How to sleep better at night with ALS? Practice how to roll.
My experience relearning a baby's skill, along with some tips to make it easier
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 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.
I am stronger than my pajamas!
Part of my problem was caused by the fabric of my nightclothes and the bedsheets that were creating the resistance, preventing me from moving. 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 13 years now, and I toss and turn a lot — on purpose, and with ease. I’m sleeping like a baby!
Give rolling a try, and let’s keep learning how to live well while living with ALS.
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.
Cynthia J Mikesh
You said you "I’ve been practicing rolling almost every day for 13 years now" You have had ALS for 13 year are are still mobile? Please tell this is true. My Husband was diagnosed in Feb. 22 and he is still fully functioning. We thank our stars he is progressing slowly but even the possibility of him still being mobile in 13 years seem like winning the lottery. Please tell us more!
Yes, Cynthia, I have had ALS for 13 yrs - - diagnosed in 2010. I'm still walking with a rollator, getting down on the floor and up again, and can eat, speak, etc. I believe that what I've been doing over the years has contributed to my slow progression. You and your husband may find the posts helpful on my personal blog: ALS and Wellness Blog https://alsandwellness.blogspot.com/2017/09/als-and-wellness-blog-archives.html
Best wishes to you both! Dagmar
The Drs. are Diagnosing me with Bulbar Palsy, ALS. Loss of muscle especially in the throat, mouth, swallowing. I’ve loss much of my voice, depend on my wife and others to communicate. I have excess saliva off and on. Ended up in the ER, last week, because of so much mucos, so hard to eat and drink. They ran again ct scans, exrays , blood work, everything always comes back normal . Over the past 4 years in total 2 MRI, 2 ct scans. Can I ask, how did they diagnose you all, by testing, or obvious symptoms.? We are heavy into many nutritional supplements and eat as healthy as we can. Any thoughts appreciated.
Mike, I am sorry to learn you have ALS. We all experience such different symptoms it is a difficult condition to live with.
My diagnosis was determined following a battery of tests similar to what you had. read more here: https://alsnewstoday.com/als-diagnosis/ Eating healthy foods is a must. I don't take any nutritional supplements since there is no evidence that they have an affect on ALS. This website has good information on a variety of ALS topics, especially nutrition: https://www.youralsguide.com/als-nutrition.html
Best wishes to you. Dagmar