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“Do as much as you can, but be careful. And don’t overdo.” Those were the words of advice bouncing around in my head during the long drive home from one of my first <a href="https://www.als.org/support/certified-centers-clinics">ALS clinic</a> appointments.
I&#8217;d brought a list of questions for my neurologist, including one asking if I should still exercise now that I had <a href="https://alsnewstoday.com/what-is-als/">ALS</a>. At the time, her advice, shared above, seemed logical. But the more I pondered, the more I felt confused. New questions bubbled up, such as what type of exercise should I do? How will I know when I’ve done too much? And what exactly happens at the too-much mark?
Why was I so concerned? Before my ALS and in my youth, I enjoyed gymnastics and dance activities, which led to a professional career teaching fitness. My life was filled with physical movement. I also knew that ALS was a muscle-wasting disease, primarily because <a href="https://alsnewstoday.com/columns/i-have-met-enemy-surprise-not-als-this-time/">inactivity led to atrophy</a>. Thus, flopping down in a chair and doing nothing wasn’t the answer.
[recommended-reading id=22974]
When I was <a href="https://alsnewstoday.com/als-diagnosis/">diagnosed with ALS</a> in 2010, the internet offered little in the way of helpful information about the disease, but studies were starting on the issue of <a href="https://alsnewstoday.com/als-and-exercise/">ALS and exercise</a>. The suggestions circulating in social media at the time were to minimize physical activity to conserve energy and that any exercise would make <a href="https://alsnewstoday.com/symptoms-of-als/">ALS symptoms</a> worse.
Because ALS affects each patient differently and its symptoms vary from person to person, I can only share my personal experiences. They&#8217;ve occurred over 14 years of experimentation and learning to adapt what I knew about fitness to my body&#8217;s progressive needs.
<h3>Setting new goals</h3>
Is there a best type of exercise? Not definitively. The best activity for me was determined by what I enjoyed doing and could do consistently. I enjoyed swimming, for example, but during my first year with ALS the effort required to change into a swimsuit, travel to the pool, swim, arrive home, peel off my wet swimsuit, yadda, yadda, was exhausting.
I skipped more days than I swam. However, I found that if I exercised at home, which I didn’t mind at all, and used hand weights, furniture, and the floor, I kept up my consistency.
Traditionally, the three pillars or goals of most exercise programs are to maintain and improve endurance, strength, and flexibility. <a href="https://alsnewstoday.com/living-with-als-2/">Living with ALS</a>, I discovered I needed new goals.
The goal of endurance turned into learning to accommodate my <a href="https://alsnewstoday.com/columns/als-slow-lane-cruise-through-life/">body’s fluctuating fatigue</a>. Rather than trying to do my exercise routines in one hour, I switched up my sessions to <a href="https://alsnewstoday.com/columns/movement-exercise-daily/">several short periods scattered throughout the day</a>.
The goals of strength and flexibility morphed into performing a series of movements to improve my range of motion. My new priority was to maintain my overall coordination and my ability to do functional activities. These <a href="https://alsnewstoday.com/columns/squats-als-leg-strength-exercise/">included sitting and getting up from a chair</a>, standing, walking, rolling over in bed, and getting into and out of a car.
<h3>Would I overdo it?</h3>
Finally, I learned to listen to my body. No more pushing through fatigue. On some days, if my mind said yes but my body said no, I took note and skipped the exercise session entirely. Funnily enough, “pushing through” was mostly impossible because even if I told myself, “Dagmar, you used to knock out 10 pushups,” I had to be satisfied with a mighty two. As hard as I tried, hitting “overdo” or “too much” was unattainable.
Who knows if my exercise regimen is the reason I’m still walking (with a <a href="https://alsnewstoday.com/columns/new-rollators-als-heres-what-helped-me/">rollator</a>), but I know it certainly contributed. Even though we remain a long way from beating this disease, I’ll keep doing my best to live well while living with ALS. And I hope you will, too.
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Note: <a href="https://alsnewstoday.com/">ALS News Today</a> is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or <a href="https://alsnewstoday.com/als-treatment/">treatment</a>. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to ALS.

ALS changed my exercise regimen, but I haven’t abandoned the habit

&#8220;Oh my, are you OK? Did you fall? Can I help you up?”
Walking into the living room several years ago, my adult daughter was startled to find me on my hands and knees on the floor, huffing and puffing. Twisting to look in her direction, I replied, &#8220;Thanks, but no. I&#8217;m just down here exercising.&#8221;
Visibly relieved, she still gave me a quizzical look, so I gestured to the chair behind me and said, &#8220;That&#8217;s how I get down and back up again.&#8221;
She had every right to be worried. I have <a href="https://alsnewstoday.com/what-is-als/">ALS</a>, and because I need a rollator to help me balance when I walk, seeing me on the floor it was logical to assume I had fallen. But she knew me; she was aware that I used to teach fitness classes and followed a healthy lifestyle. Now that I was <a href="https://alsnewstoday.com/living-with-als-2/">living with ALS</a>, I was applying all that knowledge to my current situation. That included exercising on the floor.
But because of ALS, I had to figure out how to safely get down on the floor and then back up again. So how do I do it? And why?
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<h3>Why do I get down on the floor?</h3>
Avoiding falls is a high priority for me. My age, plus ALS, put me at a <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6398543/">higher risk of falling</a>. Suddenly finding myself nose to the ground is scary enough, and I don’t want the getting back up part to be dangerous as well. So if by chance I take a tumble, I want my body to instinctively know how to curl up into a ball, roll sideways, and push myself up to my hands and knees. From there, either someone can help me the rest of the way or I can crawl to a nearby chair and pull myself up.
Also, exercising on the floor is comfortable for me. I draw on my early years in gymnastics and my knowledge of yoga and Pilates to <a href="https://alsnewstoday.com/news/home-based-exercises-als-patients-may-improve-daily-living/">practice modified versions</a> of each of them. To me, the floor feels safe, offers me room to move, and lets me focus on muscles that I can’t engage when sitting in a chair or standing with my rollator.
<h3>How do I go down and get up again?</h3>
I use a sturdy chair with arms and place it directly in front of a wall. Maneuvering my rollator next to the chair, I transfer my hands onto the arms of the chair and stand in front of it. I take a step back with one foot and a straight leg while bending my front knee, so that my legs are in a lunge. Slowly bending the back leg, I lower that knee to the floor. From this position, I can place my hands on the floor and crawl on my hands and knees to the center of the room.
To get back up from the floor, I kneel in front of the chair and reverse the steps listed above.
This method works for me, but it’s not the only way to use a chair to help you get down on the floor and back up again. There are many variations, so I suggest you ask your physical therapist which method is best for you.
<h3>My tips</h3>
It&#8217;s important to remember never to exercise alone. It’s safer to have someone nearby who can help if you get stuck, have a muscle cramp, or experience other issues. Before lowering yourself to the floor, determine whether you’ll have enough stamina to get up again.
On some days, my mind says yes but my body says no. I listen to my body and skip the exercise session entirely if I need to.
Also, when you&#8217;re at the chair, use a cushion or a mat under your knees and do the floor exercises on a carpeted or padded area.
It&#8217;s been a few years since my daughter was shocked to find me on the floor. Now whenever she visits, she&#8217;ll often join me for a few stretches and back-and-forth rolls. We enjoy each other’s company, and I’m happy I’m able to live well while living with ALS.
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Note: <a href="https://alsnewstoday.com/">ALS News Today</a> is strictly a news and information website about the disease. It does not provide medical advice, <a href="https://alsnewstoday.com/als-diagnosis/">diagnosis</a>, or <a href="https://alsnewstoday.com/approved-treatments-for-als/">treatment</a>. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to ALS.

Here’s how I use a chair to safely do floor exercises

There was a time when I could twist off the lid of a new jar of peanut butter with ease; I always enjoyed hearing that distinctive pop when the lids finally gave way. Pickles, spaghetti sauce, whatever: Those jars were no match for my grip strength and determination. Now, although I still have loads of determination, <a href="https://alsnewstoday.com/what-is-als/">ALS</a> has made my hands too weak to even try.
When my <a href="https://alsnewstoday.com/symptoms-of-als/#Muscular_symptoms">ALS symptoms</a> first appeared in 2010, I remember how I struggled to press the nozzle on a lotion bottle with only my fingers and had to use a full hand instead. In the kitchen, I swore I faced an industrywide conspiracy as plastic sandwich baggies and food storage containers became nearly impossible to pry open. I waged daily battles with the suction of the refrigerator door, now requiring a two-handed, full-body “heave-ho-pull” to open it. And of course, the lid on the peanut butter refused to budge.
It seemed that everything I did was exhausting.
Think of a garden hose, water blasting full tilt onto the yard, when suddenly a kink develops along the line. You’re left holding a hose with nothing but a sad dribble of water. That&#8217;s precisely how I felt.
ALS was my “kink.” Although I knew I couldn’t remove or unravel it, I was determined to find a way to best use the lowered strength I was left with. My strategy focused on the following approaches.
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<h3>Conserving my energy</h3>
First, I became selective about how I expended the muscle energy in my hands. I most needed to type on my computer, grip the handlebars of my rollator, grasp grab bars, and continue participating in my favorite hobby: knitting.
To free myself from the &#8220;energy wasters,&#8221; I took advantage of <a href="https://alsnewstoday.com/aids-and-adaptations/">daily living hacks and accommodations</a> recommended by my occupational therapist. They were simple hacks, such as getting dressed while sitting down and <a href="https://alsnewstoday.com/columns/how-manage-als-clothing-problems/">simplifying my clothes</a>, with no more fighting zippers or fiddly buttons. An electric toothbrush replaced my old manual version, and straws would help me drink beverages without having to grasp a cup or glass.
<h3>Rejuvenate and restore</h3>
My second strategy was to look at exercise. My first impulse was to collect a bunch of online videos and devise routines to exercise the heck out of my hands, movements like squeezing a rubber ball and such. Wrong. I discovered that traditional strengthening exercises created more fatigue and less coordination.
I did find success and relief from doing gentle stretches and <a href="https://www.youralsguide.com/als-range-of-motion-exercises.html">range-of-motion movements</a>. Those keep my muscles, tendons, and joints supple. Plus, they&#8217;re relaxing.
<h3>Reconnecting brain and body</h3>
Also helpful is the series of movements called <a href="https://originalstrength.net/blog/simple-daily-reset-restoration-plan/">RESET</a>, as taught by <a href="https://originalstrength.net/">Original Strength</a>. These are the fundamental movements we all experienced as infants. RESET follows a baby&#8217;s natural physical evolution, from wiggling the belly to lifting the head while arching up to rolling over to finally crawling.
When adults perform a RESET, we&#8217;re strengthening the muscles of our core: shoulders, chest, stomach, diaphragm, and upper, middle, and lower back. We&#8217;re also firing up our brain-motor neuron pathways as well as the system that controls our sense of balance. All these are good things for people with ALS.
These movements also affect the muscles of my upper arms and shoulders, which might over time become <a href="https://alsnewstoday.com/columns/i-have-met-enemy-surprise-not-als-this-time/">weak from disuse atrophy</a>. Who knew that weakness in my hands would lead to me doing gentle, full-body workouts every day?
ALS affects each person differently, and not all therapies have the same effect on symptoms. I’m sharing what’s working for me — not to have you imitate exactly what I do, but to inspire you to listen to your body and discover what it needs.
Let&#8217;s continue to be active participants in the world around us and help each other learn how to <a href="https://alsnewstoday.com/living-with-als-2/">live well with ALS</a>.
<hr />
Note: <a href="https://alsnewstoday.com/">ALS News Today</a> is strictly a news and information website about the disease. It does not provide medical advice, <a href="https://alsnewstoday.com/als-diagnosis/">diagnosis</a>, or <a href="https://alsnewstoday.com/approved-treatments-for-als/">treatment</a>. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to ALS.

ALS affects my hand strength, but it’s no match for my determination

<a href="https://alsnewstoday.com/living-with-als-2/">Living with ALS</a> can be an emotional roller coaster. However, I’ve found that when I round the bend and find humor in a situation, I’m sure to have a smooth ride ahead. Let me share my latest experience with you.
Before <a href="https://alsnewstoday.com/what-is-als/">ALS</a>, my life was filled with moving. I grew up doing gymnastics and enjoyed a happy livelihood teaching classes in wellness, fitness, and dance. But as a person <a href="https://alsnewstoday.com/als-diagnosis/">newly diagnosed with ALS</a>, my mind swirled with images and thoughts about how patients eventually become paralyzed. The prospect of being unable to move made me angry at ALS and my body, and jealous of others who would be able to move when I couldn’t anymore.
These thoughts dominated my thinking and even caused me to avoid watching TV shows that portrayed any type of physical movement. Some of those shows used to be my favorites. But if I watched the dance competitions, gymnastics championships, and Olympics like I used to do, I&#8217;d be left sitting in a puddle of tears.
However, experts say that <a href="https://alsnewstoday.com/als-and-exercise/">exercise is beneficial for people with ALS</a>, so I thought, “What’s the worst that could happen? If nothing improves, I’ll just be right back where I started. I can at least try.”
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<h3>What I did</h3>
Sifting through my old fitness notebooks, I attempted modified versions of each routine. But even the simplest yoga poses and Pilates moves had become too complicated for my body to perform correctly. My <a href="https://alsnewstoday.com/symptoms-of-als/">sense of balance, spatial awareness, and body control</a> were out of whack. Even though my mind clearly remembered how to do a particular movement, my body regarded it as an alien command.
So I thought further back, to my early days in dance and how new and complicated step patterns always made me feel, as if I had two left feet. But with enough practice and time, I found success. The secret was to break down the step patterns into smaller bits, practice in slow motion, and relate everything back to fundamentals. These were easy fundamentals, like doing just a step-step, rock-rock.
I decided to practice only basic movements — very basic movements — such as rolling and stretching on the floor, slow walking forward and backward with my rollator, and even sitting for &#8220;chair dancing&#8221; while listening to music. While I’ve now added many more <a href="https://alsnewstoday.com/columns/movement-exercise-daily/">movements and exercises to my day</a>, these basic movements continue to be the core of my daily routine.
<h3>Aha!</h3>
To my surprise, my daily warmup movements were the same type that dancers and gymnasts do. That aha! moment clicked my brain into wanting to watch all those favorite TV programs again. I’d see the performers prepare and look for new movement ideas.
In fact, a recent televised gymnastics championship prompted a discovery. “I’ve invented a brand-new event: walker beam bars!&#8221; I exclaimed. When I walk with my rollator, I imagine I’m pushing a small set of parallel bars and my path is a 2-foot-wide balance beam. Eyes up, posture straight, elegance and balance. My score? A perfect 10. Take that, <a href="https://simonebiles.com/" rel="nofollow">Simone Biles</a>!
If you’re stuck with negative thinking, try to change your mindset. You just might transform your physical limitations into opportunities! It’s an important strategy for <a href="https://alsnewstoday.com/living-well-with-als-dagmar-munn/">living well with ALS</a>.
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Note: <a href="https://alsnewstoday.com/">ALS News Today</a> is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or <a href="https://alsnewstoday.com/approved-treatments-for-als/">treatment</a>. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to ALS.

How I got unstuck from negative thinking due to ALS

I always love having a good &#8220;aha!&#8221; moment, especially when it helps improve how I manage my <a href="https://alsnewstoday.com/symptoms-of-als-2/">ALS symptoms</a>. Better yet is when I learn that what I thought was a symptom of <a href="https://alsnewstoday.com/what-is-als/">ALS</a> was actually an impostor, the result of something called &#8220;learned nonuse.&#8221; Here’s what happened.
As I wrote in my column “<a href="https://alsnewstoday.com/columns/how-shift-into-als-manual-mode/">How I Shift Into ALS Manual Mode</a>,” when I sit in a chair and want to cross my legs, I have to reach down with my hands to help lift one leg over the other. “You have weak hip flexors,” the physical therapist at my <a href="https://www.als.org/local-support/certified-centers-clinics">ALS clinic</a> would tell me.
Hip flexors are a group of muscles toward the front of the hip. They help move or flex the leg and knee up toward the body, as you do when you march, step onto a curb, or cross one leg over the other.
Why were my hip flexors weak? Well, I thought it was just another part of having ALS. But recently I read how patients with neurological conditions like mine experience weakness in certain muscles that would normally be strong, simply because these muscles aren&#8217;t being called into movement.
[recommended-reading id=80279]
<h3>The slippery slope</h3>
Not using these muscles becomes a habit, so the muscles further weaken and finally atrophy to the point of not responding at all. That&#8217;s something I want to prevent for as long as possible.
It’s important to know that this type of atrophy is different from what happens in ALS from the death of motor neurons. <a href="https://www.sciencedirect.com/topics/psychology/learned-nonuse">Learned nonuse</a>, or disuse atrophy, is from a lack of voluntary movement; for most of us, that happens because we&#8217;re <a href="https://alsnewstoday.com/columns/sitting-too-much-3-tips/">sedentary</a>. I&#8217;ll have to admit, I certainly am, since ALS has severely weakened my feet and lower legs.
<h3>My solution?</h3>
I decided to strengthen my hip flexors by following a strategy I used to accomplish 40 chair squats — by being <a href="https://alsnewstoday.com/columns/2019/03/12/squats-als-leg-strength-exercise/">willing to do just one</a>.
While sitting, I’d raise one knee up off the chair, lower it, and do the same with the other knee. Mind you, I could only lift each knee about an inch. But I knew that was OK. I did two lifts on each side in the morning and two again later in the day. Every time I sat down, I’d do two sets of knee lifts. Soon I could do five lifts, and my knees went higher, too.
Feeling confident, I tried some knee lifts while standing with my rollator. This became my new routine: standing knee lifts plus sitting knee lifts.
The other day I called my husband over to watch and showed off how I could perform a seated knee lift so high my knee touched my outstretched elbow. He responded with a “Wow, that’s great. Keep at it!”
Crossing my legs? That’s easy-peasy now.
Of course, I can’t wait for my upcoming ALS clinic visit in March so I can demonstrate my new skill to my physical therapist. For me, this was another lesson in never assuming there’s no hope — and learning that you’ll never know if you don’t try.
Let&#8217;s strive to live well while we <a href="https://alsnewstoday.com/living-with-als-2/">live with ALS</a>.
<hr />
Note: <a href="https://alsnewstoday.com/">ALS News Today</a> is strictly a news and information website about the disease. It does not provide medical advice, <a href="https://alsnewstoday.com/als-diagnosis/">diagnosis</a>, or <a href="https://alsnewstoday.com/approved-treatments-for-als/">treatment</a>. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to ALS.

Tag: exercise

ALS changed my exercise regimen, but I haven’t abandoned the habit

Here’s how I use a chair to safely do floor exercises

ALS affects my hand strength, but it’s no match for my determination

How I got unstuck from negative thinking due to ALS

What I Thought Was My ALS Was Actually an Impostor Symptom