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

Strategies and exercise have helped me discover what my body needs.

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, ALS has made my hands too weak to even try.

When my ALS symptoms 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’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.

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 “energy wasters,” I took advantage of daily living hacks and accommodations recommended by my occupational therapist. They were simple hacks, such as getting dressed while sitting down and simplifying my clothes, 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.

Rejuvenate and restore

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 range-of-motion movements. Those keep my muscles, tendons, and joints supple. Plus, they’re relaxing.

Reconnecting brain and body

Also helpful is the series of movements called RESETs, as taught by Original Strength. These are the fundamental movements we all experienced as infants. RESETs follow a baby’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’re strengthening the muscles of our core: shoulders, chest, stomach, diaphragm, and upper, middle, and lower back. We’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 weak from disuse atrophy. 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’s continue to be active participants in the world around us and help each other learn how to live well with ALS.

When Dagmar Munn, MA was diagnosed with ALS at the age of 59 in 2010, she tapped into her nearly 30 years of professional health and wellness experience. She not only follows her own advice but also inspires and teaches others to do the same. In addition to her columnist role, she is one of the moderators for the ALS News Today Forums and writes a personal blog called “ALS and Wellness.” She lives with her husband in Green Valley, Arizona, enjoying finding humor in life’s situations and spending free time pursuing creative projects in fiber arts.

Original article appeared in ALS News Today on 9/26/23. alsnewstoday.com