I’ve been searching online to find articles that show a significant benefit of exercise for ALS patients. I was encouraged by this study: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5895987/
I’d love to find more articles like this. I feel that exercise is the only truly proactive thing I can do for myself–it raises my spirits and gives me the sense that I am less helpless in the face of my illness.
Dagmar, you have been my exercise inspiration! I am trying to talk my husband into buying a mini trampoline bouncer like you have. I have watched your 2015 and 2016 videos on the bouncer and you looked as if you had gained strength one year later!
Maybe your next book should be an exercise manual for ALS-ers!
Congratulations on a great first week with the forums!
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Diana, thank you for sharing this link to a 2018 study on exercise and ALS!
“Among the benefits, an overall improvement of functional independence in all patients, independently of the type of exercise conducted was seen. In addition, improvements in muscle power, oxygen consumption and fatigue were specifically observed in the ALS-EP group, all hallmarks of a training effect for the specific exercises. In conclusion, moderate intensity exercise is beneficial in ALS, helping in avoiding deconditioning and muscle atrophy resulting from progressive inactivity.”
RE: my HealthBounce rebounder – – I’ve found it’s not important to try to “bounce” like the old days. Rather, I get on it and can soggy-jog (the feeling of running), rock in place (balance and posture) and actually find myself doing a physical activity for 20 min. without feeling wiped-out. The safety ring is amazing as a confidence builder. I’ll shoot another video of me on it soon. 🙂
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Good morning!
I have been in touch with Erin Stevens, Development Manager of the ALS Therapy Development Institute http://www.als.net.
In a phone call with Erin last week about my interest in enrolling in their Precision Medicine Program, I asked about the benefits of Pilates for ALS patients. Yesterday, Erin sent me a link to a guest blog post by Andrea Peet who was diagnosed in her early 30s with ALS. I found Andrea’s post inspiring and useful so I thought I’d share the link here:
https://iobt.me/2017/11/06/pilates-als-and-the-rdc-marathon-guest-post-by-andrea-lytle-peet/
I hope it opens for you!
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Diana – – you just mentioned three of my favorite topics! Pilates…Precision Medicine Program…and Andrea Peet!
Pilates is a wonderful exercise modality. Either on the floor or on a Pilates machine with an instructor to guide you. My dance background led me to Pilates, and I went through a teacher training program. Thank goodness I did; as now I am my own student! The emphasis on breathing, body alignment and aligned movement is beneficial for our ALS bodies that need daily reminders of how to move correctly.
I’ll credit Andrea’s blog as the inspiration for me to begin writing my own blog…which open many doors and led to many online ALS-friendships 🙂
I have been in the PMP for over a year now. I recommend it! The monthly check-ins helped motivate me to stick to my routines. Plus, everyone will “ooh and ahh” over your activity trackers! 😉 I wrote about it here.
Keep asking questions! We are all here to support each other!
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Dagmar, thank you so much for your reply! It’s just the encouragement I needed! I’m excited about finding a Pilates instructor or class, and I’ve started filling out the PMP enrollment form. Like you, I’m hoping the monthly check-ins will motivate me to stay on track with PT and exercise.
I loved your blog post about your week “living by the numbers.” Your wonderful sense of humor always lifts my spirits!
Thank you!
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You are welcome Diana!
As I always say: together, we can learn to live well while living with ALS!
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Hello, Dagmar,
Since my ALS diagnosis on March 4, 2019, I’ve been reading your blog posts on ALSNewsToday and your ALS and Wellness Blog. I’ve also read your e-book. The impression I have is that, due to your extensive training as a dancer, Pilates instructor and physical trainer, you’ve been very pro-active in designing your own exercise program and routines over the last nine or ten years, drawing from other sources like Original Strength as well.
I had my first ALS Clinic on April 15 and met only briefly with the physical therapist, who gave me a sheet of ROM exercises. I will meet with her again on April 25. I have told her that I would like to work with a Pilates instructor and she said they did have someone at the clinic who is Pilates trained.
My neurologist has encouraged me to continue with all of my current activities: treadmill, recumbent bike, working with leg machines. He also encouraged chair yoga and Pilates.
I’m wondering how to design an optimal exercise program that can help me stay mobile (using a rollator, cane or Nordic trekking poles) for as long as possible. My question for you and others is: how did you eventually come up with the exercise routines you use now? In what ways are they different from what you did the first and second years? To what degree have your workouts helped you to maintain and even improve strength? Do most people follow strictly the exercises that they are given by their PTs or do people experiment to see what benefits them?
Thank you so much for your guidance!
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Diana,
You asked such good questions! I had to pause and think a bit, but here goes! (I might add on tomorrow if more ideas surface).Looking back, I would say “evolve” is the over-arching theme. Stick to what your body responds to, what your brain likes and allow exercises to evolve with your body. Be open to adjusting and adapting – – as opposed to just giving up (ie., feeling that unless you can do yoga the traditional way, there’s no other way. Of course, we know there’s tons of adaptations!).
By all means, continue doing your current exercise modalities. Maintain an awareness of your energy level, endurance, etc. My first two years I did my normal routines — except for having to adapt for dragging my foot and resulting balance issues.
The biggest change was noticing that a 1 hr. workout was exhausting. But three 20-min sessions interspersed through the day was OK. I also couldn’t handle a workout of a mix of standing, floor, stand, floor… Once I was on the floor, I had to stay there! So I cobbled the workout into a short standing series, a short sitting series and the floor series. (20 min each). Standing was done with a sturdy chair right behind me and my rollator in front. (safety!) Then I could bend, stretch, swing my arms, stand wide, stand narrow, bend over to touch toes, etc. all within my safety area. Getting down to the floor and up again was always done with a chair nearby; I practiced getting up using a chair, door frame and the bed.
I too received a list of ROM exercises from the PT. But the exercises were all shown with a PT helping an immobile patient. I couldn’t relate. So, I decided to make sure I incorporated ROM into my “series.” Basically, it’s: try to take every one of your joints through their range – – making circles works! Circle thumbs, fingers, wrists, shoulders, neck, everything.
Then, my priority is focused on my core – – my entire torso, front and back. Then comes shoulders & hips. Then arms & legs. Finally hand and feet. Because ALS progresses in the reverse order, at the ‘end of the day’ (full ALS progression) I wanted to end up at least with a strong torso (breathing, back, abs, etc.).
With my 20-min time constraint (due to energy) I’ve eliminated a lot of non-essential or duplicate movements. Keep it essential, productive. That will make sense when you’re in year 3+ 🙂
I believe my workouts have maintained my strength, my sense of balance, extended my energy through the day and, in the case of my “chair squats” has increased my leg strength. 🙂 At 9 yrs. I can still hit 98% on my pulmonary function test at the ALS Clinic.
So, I hope all that rambling made sense! If anyone wants more or details, I’m happy to share.
Go for it Diana!
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Dagmar,
Thank you so much for getting back to me so quickly with such a comprehensive answer. It was SO helpful! I’m so glad you advised continuing on with my current exercise routines and doing what “my brain likes.”
You’ve given me a great framework to use to construct my own routines. I, too, want to focus on a strong core. Your pulmonary function test score at 9 yrs is just extraordinary. I scored 112% on my first pulmonary test on March 14. I know I probably won’t be able to maintain that but I’d like to work towards keeping it in the high nineties for as long as possible.
I went to the Y this afternoon, feeling more confident and inspired after reading your post. My neurologist suggested i do the elliptical so I started out my session with five minutes on the elliptical. My husband was standing close by in case I needed help getting on and off. I love the way the elliptical works your whole body, but I am taking it in slow increments…doing just five minutes at a time until I feel can do more.
Then I did the recumbent bike for 35 minutes, taking a five minute rest break after the first 20 minutes. Finally, I did my four leg machines and two machines for the back and shoulders. I kept the weights very light, although my body felt good and my brain said, “go harder!” I try to stop short of what some might call “the burn.” I’m still learning where that happy middle ground is.
Dagmar, thank you again for all of the information in your reply. I’m so grateful for this forum.
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Bravo Diana!
And here is the skinny on how I practice for my pulmonary function tests:
From Balloons to Bubbles: How I Breathe Well with ALS
Here’s my “bubble machine” in action!
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Diana,
When I first was diagnosed I was very active, gym, bike, pool, running. I was an expert skier. I ran through my routines for the Dr. expecting praise and encouragement. The reply was “don’t get hurt you won’t recover”.
I kept going enduring continuous decline. I did get hurt (broken ankle with a 12 week recovery) so I got discouraged. Now I do a little ROM & streaching. I don’t go on the floor as I can no longer get up. My legs only push away, I can’t draw them up to get them under me and get off the floor.
Not much encouragement from providers except for rom & stretching.
Dagmar is inspiring! I was so impressed that she could improve so much with chair squats. I plan to get out of my funk and try to put something to gether following her guidelines.
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John, don’t worry about not being able to get down on the floor – – you can take advantage of lying on your bed mattress as a soft, flat surface. Can you lay in bed and draw your knees up, one at a time? Maybe only 1 or 2 times to start. But moving them helps blood circulation as well as activates the muscles in your lower abdomen. Just pull a knee up, and slide it out flat. Let me know how that goes 🙂
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Hi Dagmar,
I started working on my legs in bed as you suggested. I was doing this sort of excercise before and quit. I was avid about fitness and always working to improve. It is hard to keep at and get worse but I’m reenergised after reading of your success at chair squats and also that you are able to train for the breathing tests.
As you suggested I am pulling one leg at a time to my chest, then both. I can’t get my knees up using my legs. I have to grab at them and pull with my arms. My aductor ? muscles that pull the leg out are gone so when I hold both legs to my chest I can hardly separate my knees. I will keep trying.
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John this is great news! And you know, instead of focusing on the leg muscles that aren’t moving well – – by having to use your arms to pull up and hold your knees/legs – – what I see is that you are also engaging your shoulder muscles, stomach muscles, low back and arms. This has become more of a full-body movement! Which is good!
Again, do a few and rest. I learned that doing “1” is an acceptable starting point 🙂 Set a goal of doing just these few for a full week.
…you are moving!
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Thank you for the encouragement. I’m feeling more positive about working on myself again. There is so much out there that makes you feel excerciseing is futile.
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Hi, John,
I’m so glad you’re working on the leg exercises in bed and that you’re re-energized. You have inspired me. too. That’s what’s great about a forum like this. I started doing Dagmar’s “air squats” a couple of days ago. And I want to get started on her “bubble machine” exercise, too—it looks like fun!
My impression, from the reading I’ve done nearly two months post-diagnosis, is that exercise can be definitely be beneficial. For me, at this stage, the challenge is to work out just how much, how often, and for how long…so glad we have Dagmar to lead the way!
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I’m sorry you have to deal with ALS, Diana but you are off to a great start.
I remember hearing my diagnosis July of 2014. I rambled on about how diverse my activities were and how I intended to keep going. My neurologist at the time made one terse response ” Don’t get hurt you won’t recover”. I didn’t quit and 2 yrs. later I did get hurt, a badly fractured tibia and fibula. I remembered the Dr.’s words and did not want the plates and screws needed to get a proper repair. I was discouraged & ready to give up on my legs. The surgeon called the neurologist I was seeing at clinic who called me and encouraged me get it fixed, go to rehab and continue to work to use my legs. The rehab people were amazing. I did recover and got back to walking on my forearm crutches as before.
I guess I wanted to tell my story but the point is you have to fight negative thoughts. As long as you keep trying, positive people will help.
I recently returned from a pilgrimage to FL which we have made every yr. since I was diagnosed. Obviously I was not the same as the previous year. I was painfully slow on my crutches and resorted to being pushed around in a wheelchair on our outings. I came home feeling diminished and found myself not trying so hard to keep up. Then I began reading Dagmar’s column. I joined the forum and I’m recommited to working on myself. I know I can’t stop this but I have always felt better when pushing back.
Keep going, keep positive and seek out ideas like Dagmar’s to avoid getting stuck.
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Thanks so much for your encouragement, John! I’m working on establishing a regular exercise routine and it really helps to hear from you and others. Reading Dagmar’s blog and watching her videos has been my greatest source of information so far about exercise and ALS. Yesterday, I had my first session with my ALS clinic therapist, and I think we are going to work very well together. She told me to continue with the PT I have been doing the past nine or ten months following my spine fusion surgery (March, 2018) and she has scheduled four sessions of pool therapy for me. She has also put me in touch with a PT who does Pilates. I have four weekly sessions scheduled with her and I hope to be able to continue with the Pilates on a regular basis. My neurologist encouraged me to do Pilates and also chair yoga.
Like you, I know I can’t stop the progression, but I, too, feel so much better when pushing back. I’m trying to establish a routine something like this: stretching/rolling exercises on the bed followed by one of Dagmar’s chair ROM videos, then something using my legs. I alternate between walking on the treadmill at home and riding the recumbent bike at my Y. I also do four leg machines and two upper body machines. The thing to figure out is the fine line between just right and too much.
I think your achievements are amazing. Please keep writing about what you are doing and keep sharing your ideas!
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Hello, Dagmar,
I’m finding it very helpful to review your replies on exercise and breathing from time to time. Sometimes I get discouraged and don’t know whether or not I am finding the right balance of exercise during my day. But I will keep trying…
My question for you today is about your “bubble machine” exercise. Where did you purchase the plastic tubing?
Thank you!
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Hello Diana,
Persistence is the key! I’d love to have a week where I do all my exercise mini-routines exactly when and how I planned them out. But “life” gets in the way – – schedules change, my body feels “off” or I simply lose track of time. However, I do try to at least do “something” everyday and always, listen to what my body needs – – that for me, is the right balance. I’m sure you’ll develop your own “new normal” pattern as well.
As for the tubing… It is a piece of tubing from my husband’s oxygen generator (he uses it when sleeping) every so often, the tubing gets replaced – – I thought, why not re-use it? 🙂 However, similar tubing can be purchased at the hardware store or even the pet shop (aquarium tubing). Just make sure it is large enough in diameter for you to use – – to exhale dynamically through.
I do: 8 slow exhalations (counting to 15 or so each) then, 2-3 fast, strong exhalations. 3-4 times/week.
Hope this helps answer your questions 🙂
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