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Exercise and ALS
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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.
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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.
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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!
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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!)
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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!
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Hello Diana,
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 🙂
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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.
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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!
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Exercise is very best thing to do, That’s great habit.
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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?
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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 🙂
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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.
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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.
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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 ?
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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.
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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.?
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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!
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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?
thanks,
Giselle
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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?
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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!
thank you!
-rich
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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!
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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.
Louise
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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.
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Louis – – check out ROM #4 in my answer to Rich above.
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Yes–got it! The warm-up routine was also welcome.
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