March 26, 2019 at 5:07 pm #11136
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?
April 3, 2019 at 4:37 pm #11209WeirdTimParticipant
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.
April 3, 2019 at 5:05 pm #11213Gregory D KenoyerParticipant
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.
April 4, 2019 at 6:40 pm #11254Kathy EasleyParticipant
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.
April 5, 2019 at 11:03 am #11263SheilaParticipant
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.
April 5, 2019 at 11:59 am #11273
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.
April 9, 2019 at 10:58 am #11361
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!
April 9, 2019 at 11:28 am #11363
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.
April 9, 2019 at 2:26 pm #11368AngieParticipant
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!
April 9, 2019 at 2:48 pm #11369
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 🙂
April 9, 2019 at 8:40 pm #11381
Thank you so much for the helpful hand exercise links, Dagmar.
April 9, 2019 at 4:36 pm #11370Susan BowmanParticipant
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!
April 9, 2019 at 7:53 pm #11379
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. 🙂
April 10, 2019 at 10:35 am #11384
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.
April 10, 2019 at 11:04 am #11389
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. 🙂
April 10, 2019 at 10:51 am #11380
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!
April 10, 2019 at 11:13 am #11390
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. 🙂
April 12, 2019 at 9:48 am #11420
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:
I hope it opens for you!
April 13, 2019 at 8:14 pm #11440
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!
April 14, 2019 at 5:22 pm #11445
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!
April 14, 2019 at 5:41 pm #11446
You are welcome Diana!
As I always say: together, we can learn to live well while living with ALS!
April 19, 2019 at 5:55 pm #11576
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!
April 19, 2019 at 8:38 pm #11577
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!
April 20, 2019 at 5:20 pm #11581
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.
April 21, 2019 at 11:25 am #11589
And here is the skinny on how I practice for my pulmonary function tests:
Here’s my “bubble machine” in action!
April 21, 2019 at 9:52 am #11584
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.
April 21, 2019 at 11:31 am #11590
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 🙂
April 23, 2019 at 6:44 pm #11642
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.
April 23, 2019 at 8:20 pm #11643
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!
April 23, 2019 at 9:07 pm #11644
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.
April 25, 2019 at 3:33 pm #11682
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!
April 25, 2019 at 8:51 pm #11694
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.
April 26, 2019 at 8:52 am #11695
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!
May 21, 2019 at 9:46 am #12077
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?
May 21, 2019 at 12:01 pm #12081
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 🙂
May 22, 2019 at 7:59 am #12102
Just a quick comment on using trekking poles or 2 canes. When I became unsafe with canes, I got a pair of forearm (also called Canadian) crutches. These are much more stable. I still use 2 canes on & off because they are lighter & more handy but not near as safe. My crutches are kind of clunky ones from a medical supply store but I meet a woman occasionally on my walking path who jogs using forearm crutches. Hers are carbon fiber and very light. I have been able to get around (slowly) on these for the last 3 yrs.
June 5, 2019 at 1:22 pm #12261Russell CowgerParticipant
I am still trying to wrap my head around all this exercise and not having enough time. I still jog about 00:11:30 min mile and I’m 5’11” so it is pretty slow. I am trying to work my way back up up in distance again after 3 week break. I was jogging about 2 miles. The funny thing is I almost jog better than I walk with my drop foot. I stretch (sometimes) morning and night my life is still so busy with work that I never have time for myself. I worry if I don’t exercise more that Ill depreciate quicker. I already have hard time on stairs.
June 14, 2019 at 9:18 pm #12359
I discovered Original Strength videos through reading Dagmar Munn’s blog as well as her book. I’ve been doing some of the rolling, rocking and crawling exercises since about mid-March and find them very helpful. I do them to wake up my body in the morning, and I feel so “normal,” at least for a few minutes, after doing them. I believe that doing these exercises regularly may be helping me to retain mobility and flexibility in my back muscles. I also have started doing some of the exercises which are designed to improve neck strength and flexibility.
I started by practicing the exercises which are linked on Dagmar’s blog and then began to explore some of the other OS videos available on Youtube. https://originalstrength.net/videos/
My questions to Dagmar and to anyone else who does OS exercises are:
- Which OS exercises do you do as part of your daily exercise routine?
- Are there specific OS exercises that you do to maintain or improve neck strength and flexibility?
- Are there specific exercises that you do to maintain upper/lower back strength?
- I was amazed at the variety of crawling exercises! I can do the “baby crawl” but have been hesitant to try the others. Are there OS crawling exercises you would recommend?
Thank you so much!
June 16, 2019 at 12:39 pm #12365
I incorporate all of the basic RESETS into my various routines throughout the day:
- Waking up, in bed: rolling, head nods, breathing
- Later on the floor: rocking, crawling, breathing
I like to experiment with the variations shown on their video site, but always do the basics. Yes, I too feel “normal” again after crawling! I walk better, my back is relaxed and posture improved! Although, I am still at baby crawling; I cannot yet muster the strength to crawl with knees lifted (leopard crawl).
Head nods and variations have served me well all these years:
- Lay on stomach, prop yourself up on elbows: chin to chest – lift chin up (repeat), chin to right shoulder – chin to left shoulder (repeat), chin leads head in large circle to right (repeat) – then left (repeat).
- Or while sitting; lean forward, place elbows on knees. Do the sequence described above.
I recommend signing up for their blog. Also on their site you can do a search “low back” or “upper back.”
Here is another resource I often use are the videos by Brad & Bob; two physical therapists who present easy to follow, good exercises – – with a unique, fun delivery! Here, they include 2 good exercises for the neck, along with 5 other essential movements: https://youtu.be/lETF5JRgEN8
Since this discussion stream is getting so long, I will start another topic on specific exercises 🙂
(and include suggestions for low-backs!)
July 7, 2019 at 11:37 am #12605
Dagmar, I have found all of your suggestions about exercise to be very helpful. I start my day with rolling, rocking, head nods and baby crawling from Original Strength. I feel so good when doing them, and sometimes I do a short routine at night as well. I usually do your Youtube chair exercise daily, too.
I have three questions for you:
1) Only about 4-5 months ago, I was able to get up from a seated position (depending on the height of the chair or sofa) without using my hands. Now I must use my hands to assist me and to help with balance. I decided to try the air squats you describe in one of your recent column posts. I’m not sure if I am doing them the way you describe. I position a chair behind me and my rollator in front (brakes on). I hold the rollator handles lightly while bending my knees and lowering myself slightly but not all the way to the chair seat. I repeat this 3-4 times. Then sometimes I lower myself all the way to the chair seat, trying to do it slowly with control in order to avoid that “plop” onto the chair. Am I doing this correctly? I assume that holding the rollator handles lightly is ok. My balance isn’t good enough to do the air squats without holding on to the handles.
I don’t know if it’s possible for me to regain the ability to get up from a seated position without using my hands but I would like to maintain my current ability to get up from chairs without needing assistance for as long as possible. Your air squats proved to be very effective for you, and I’m hoping that doing them regularly might have good results for me as well.
2) Do you have any specific recommendations for Pilates moves that have helped you maintain back and core strength? Are there any Pilates Youtube videos that you recommend for beginners and pALS?
3) Do you think that using a rebounder has had a significant effect on maintaining your mobility over the past nine years? Your videos make it look so appealing and fun! I wonder if you could tell us how rebounding helps foot, ankle, and leg function—maybe even the whole body— compared to walking on a treadmill and riding a recumbent bike.
Thank you so much!
- This reply was modified 2 years, 3 months ago by Diana Belland.
July 8, 2019 at 5:22 pm #12623
Yay, that you begin your day with the OS RESETS! I do too – – and they are such a good wake-up habit for me, I couldn’t start my days now without doing them 😊
1) Sitting and getting up is SO important to retain. Yes, it’s a shock to suddenly notice sit/stand is becoming difficult to do – – I’m glad you are including it in your movement priorities. From what you describe, you are doing them correctly. We all have to adjust for our bodies state of strength; you start out easy and build up. Even “air” squats: never hitting the chair are an OK start! (here’s a link to my air squat column, in case other members want to join in! https://alsnewstoday.com/2019/03/12/squats-als-leg-strength-exercise/ )
Rollator in front, chair in back – – excellent! Holding the handles is fine – – your body will tell you when it’s strong enough to hold hands out in front. But holding them doesn’t affect your leg muscles.
I suggest you do the 3-4, several times a day (I do morning, late morning, early afternoon, before dinner) and try to increase to slowly increase the repetitions over days, or weeks, until you’re doing 10 each time. At this point, you should notice better balance, walking and sitting!
For me, getting up smoothly is still the challenge. But I now practice: “sit-pause-stand” rather than a squat-and-up.
2) For back strength, I suggest Planks – downward facing, up facing and side planks. OS rocking is good too, and if your spine (I remember you had surgery) can tolerate it, this movement from OS is also very good. https://youtu.be/_tDqY29b5RM
3) My rebounder is not doing anything special for my mobility other than – – I do it regularly. Rebounding, treadmill, recumbent bike all provide good full body exercise/movement and good cardio. The magic is finding something you like and will do on a regular basis. I like rebounding (I grew up on trampolines and enjoy the movement) some people don’t like bouncing up and down, but love cycling. So, do that! There have been some studies showing rebounding as helping ankle flexibility and strength… but the same can be said for using a stationary bike (if you have moving foot pedals).
The key is to engage whole body movement, increase breath-rate and heart-rate… and do it regularly 😊 Hope this answered your questions 🙂
July 26, 2019 at 9:23 am #12754
As I mentioned before, within the last year I found that I could not rise from the floor. I finally got an appointment with a PT not related to ALS Clinic. The first visit proved that I will not regain ability to get up independently, however the 2 PT s who worked with me took me through all of the movements of rolling over getting on hands & knees, standing on knees and rising from a knee. They evaluated how much my strength contributed to each movement vs. how much they assisted. They were very positive even though it is agreed that I won’t rise independently. It felt great to go through the movements and get positive feedback. These 2 PT s are working with at least one other ALS patient and believe that they can help prolong function by moving you in ways you can not do alone. I am going for weekly visits and I think it will help both mind and body.
July 26, 2019 at 11:29 am #12755
Bravo John! I am so happy to read that these 2 PTs are helping you with moving!
They seem to be following the fundamental movements (rocking, rolling, twist, crawl, etc.) that I have found helpful through the Original Strength format. I think, I hope, you will begin noticing your body going through these movements easier each time/week, plus, feel better after each visit 🙂 Yay!
November 1, 2019 at 11:51 am #13661hudson bowerParticipant
Exercise is very best thing to do, That’s great habit.
November 3, 2019 at 11:20 am #13672John LopynskiParticipant
I was diagnosed September 20th, 2019. My first symptom was in December of 2018 when my left leg became somewhat numb and weak. The ortho surgeons and neurosurgeons thought is was my spine and so I had minimally invasive back surgery in March. The surgeon admitted he missed decompressing my nerve roots so I still have numbness in my left leg which has gotten weaker. I use a cane today due to the left leg. I have a few questions. Has anyone used a vibration machine that you stand on? I was given a vibrating massage machine that you can stand on and it vibrates at a high speed. It is called the Rejuvenator Plus. I was told that vibrations help muscles. Any experience with this?
November 3, 2019 at 2:21 pm #13677
John, so sorry you had to endure the surgery prior to finally receiving your diagnosis.
I am familiar with the vibration machines you mention. In fact, many physical therapists have them in their clinics. Primary use is to stimulate bone-muscle connection to increase bone density. They are also used to stimulate the muscles as well as improve balance (stimulating proprioceptors in feet). You should probably be using it — especially since you already have one of your own!
But the machine is not a substitute for daily therapeutic movement (range of motion, stretching, light resistance). Done together, you will be following a very helpful health routine 🙂
November 7, 2019 at 10:11 am #13707
I was happy to see an article about the benefits of exercise in ALS this morning on the AlsNewsToday homepage: https://alsnewstoday.com/2019/11/07/exercise-slows-motor-neuron-loss-in-als-mice-but-type-key-study-suggests/
The study was done with mouse models and compares the effects of swimming versus running in slowing motor neuron death. There is a link to the published study which concludes:
The importance of physical exercise in maintaining nervous system health and function has consistently emerged as a key factor of plasticity and cell survival but the mechanisms underlying the exercise‐induced benefits still remain unclear. The present data strongly suggest that some of the exercise effects are specifically and directly exerted on activated motoneurons which probably adapt their proteome, becoming thus selectively more resistant to apoptosis. This concept has been recently substantiated in a spinal‐muscular‐atrophy model mouse in our laboratory (Biondi et al. 2008). Thus, analysing the molecular response of activated motoneurons to exercise and, more precisely, the modulation and activation of the cell‐surface receptors is most likely to constitute a milestone in discovering relevant means of preventing motoneuron death in ALS.
Although I was glad to read this positive conclusion because it supports my own perspective on exercise and ALS, I am uncertain as to how pALS should apply these findings in their own daily routines since swimming and running are no longer feasible for most of us. It would be helpful to see more exercise studies with pALS, rather than mice, doing activities that are actually within their capabilities.
I have had ALS symptoms for two years but I am still able to ride a recumbent bike, walk with a rollator and do Pilates. I will keep on doing these types of as long as I am able, hoping that they can slow progression.
I am interested to read what other Forum members think about the results of this study.
November 7, 2019 at 11:07 am #13709
Just finished reading this article. I found it encouraging as it found mechanisms to explain the observations but as mentioned by Diana mice are not humans. I ran and swam regularly and did my best to continue after lower limb onset ALS was diagnosed. Within a few months I could no longer initiate runningn I confused swimming for about 2 yrs. My kick became useless so I quit laps but kept up aquacise until negotiating changing in the locker room became too much.
I still believe strongly that excercise slows progression possibly explained by some of the observations in the mouse study but also by maintaining a positive attitude. Currently I pedal a spin bike or an adult trike when I can get outside. I use hand weights and therapeutic putty for arms & grip and I have a session with physical therapists 2X/wk. I walk slowly and awkwardly with a rollator or forearm crutches & continue to try to maintain the ability to rise from a chair.
I am always glad to read of positive indications for excercise since, in 2014 when I was diagnosed, there was little encouragement to do so.
November 8, 2019 at 11:49 am #13724
Diana and John, I too had many questions after I read this article. But having read through the actual study, I now understand the premise and results. Unfortunately, the author of the article added to everyone’s confusion ☹ So, let’s unpack this issue:
- There is no controversy regarding the benefits of exercise for pALS. Ten years of published research (on human pALS, not mice) exist. ALS News Today has this page: https://alsnewstoday.com/als-and-exercise/ and, I wrote about it last year: https://alsnewstoday.com/2017/07/18/als-and-exercise-webinar-gives-a-resounding-thumbs-up/ And here is the link to the webinar that reviewed 10 years of research: https://www.neals.org/for-people-with-als-caregivers/educational-webinars/exercise-and-als-a-discussion-of-research-and-practical-recommendations D
- Don’t get hung up on the “running vs. swimming” concept. This wasn’t a study comparing exercise modalities, rather “fast vs. slow” neurons. Mice cannot do Tai Chi (slow) or bicycle (fast); only swim, run or hang on a metal rod (used for strength studies!). So, the running for mice represented human biking, dancing, jumping, etc. – focusing on small (or fast twitch muscle fibers) neurons.
- The study results showed that exercise stimulated the cell walls and prevented motor neuron death. It could not restore motor neurons lost pre-diagnosis (pre-symptomatic), but was beneficial for keeping alive what motor neurons we have left.
This is why I am such a proponent of DAILY moderate & varied exercise movements. Our muscles need the constant stimulation. Diana and John, you have both felt and reaped the benefits of your commitment to daily exercise 😊 Keep it up!
As for the constant question of “but what type of exercise?” The webinar I linked above goes in-depth. In a nutshell:
“These guidelines stress individualized programming and are intended for early stage ALS. The ACSM (American College of Sports Medicine) guidelines recommend aerobic exercise 3 times a week for up to 30 minutes at an intensity of 50–80% of their age predicted peak heart rate. Strength training should be done on non-aerobic days at a low to moderate intensity with a load that allows 8–12 repetitions for 1–2 sets in good form. Flexibility exercises are recommended to be performed 1–2 times every day.”
Above quote from: Dal Bello-Haas V, Krivickas LS, American College of Sports Medicine. Amyotrophic Lateral Sclerosis. 3rd ed In: Durstine JL, of Sports Medicine AC, et al., editors. ACSM’s exercise management for persons with chronic diseases and disabilities, Ch 44. Champaign: Human Kinetics: 2009. p. 419–26.
Note that these guidelines were established in 2009! The recent Canadian study points out that the medical profession is still confused…but that is a topic for another post 😉
November 9, 2019 at 9:23 am #13737
Dagmar, thank you so much for your clarification of this article! Of course, it makes sense to me now after reading your comment that mice can only be tested by activities such as running and swimming!
Now I see that the study definitely supports the kinds of aerobic exercise I am doing: recumbent stationary biking, and recumbent elliptical.
Thank you for the link to the webinar. I plan to watch it this weekend.
November 10, 2019 at 8:34 am #13738
I just read Diana’s and Dagmar’s explanation of appropriate excercise for mice in the excercise study we had recently discussed. I thought “duh why didn’t I think of that😕 they’re mice”, then I thought of researchers in white coats trying to put mice on machines in a mini Planet Fitness and began to giggle. I had think of my mantra fast to stop before my wife became alarmed that frontal lobe dementia had finally set in.😂
November 10, 2019 at 4:07 pm #13739
Haha John! That is a great mental image 🙂 “mini-Planet Fitness”…..I’m laughing along with you.
uh-oh… soggy sheep! soggy sheep! soggy sheep!
August 18, 2020 at 8:32 pm #16157Giselle VargasParticipant
Lots of excellent information here! Thank you all! I am wondering if anyone has used a power plate or body vibrating device? How would this be used for ALS? Any thoughts?
August 19, 2020 at 12:09 pm #16161
A vibrating power plate is traditionally used to enhance the strength of muscles while exercising – – for example: doing leg squats while on a power plate will strengthen leg muscles beyond just doing leg squats on the floor. Just standing still on the power plate for the same length of time, does nothing.
The power plate won’t have a direct effect on your ALS, but may be helpful in maintaining muscle strength that is normally lost due to ALS. I’ve also heard that the vibratory movements are also beneficial to maintaining bone density.
I wonder if any of our members are using this… and which exercise movements they are doing?
August 25, 2020 at 8:23 am #16183Rich DeSpagnaParticipant
good morning dagmar,
i’m interested in what stretching exercises and yoga that you do. i was diagnosed in feb 2019 and fortunately i’m still mobile, but steadily losing my strength and dexterity. the only exercise i get is complete day to day tasks (laundry, dishes, taking out the garbage), which exhaust me. i can’t lay on my back or bend over–i’m unable to breathe if i do. this limits the variety of exercises i can do. any advice or resources you have would be greatly appreciated!
August 25, 2020 at 10:09 pm #16187Autumn Renee PodzunasParticipant
I use ankle weights (2.5 lb) on my hands and do peloton videos with my sisters over zoom. I work on the balance board while they do lower body. Soon I will be able to spend more time exercising. Light of course!
August 28, 2020 at 9:58 am #16202Louise CortParticipant
good morning dagmar,
Could you be more specific about what you mean by “range of motion” exercises? I was never an exercise buff, and the concept escapes me.
Many thanks for all your guidance.
August 28, 2020 at 6:11 pm #16203
Rich – – Your question is a good one and I have a long answer. But it’s something I think everyone reading our forum will benefit from 😊
- Before talking about exercises, let’s focus on your breathing issues. Maintaining the ability to breathe well is a priority for all pALS. Not being able to lay down due to breathing issues, limits your body’s movement potential – – which will only encourage muscle weakness and faster progression.
Sitting or standing – – Are you able to inhale deeply, expanding your ribs sideways and, stomach area outward? Or is all the movement restricted to your upper rib area? The solution is to practice diagrammatic breathing, daily – try for 10 deep breaths/day.
Or… when laying on your back, are you unable to breathe because your tongue falls back and the soft palette has dropped? The solution is to use a small pillow, wedge, etc. to prop your head/tip it forward to help keep your throat open. Then, you can proceed with movements while lying on your back.
Either way, breathing comes first. Here’s my blog post with lots of information and tips: https://alsandwellness.blogspot.com/2020/01/how-blowing-bubbles-helps-me-breathe.html
- Then, even though you are getting incidental exercise which is all those movements we do: dusting, laundry, making the bed, getting the mail, watering plants, etc. – – you are still missing key muscle and joint movements. So, a short routine in the morning or after you’ve rested a bit from the day would be good. Even though the demonstration in this one is standing… it can be done sitting as well:
- What to do? You asked about yoga – – which is mostly stretching & holding one position – – we pALS don’t need to increase flexibility or static strength – – we need “range of motion” and coordination with motion. I modify yoga to be more “flowing yoga” – – holding a few seconds, then moving out and into the position (not fast, like reps with weights). So, keeping you seated in a chair, I suggest you try following along with either of these routines (Me, years ago on TV 😉) Once a day AM or afternoon after you’ve rested up from house duties.
- Range of Motion (ROM) – – Basically, taking every one of your joints through their movement range – – not trying to stretch or increase range – – just keeping your existing range. Like making gentle circles, bending and extending or, twisting. Most times, we’re given a sheet of diagrams showing a PT helping an immobile patient.
This video demonstrates excellent ROM movements while sitting in a chair: https://youtu.be/_Md14Kj4BFE
My routine? 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 (like this video: https://youtu.be/ihR0AZPCo8o Then, 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). After dinner, I get down on the floor (using a chair) to crawl, do bridges, seated forward bend, crunches, back arches (on stomach), and backward crawling.
I hope all that rambling made sense! If anyone wants more or, details, I’m happy to share.
August 28, 2020 at 6:12 pm #16204
Louis – – check out ROM #4 in my answer to Rich above.
September 1, 2020 at 3:57 pm #16223Louise CortParticipant
Yes–got it! The warm-up routine was also welcome.
October 15, 2020 at 11:26 am #16558Dave DahlParticipant
I have been wondering about this very thread. Thanks.
The fatigue is what I hate. Used to be able to exercise like crazy. I will definitely keep working. I was told sub-maximal work. Never too much because that can hurt me. The exercises here will help because all I was told to do was a wall stretch for my legs and some hand exercises.
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