From clothing to handwriting, I’m still adapting to ALS and cultural change

ALS has changed the way I do everyday tasks. While I had to adopt some changes quickly — like giving up my driving privileges and no longer preparing meals — others crept in over time, like changes to the clothes I wear and my handwriting. What I found interesting, however, was why I didn’t notice my own transformation at first: It felt as though everyone around me was making the same shifts.

I used to buy and wear clothes that caught my fancy. Now, living with ALS means choosing comfort and ease over the latest trends. I ditched the buttons, zippers, and fussy closures, filling my closet with loose-fitting, pull-on shirts and elastic-waisted pants. Even though dressing myself became much simpler, I secretly worried that my forced simplicity would make me stand out.

I needn’t have worried.

During a visit to my local bank, I was surprised to find all the employees clad in business-casual attire. From the tellers to the manager, polo shirts, elastic-waisted pants, and flat slip-on shoes ruled the room. In fact, it was a challenge to distinguish staff from customers.

Riding in on my mobility scooter, I felt good knowing I could blend right in. Comfy, functional clothes are here to stay — for everyone.

Recommended Reading

Oct. 1, 2026 News by Marisa Horak, MS

ACT for ALS reauthorization bill awaits president’s signature

Learning to write right

Another subtle shift involved my handwriting. I always took pride in my clear lettering and swoopy cursive signature. But as muscle weakness set into my hands, gripping a pen became nearly impossible. My shaky signature looked more like I had signed my name in the middle of an earthquake. I wondered if the hours I spent typing my column rather than writing in longhand contributed to the scrawl.

Handwriting is tracked on the ALS Functional Rating Scale (ALSFRS-R), making it a standard query at every clinic visit. Question No. 3 asks: “How’s your handwriting?”

“You mean texting?” I usually respond, pointing out that practically no one writes by hand anymore. I remind my neurologist that while this question was standard years ago, we now push buttons instead of pencils. We send emails, digital cards, and instant messages.

“Good point,” she answers with a gentle smile, firmly handing me a ballpoint pen. “Let’s try writing your name.” I attempt it, but I have to admit my signature has degraded over time.

Instead of giving up, I decided to give my hand another chance. Traditional strengthening exercises create more fatigue and reduce coordination, so I skipped those. Instead, I watched intently how other people held a pen while writing.

I discovered that few people still use the traditional thumb-and-two-fingers tripod grip taught in elementary school. What’s more, most people didn’t have great penmanship either — we really are all typing too much.

I began experimenting with different grips until I had an aha moment. I formed a tight fist with my thumb on top, resting the pen between my index and middle fingers, right near the knuckles. Instead of relying on my fingers to move the pen, I used my wrist. Now, my lettering is steady, round, and remarkably legible.

Sometimes, the changes we make to navigate life with ALS mirror broader cultural shifts. We are all adapting to modern life. Finding those common threads motivates me to keep learning how to live — and write — well with ALS.

If you have experienced clothing challenges due to ALS, searching “adaptive clothing” online offers plenty of good ideas. Helpful resources include Buck & Buck and Silverts Adaptive Clothing and Footwear.

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.