Who knew that losing the ability to
roll over in bed was an essential indicator of worsening ALS symptoms? I sure didn’t. That is, not until I was diagnosed with ALS and
learned that a whole host of simple everyday behaviors were included in
the 12-question functional rating scale (ALS-FRS-R)
that my neurologist reviews with me at every ALS clinic visit.
The assessment includes questions like, “Do you use a fork and knife when you eat?” and “Do you sleep with one pillow or two?” But when she first asked if I could roll over in bed, I thought, “Harumph! How silly. What does that have to do with ALS?”
But one night during my first year of living with ALS, I woke up struggling to roll to my other side. The bed covers felt waaay too heavy and moving my legs felt near impossible. I was stuck.
As I lay in the darkness, I
recalled that this problem hadn’t happened since I was a youngster at camp. My
bunkmate had played a trick on me and secretly tucked my blankets in
super-tight. It was a ha-ha moment back when I was 12 years old, but it
wasn’t funny as an adult, especially knowing my ALS was to blame.
So I began a quest to learn why this was happening and how to improve my ability to roll. I crafted a two-part solution.
First, the why
Rolling, or simply flopping over
from our stomach to our back, is a fundamental movement we learn to do as a
baby. It’s one of the building blocks of primitive movement that leads to
crawling, standing, and walking.
Ask any physical therapist about
the value of rolling on the floor and
they’ll probably rattle off a long list of benefits before adding that it isn’t
done enough.
Essentially, rolling improves core muscles, and we must have a strong core and stabilized spine to move our arms and legs properly. These are the same body parts that become weak both from ALS and ALS-related muscle disuse.
Next up, what to do about it.
I am stronger than my pajamas!
Part of my problem was caused by
the combination of the fabric of my nightclothes and the bedsheets that were
creating the resistance that prevented my body from moving with ease.
I’d already been on a mission to swap my day clothes for ones that were light and easy. Now it was time to do the same for my pajamas — no more flannels and thick cotton, only silky nylon pj’s for me.
The same principle went for our sheets, which surprisingly ended up being a good match to my more slippery pajamas. But know that manufacturers vary widely in their interpretation of sateen, percale, and silk, so do read labels and trust your own “touch and feel test.”
Relearning how to roll
There’s no “proper” way to roll.
Heck, babies do it! But we can all use a few pointers, so here are my tips:
· Rolling is
usually practiced right on the floor, as demonstrated in this how-to video. If getting down on the floor isn’t an option, use your bed
instead! A bed that’s twin size or larger and has a fairly firm mattress is a
safe and accessible surface for practicing rolling.
· If you have
mobility restrictions, try a modified version while sitting in a sturdy chair.
Sit tall, look to the right, and twisting, bring your left shoulder toward your
right hip and place your left hand on your right thigh. Repeat to the other
side.
· Always consult a medical professional or physical therapist if you need specific modifications or have questions.
I’ve been practicing rolling almost every day for 14 years now, and I toss and turn a lot — on purpose, and with ease. I’m sleeping like a baby!
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Dagmar Munn
ALS and Wellness Blog
“Go to bed you’ll feel better tomorrow” is the human version of “Did you try turning it off and on again?”
Good Housekeeping
A version of this post first
appeared as my column on the ALS News Today website
Thanks for that very informative x
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