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“It was easy, fun, and I’d do it all over again.” I know those are not the typical words used by someone who just finished participating in a research study, especially one focused on <a href="https://alsnewstoday.com/what-is-als/">ALS</a>. But that’s exactly how I felt last week when I pressed the submit button on my final voice recording for <a href="https://saa.beckman.illinois.edu/">the Speech Accessibility Project</a>.
Readers of <a href="https://alsnewstoday.com/living-well-with-als-dagmar-munn/">this column</a> will know that, because I have ALS, one of my quests is to prevent my <a href="https://alsnewstoday.com/speech-problems/">ALS-related dysarthria</a> from robbing me of my ability to speak. <a href="https://alsnewstoday.com/columns/can-automated-technology-including-ai-help-with-als/">My other quest</a> has been <a href="https://alsnewstoday.com/columns/voice-recognition-study-ai-advancements-speech/">to support efforts</a> to improve how voice-activated devices respond to voices like mine.
Dysarthria feels like having a bad case of laryngitis and a lazy tongue that&#8217;s two steps behind what my mind wants to say. When I speak with family members and friends, they allow me the extra time it takes for me to pronounce multisyllable words or long sentences. But voice-activated devices have no such patience. I’m cut off midword, and the device searches for what it thought I said. For example, if I ask for &#8220;the best restaurants in Tucson, Arizona,&#8221; I often end up with instructions on how to get &#8220;the best rest.&#8221;
I’m sure my fellow sufferers of dysarthria can share much funnier stories than mine about their interactions with voice activation.
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The devices, however, are not to blame, and software designers don’t set out to build systems that ignore certain demographic groups or voice variations. The shortcomings result from how many and what types of voices were used to &#8220;train&#8221; the software. Giving it additional samples of irregular speech helps it recognize and better understand what a wider range of voices is saying.
That’s why when I first read about the Speech Accessibility Project in an <a href="https://alsnewstoday.com/news/university-illinois-speech-project-recruit-als-patients/">ALS News Today article</a>, I said, “Count me in.”
<h3>What happened next</h3>
I began by meeting online with the project’s speech-language pathologist, so she could assess my speech and explain how I&#8217;d make the online recordings. We reviewed the consent form, and she addressed my questions. I learned that I had three months to complete my recordings, but I could go at my own pace, stopping and starting again at the point where I&#8217;d left off.
Once I began doing my recordings, I discovered the sessions were set up as if I were playing an online game, complete with a congratulatory message each time I finished a designated level. The levels varied from containing typical single-word commands such as &#8220;stop,&#8221; &#8220;listen,&#8221; or &#8220;pause&#8221; to phrases like “What’s the temperature in Cincinnati, Ohio?” (I had to take in a big breath of air for that one!)
The Speech Accessibility Project still needs voice recordings from people besides those with ALS. People with other neurological conditions, such as <a href="https://parkinsonsnewstoday.com/">Parkinson’s disease</a>, Down syndrome, stroke, aphasia, and cerebral palsy are invited to apply. If you’re interested in participating, just follow the link above.
Let’s help technology learn more about ALS. If computers learn how to understand us better, I believe we can continue to live well while <a href="https://alsnewstoday.com/living-with-als/">living with ALS</a>.
<hr />
DAN 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.

Using my speech issues to improve voice recognition software

For those of us <a href="https://alsnewstoday.com/living-with-als/">living with ALS</a>, every day can have a stressful event. The key, I believe, is to get through the event and, if possible, <a href="https://alsnewstoday.com/columns/sense-of-humor-vital-living-with-als/">remember it later with humor</a>. Even in a parking lot.
“Let’s circle the parking lot one more time,” my agitated husband said.
“No,” I replied, “I think we’re better off staying put.”
We sat motionless in our van, in the middle of the large accessible parking lot of the Tucson Veterans Affairs (VA) Medical Center in Arizona. Thirty generous spaces surrounded us, and of course, all of them were full. It was hot outside, the inside air blowing from our van’s vents was beginning to feel stale, and my husband was losing patience — fast.
[recommended-reading id=91066]
We were there because he had a few back-to-back routine appointments, and I was following one of my ALS-related anti-stress strategies: <a href="https://alsnewstoday.com/columns/my-go-along-strategy-living-well-als/">to be a go-along</a> whenever the opportunity arises.
I looked forward to my afternoon of sitting on my mobility scooter and waiting in the lobby of the big VA medical center. Besides my favorite pastime of people-watching, I enjoy seeing the various styles of rollators and mobility scooters that roll by. I also relish the quiet time to knit and come up with ideas for <a href="https://alsnewstoday.com/living-well-with-als-dagmar-munn/">my next column</a>.
But first, we had to park the van. Till then, we were stuck playing the parking lot waiting game.
<h3>What happened next</h3>
The game is much like going fishing. Pick your spot, put the line in the water, and wait.
We sat near one line of parked vehicles, and our van’s hazard lights blinked while we scanned for potential movement in our line of sight. A few people walked into our zone, jangling keys and digging through pockets. But they were just false alarms and crossed through to parking lots beyond ours.
Finally, just after my husband wanted to circle the lot, a couple came into view and headed straight to a vehicle parked ahead of us and slightly to the left. We then ever so patiently waited as the woman loaded her husband’s rollator into their SUV, helped him get seated, and seated herself in the driver’s seat. Ignition on, more waiting. Brake lights on. And lastly, the SUV backed up.
At that moment, a white car pulled up next to us and wedged itself between our van and the SUV that was now in full reverse and almost clear of the coveted parking space.
“Oh no,” I remember whispering as the white car boldly drove into the now-vacated space.
My husband jumped into action. Our van lurched forward, and he honked the horn as he rolled down his window to wave his arm in disgust. What followed was much ballyhooing, posturing, and arm waving. The white car’s driver rolled down his window and extended his arm. A passerby, who unbeknown to us had witnessed the whole scene, began waving his arms too and hollered at the driver of the errant white car.
Maybe because our accessible van was much larger than his vehicle, the uproar was intimidating, or he finally realized he&#8217;d broken the unwritten parking lot code of “wait your turn,” the white car slowly backed out and sped off. I stopped holding my breath.
Thankfully, the rest of our afternoon unfolded without further incident.
<h3>Reflection</h3>
On the drive home while recounting our parking lot altercation, we noted the changing social norms. Everyone seems to be in such a rush to get somewhere that they just think about themselves. Cutting in line is rude. If the white car’s driver had politely asked us if he could take that spot because of an emergency or that he was running late, we surely would have let him in.
Then my husband told me that at his first appointment, his initial blood pressure reading was unusually high and needed to be repeated before he left the office. When his doctor questioned, my husband jokingly told him, “I think I have parking lot syndrome.”
His doctor laughed and said, “I totally understand.”
We drove home chuckling. For me, it was another day of looking for the bright side while living with ALS.
<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.

Finding humor while waiting for a space in an accessible parking lot

Adapt, adapt, adapt! 
Readers of <a href="https://alsnewstoday.com/living-well-with-als-dagmar-munn/">this column</a> know that&#8217;s one of my favorite mottos. I depend on it, especially because I <a href="https://alsnewstoday.com/living-with-als-2/">live with ALS</a>. It helps me deal with the condition’s ongoing changes and keeps me moving forward. But sometimes I have to push back. And when that happens, I’m perfectly OK with not accepting change or adapting.
As I wrote in the column “<a href="https://alsnewstoday.com/columns/als-adaptability-art-3-simple-steps/">The Art of ALS Adaptability</a>,” being adaptable doesn’t come naturally for many of us. It’s a skill we acquire, based on our past experiences. If you’ve lived with lots of change, had to adjust to new conditions, and problem-solved your way through various situations, adapting may be easy for you. But if you haven’t had to face many changes, there’s still hope for you. In my column I share a simple three-step method using the prompts assess, adapt, and accept.
<h3>Is it a temporary or long-term solution?</h3>
Sometimes we don’t even recognize how we are adapting. My first <a href="https://alsnewstoday.com/symptoms-of-als/">symptom of ALS</a>, for example, was a weak lower leg and a foot that dragged with each step. I unconsciously compensated by adopting a strange pirate-with-a-peg-leg walk — a workaround that certainly wasn’t working.
Soon, my lower back ached and concerned friends asked if I was OK. That pushed me to see a doctor and led to my <a href="https://alsnewstoday.com/als-diagnosis/">diagnosis of ALS</a>. Plus, I was issued a rollator. Maintaining the ability to walk was so important to me and my quality of life that I focused on adapting and <a href="https://alsnewstoday.com/columns/rollator-acceptance-independence/">learning to love my rollator</a>.
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<h3>This one took a long time</h3>
Although a rollator kept me balanced, the toe of one foot continued to drag with each step. My neurologist referred me to a specialty orthotic and prosthetic clinic for a pair of <a href="https://alsnewstoday.com/columns/lessons-i-learned-from-my-afos/">ankle-foot orthoses</a> (AFOs). They quickly posed the biggest challenge for me in terms of adapting to <a href="https://alsnewstoday.com/columns/lessons-i-learned-from-my-afos/">ALS-related issues</a>.
The AFOs balanced my gait, eliminated the toe drag, and allowed me to walk without becoming tired. Unfortunately, wearing them required a pair of shoes a full size longer and wider than what existed in my closet. I returned to the clinic for adjustments, tried several versions of padding to ease my aching toes, and searched the internet for adult knee-high socks (that didn’t seem to exist anymore). I even began doing exercises to strengthen my legs, and I battled the Velcro closure strips.
All in all, I’ll admit to spending the past seven years getting those AFOs to the point where they felt, as Goldilocks would say, just right.
So it was a complete surprise when, at my <a href="https://alsnewstoday.com/columns/enjoying-my-memory-scrapbook-visits-als-clinics/">recent ALS clinic appointment</a>, my neurologist posed the question, “Would you like me to write an order for a new pair of AFOs?”
My mind raced. New AFOs?
I looked down at the white plastic on my feet as images from the past seven years mixed with thoughts of new shoes, new socks, padding, fittings, and having to learn to put them on, take them off, and walk with them.
“No, thank you, I’m good,” I replied.
<h3>Why I’m not willing to change</h3>
At that moment I joined the many <a href="https://alsnewstoday.com/what-is-als/">ALS</a> patients who don’t want change. Some people fear change because they associate it with loss, risk, or failure. Others resist change because they&#8217;re comfortable with the status quo. That was me. My need to feel in control and live with a predictable situation far outweighed the temptation to own a pair of the latest, whiz-bang style of AFOs.
That’s the thing about ALS. Because it affects each person differently, our reasons to adapt or not are also different. It’s a personal choice. Not wanting to adapt to change is not a failure, but an opportunity to learn about ourselves: our fears, preconceived notions, self-confidence, and sense of self-sufficiency.
How adaptable are you? It’s a question worth pondering. I’m cheering for you because I believe we can live well while living with ALS.
<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, 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.

ALS taught me to be adaptable, but sometimes I push back

Last week I hit a milestone of sorts: my 35th <a href="https://www.als.org/support/certified-centers-clinics">ALS clinic</a> visit.
That&#8217;s not to say that medical appointments deserve the same recognition as birthdays or graduations, to be memorialized in a scrapbook. But because <a href="https://alsnewstoday.com/what-is-als/">ALS</a> has been a dominant part of my life for the past 14 years, I’ve created an imaginary scrapbook of ALS clinic visits. It’s filled with images and memories noting the evolution of my confidence to <a href="https://alsnewstoday.com/living-with-als-2/">live with ALS</a>.
Anticipating my first ALS clinic, I imagined it&#8217;d be similar to a sports clinic. A large room would be set up with stations where we patients would meet with clinic staff for testing and helpful information. A doctor would make a presentation, and we could mingle and meet the other patients.
Turns out that at an ALS clinic, patients remain in their exam rooms while the staff take turns to come in and chat. In three hours, I saw my neurologist, a speech therapist, a physical therapist, a respiratory therapist, and a dietitian. Whew! I was scheduled to return every three months.
Several visits (and scrapbook pages) later, I realized that the topics missing from every clinic discussion were rehabilitation and recovery.
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<h3>A new focus</h3>
My clinic is run by wonderful people who all have the best intentions for their patients. But to me, their assumptions are that my <a href="https://alsnewstoday.com/symptoms-of-als/">symptoms</a> will progress to my physical decline, so we spend time discussing <a href="https://alsnewstoday.com/aids-and-adaptations/">aids and adaptive devices</a>.
I know that ALS is a progressive condition, but I also know that my professional years teaching wellness and fitness gave me a vast repertoire of skills in mental positivity and adaptive exercise.
As I wrote in the column &#8220;<a href="https://alsnewstoday.com/columns/als-clinic-the-one-thing-to-always-bring-with-you/">The One Thing to Always Bring to the ALS Clinic</a>,&#8221; I decided to turn around these visits. Why not take advantage of having all those clinicians and their testing equipment in one room? I thought. Why not use them to help validate my at-home exercise and practice sessions? At each visit, I began asking, “What do you suggest I do to maintain where I&#8217;m at right now?”
That changed the game, and I’d leave the clinic with attainable goals and feelings of confidence.
The next few pages of my imaginary scrapbook are filled with fun anecdotes. I found humor everywhere, from <a href="https://alsnewstoday.com/columns/clinic-chair-humor/">the same old rickety chair in the exam room</a> to the physical therapist’s tests that made me feel like I were auditioning for “American Ninja Warrior.” I even imagined that <a href="https://alsnewstoday.com/columns/i-treat-my-als-clinic-like-olympic-challenge/">my ALS clinic was a mini-Olympic competition</a>.
A whole scrapbook page is devoted to when I was told I was maintaining my health so well that my appointments were extended to every four months and finally only twice each year. I believed I was helped by the opportunity to write my column for <a href="https://alsnewstoday.com/">ALS News Today</a>, moderate the <a href="https://alsnewstoday.com/forums/">ALS News Today Forums</a>, and meet ALS patients online from around the world. My confidence soared.
The most recent entry in my imaginary scrapbook of clinic visits is a photo of a smiling me. I left that appointment feeling grateful. I appreciated my doctor and her clinic staff and how they all played a part in helping build my adaptability, coping skills, and resilience.
That’s the thing about ALS: Each patient has a unique experience and life journey. I&#8217;m satisfied with mine; I’m living well with ALS. I believe you can do it, too.
<hr />
Note: ALS News Today 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.

Enjoying my memory scrapbook of visits to ALS clinics

<a href="https://alsnewstoday.com/what-is-als/">ALS</a> challenges our sense of self and ability to accept change. However, the triggers that motivate us toward acceptance can be different for each patient.
Recently, on the <a href="https://alsnewstoday.com/forums/">ALS News Today Forums</a>, we’ve been having a lively response to the question, “What is the most difficult thing for you to do physically, now that you <a href="https://alsnewstoday.com/living-with-als-2/">live with ALS</a>?” Among the many replies were having difficulty breathing, asking for help, and losing independence. Other forum members identified moving, speaking, and swallowing as being the most difficult for them.
My <a href="https://alsnewstoday.com/symptoms-of-als/">ALS symptoms</a> affect my <a href="https://alsnewstoday.com/columns/als-slow-lane-cruise-through-life/">movement</a> and speech and prevent me from <a href="https://alsnewstoday.com/columns/als-hard-act-swallow-tips/">drinking thin liquids</a>. Although we share having to live with these daily challenges, we’re not all in the same phase of acceptance. Many comments also included feelings of bitterness, frustration, and being seen as different — all feelings I experienced during my first year with ALS. How I eventually conquered them came from an unlikely source.
[recommended-reading id=90100]
<h3>A doggy inspiration</h3>
Shortly after my <a href="https://alsnewstoday.com/als-diagnosis/">diagnosis</a> in 2010, I watched a TV program featuring an animal rescue organization that was rehabilitating dogs with catastrophic injuries. One young dog had to have a hind leg amputated and was learning to run with only three legs. Another young pup’s hind legs were partially paralyzed and had been outfitted with a special wheeled body brace giving the pup the ability to roll from place to place.
Certainly, the medical innovations were impressive, but what held my attention was how these two dogs interacted with a group of “normal” dogs. The two didn’t act embarrassed or self-conscious of their disabilities, nor did they avoid mingling with the pack. And the other dogs accepted these two as if nothing were amiss. The two pups joined the ongoing wrestling and doggy play, proving they still were fun-loving dogs at heart.
At that moment, I decided to channel the attitudes of the pup on wheels and the three-legged dog. I realized that even though my symptoms changed how I would navigate through life, they didn’t change my sense of self. I was, after all, still me.
<h3>That’s the thing about ALS</h3>
ALS may slow down my movements, force me to use a wheeled walker to get around, require I thicken my beverages with a special powder, and make me slur my words. But I don’t feel awkward or insecure, or worry that people are judging me as less than. I’ve accepted my difficulties and adopted the necessary <a href="https://alsnewstoday.com/2018/10/16/als-adaptability-art-3-simple-steps/">adaptations</a>. My focus is on <a href="https://alsnewstoday.com/2019/02/12/living-purpose-projects/">my projects</a>, family, and friends.
Nothing is easy with ALS, and it’s important to remember that attitude has everything to do with how much you can enjoy your life. I remind myself that I can’t always avoid the changes and difficulties that ALS brings, but I can change how I react to them.
Remember, I believe we can live well while living with ALS.
<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, 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 a 3-legged pup inspired me to start accepting life with ALS

I have an imaginary toolkit filled with a variety of <a href="https://alsnewstoday.com/columns/als-stress-toolkit-how-to-build-your-own/">stress-reduction strategies</a> to help me when life’s speed bumps appear. <a href="https://alsnewstoday.com/living-with-als-2/">Living with ALS</a> is stressful enough, but add in TV news, social media, and other minor dramas and I can quickly feel overwhelmed. In addition, I was bored with my current anti-stress tactics, so I added a new strategy to my kit. It smooths out my day and is easy to use — as simple as drawing dots on a piece of paper.
I first learned about this method years ago in the stress-reduction classes we offered at the hospital-based wellness center where I worked. The technique was created by <a href="https://www.amazon.com/stores/author/B000APE9YS/about">Laurel Mellin</a>, PhD, and I’ve adapted it to meet my current needs.
First, I need to explain why this strategy is useful. It aims to counteract our tendency to live with our minds on autopilot.
[recommended-reading id=90052]
For example, back when I used to drive a car (something I’ve had to give up due to my <a href="https://alsnewstoday.com/symptoms-of-als/">ALS symptoms</a>), there were times when I’d arrive at my destination but couldn’t remember the drive itself. We all do it. I’d get behind the wheel, start my journey, and become lost in thought. Stop signs, turns, and merging into traffic were all accomplished safely, but not with my direct attention. I was driving with my mind on autopilot.
Occasionally, my mind would jerk back into the present moment, and I&#8217;d glance at the speedometer and realize I was driving too slowly or inching past the speed limit. Making a quick adjustment, I’d drive on.
I think of this new strategy as my personal speedometer. It’s visual feedback that lets me know I’m inching into the “stress zone.”
<h3>How to</h3>
Halfway down a sheet of paper, I draw a horizontal line from one side to the other. The line represents my body-mind feelings. The space above the line represents feelings of stress and being overly stimulated or tense. Below the line represents feeling sad, tired, or burned out. The line is neutral territory: feeling relaxed, calm, and good. The line also signifies one day: The left side is morning, and the right side is night.
<h3>A tryout</h3>
If you are ready for a practice run, think about yesterday.
Put a dot on the left side of the paper representing how you felt when you woke up. Is the dot on the line, above it, or below it? Then think about how you felt later in the morning and add another dot. Think about later in the day, in the evening, and finally, how you felt at bedtime.
Take a good look at the paper. It’s normal to have gentle high and low points throughout the day, but if you see that the dots are in the shape of a large valley below the line, it may be a sign that you’re <a href="https://alsnewstoday.com/columns/finding-motivation-when-i-hit-why-bother-moment/">experiencing burnout</a> and need to talk to your caregiver, a family member, or a friend.
<h3>A daily check-in</h3>
Now you’re ready to use the technique like I do: in my head while going through my day. Every two hours or so, I stop and think about how I feel at that moment. I visualize the paper and add a dot above, below, or on the line.
The point of this exercise is to monitor body-mind feelings and be able to catch potential stressors early on. Every few hours, I ask myself how I feel and if needed, I take time to adjust my mind, my body, or the situation.
I urge you to try my new strategy. It’s a great <a href="https://alsnewstoday.com/columns/als-self-care-is-vital-for-well-being-activities-wellness/">self-care</a> technique for both <a href="https://alsnewstoday.com/what-is-als/">ALS</a> patients and their caregivers. And it’s one more way we can learn how to live well with ALS.
<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/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.

I have a new tool for reducing stress: Lines and dots on paper

“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

Last week, I received an email from a <a href="https://alsnewstoday.com/next-steps-after-als-diagnosis/">newly diagnosed</a> <a href="https://alsnewstoday.com/what-is-als/">ALS</a> patient asking questions about <a href="https://www.youralsguide.com/mobility.html">rollators</a> (walkers with wheels). “I think it’s time I begin using one,” he wrote, “but I don’t want to. What can I do instead?” I immediately felt empathy and sympathy for his situation because I can remember feeling that way, too.
I’m no rollator expert, but I’ve been depending on one to help me walk for the past 14 years, so maybe I do have some street cred on the topic. Once I got past the initial emotions that were holding me back, I found that using a rollator to help me walk has been essential to my success while <a href="https://alsnewstoday.com/living-with-als-2/">living with ALS</a>.
<h3>My rollator journey</h3>
My <a href="https://alsnewstoday.com/symptoms-of-als/">ALS symptoms</a> began in 2010, and by the end of that year, my neurologist had <a href="https://alsnewstoday.com/als-diagnosis/">diagnosed</a> me. I had weak leg muscles and had fallen a few times. My right foot dragged with each step, and I needed to grab the furniture as I walked through the house. My doctor recommended that I start using a rollator.
Being told I needed one meant I had to accept that I wouldn’t recover from ALS. It was a permanent condition, my new normal. I had lots of negative notions about rollators, such as &#8220;only old people used them,&#8221; &#8220;my friends will think less of me,&#8221; and &#8220;they’re rickety, clunky, and always-in-the-way.&#8221;
But having to be helped up from a fall was no fun, either, so I gave in and bought one.
[recommended-reading id=18754]
<h3>Newfound success</h3>
With a rollator, navigating through our house became easier, and I learned little tricks to add to my safety. At the bathroom sink, for example, I swing my rollator directly behind me and lock the brakes. This transforms it into an emergency landing pad should I happen to teeter backward. Or, when doing my daily <a href="https://alsnewstoday.com/als-and-exercise/">exercise routine</a>, I stand directly in front of a sturdy chair with my rollator parked in front of me, wheels locked in place. I can perform any number of simple calisthenic movements knowing that if I should lose balance, the chair is behind me and my rollator is an easy grab in front.
When out and about, I discovered that my friends were relieved I was using a rollator. They were fearful of my previous tendency to fall and didn’t mind at all that it showed up beside me in our group photos.
Looking back, I realize that the evolution of my mindset from initially <a href="https://alsnewstoday.com/columns/changing-my-rollator-from-foe-to-friend/">disliking rollators to acceptance</a> and even sharing my tips has come a long way. Emotionally, I applied my principles of <a href="https://alsnewstoday.com/columns/adapt-strategy-for-facing-change-self-care/">adapt, learn, survive</a>.
<h3>A-L-S</h3>
I took the time to reflect on my feelings about how ALS has changed my life. I thought about how my ability to walk had been limited, and because I wanted to continue to be socially active, a rollator was the answer. I adapted.
Then I practiced walking with my rollator, learning what I could and couldn’t do with it. For example, rolling through lumpy grass and gravel is treacherous, and I need someone to hold my elbow while rolling along a downhill walkway.
Mostly, though, the more I used my rollator the more I saw its worth. Now I can’t imagine my life without one.
I probably overwhelmed my ALS friend with too many tips and resources on rollators. But I think he appreciated knowing that using a rollator was so helpful for me.
Do you use a rollator, or have you just begun using one? Please share your tips in the comments below, or try a few of mine. Together, we can help each other as we learn to live well 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, 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.

New to rollators for ALS? Here’s what helped me adjust

My introduction to <a href="https://alsnewstoday.com/what-is-als/">ALS</a> followed the same path as many other patients. After months of worry, I was relieved to finally receive a <a href="https://alsnewstoday.com/als-diagnosis/">diagnosis</a>. But that was the tip of the iceberg. I then had to understand what ALS was and how to cope with my <a href="https://alsnewstoday.com/symptoms-of-als/">symptoms</a>, all while trying to access the correct <a href="https://alsnewstoday.com/approved-treatments-for-als/">treatment</a> and therapies. In addition, I was discouraged to learn that there was no cure for ALS and that the disease wasn’t a priority for many medical researchers.
That was the landscape when I was diagnosed in 2010. But in the years since then, I’ve seen a change, thanks to entities like the <a href="https://rarediseases.org/">National Organization for Rare Disorders</a> (NORD).
The organization <a href="https://rarediseases.org/nord-40/">traces its roots</a> back to 1983 and the <a href="https://www.fda.gov/industry/fdas-rare-disease-day/story-behind-orphan-drug-act">Orphan Drug Act</a>, the world’s first legislation incentivizing drug development for rare diseases. Five months later, NORD was established. It was the first national nonprofit to represent all individuals and families affected by rare diseases. NORD even lobbied and helped <a href="https://rarediseases.org/the-orphan-drug-act-turns-40-nord-celebrates-its-impact-on-rare-diseases/">launch the Office of Rare Diseases Research</a> in 2002 at the National Institutes of Health.
[recommended-reading id=39753]
Why does that matter?
It matters because ALS has been classified as a rare disease, and our <a href="https://alsnewstoday.com/forums">ALS community</a> benefits from the many activities NORD promotes. Many medical researchers focus on a single disease, but NORD advocates for collaboration across rare disease communities, promoting sharing of clinical history studies and investigating cross-use of treatments.
<h3>Strength in numbers</h3>
<a href="https://rarediseases.org/rare-diseases/amyotrophic-lateral-sclerosis/">ALS affects approximately 30,000 people in the U.S.</a>; with such small numbers, our awareness and advocacy voice is barely heard. But when we join in with the <a href="https://www.rarediseasesinternational.org/new-scientific-paper-confirms-300-million-people-living-with-a-rare-disease-worldwide/">300 million people representing the global rare disease community</a>, we&#8217;re a powerful voice demanding awareness.
<a href="https://alsnewstoday.com/2019/06/18/changing-perspective-rare-disease/">I&#8217;ve shared</a> how during my first few years <a href="https://alsnewstoday.com/living-with-als-2/">living with ALS</a>, I was jealous of the media attention other diseases received. I felt as if we were competing against one another for limited funding and support. I’ve since come to recognize that as part of a larger community of rare diseases, we&#8217;re working together, for the benefit of all.
And I have to credit <a href="https://bionews.com/">BioNews</a>, the parent company of <a href="https://alsnewstoday.com/">this website</a>, for expanding my awareness of others who are rare. BioNews is a rare organization itself, reporting on more than <a href="https://bionews.com/about/#communities">50 rare disease communities</a>, with an international team of patient columnists, science writers, editors, and support staff.
<h3>Rare Disease Day</h3>
An annual event that NORD promotes is <a href="https://www.rarediseaseday.org/">Rare Disease Day</a>. This year, it&#8217;ll be celebrated on Feb. 29. It’s not only an opportunity to raise funds and awareness for individual diseases, but also a chance to cast a wider net and raise awareness for everyone with one of them.
How do you participate? It&#8217;s as simple as starting a conversation. Did you know that <a href="https://rarediseases.org/wp-content/uploads/2019/01/RDD-FAQ-2019.pdf">1 in 10 Americans have a rare disease</a>? Or that <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5759730/">6,000-8,000 rare diseases have been identified</a>? The Rare Disease Day website has other interesting facts, plus <a href="https://rarediseases.org/rare-disease-day/rdd-resources/">lots of ideas</a>, like <a href="https://www.rarediseaseday.org/downloads/">posting a frame</a> on your social media profile photo.
Join me in the celebration of Rare Disease Day. No matter what illness we have, together we can help one another learn to live well. 
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Note: ALS News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. 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.

Category: Living Well with ALS - a column by Dagmar Munn