2 Things That Make My Life With ALS a Little Safer

Among the many challenges of living with ALS are the physical symptoms of muscle stiffness and weakness. I have both.

During my first year with ALS, I’d wake up and walk into the bathroom doing a good imitation of the clumsy, lurching steps of Frankenstein’s monster. On other days, my legs were floppy, as if I were the Scarecrow in “The Wizard of Oz.” I imagined various scary scenarios of falling hard onto the bathroom floor.

Having taught fitness classes before my ALS days, I knew that 80% of falls in the home happened in the bathroom, a statistic I often stated to the students in my senior fitness classes. Now, I was a high-risk statistic, too.

So, following are two things I began doing that first year, and which I continue to do 11 years later, to make my life with ALS a little safer.

Finding my morning routine

One morning as I struggled to sit on the edge of the bed, a memory flooded through me from the ballet classes of my youth. I remembered how wonderful it felt when we stretched our bodies in all directions. Flopping back onto the mattress, I improvised a few simple movements.

My arms stretched, my legs extended, my ankles rotated, and my ribs expanded. The walk into the bathroom that morning felt much more coordinated.

I did the same thing the next morning, adding a few more twisting, rolling movements to my improvised routine. Again, my body responded by walking with a little more ease. The routine felt good, made sense as a way to help prevent falling, and was fun to do!

You can try it

Before getting out of bed in the morning, take a few extra minutes to experiment with gentle reaches, knee pulls, deep breathing, and body rolling.

My routine has morphed into a full 20 minutes, but just five or 10 minutes of free-flowing movement can be beneficial.

Of course, you should only use a bed that’s wide enough for you to safely roll from your back to your stomach and back again. Plus, have a spouse willing to relinquish their side of the mattress for your new morning routine!

At bedtime

Like many people my age, I’d awake in the middle of the night to use the toilet. But it had become a wobbly walk that was treacherous even with our strategically placed night lights. I told myself, “This has to change!”

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I remembered a young doctor who worked with us in our wellness program. One day, she shared with me how she managed to get eight hours of uninterrupted sleep during her medical residency days. “I retrained my bladder,” she said with a wink.

It turns out that she drank adequate amounts of water throughout the day to stay hydrated. But she reduced her intake of water two or three hours before going to bed. She’d go to the bathroom one more time and call it a night. This simple routine eliminated the need to wake up at night, which disrupted her sleep cycles.

At the time, I thought the concept sounded extreme. But now it made perfect sense, and I was eager to adopt it.

All in all, it took a week before I could make it all the way through the night. My urge to go started happening later and later, and finally shifted to the early morning hours.

Soon I was enjoying eight hours of restful, uninterrupted sleep. And I had the satisfaction of knowing that I had eliminated one more risk of falling.

ALS affects each person differently, and symptoms vary from person to person. It’s important to adapt my examples and experiences to what is best for you. Your doctor, caregivers, and family are good resources, and may even offer more helpful suggestions.

Let’s work together to learn how to live well while living with ALS.

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