The Art of ALS Adaptability

Life with ALS often feels like a crash course in adaptability but being adaptable doesn’t come naturally for many of us. However, whether you’re the patient, caregiver, or a family member, I believe you can learn how. Read on and let’s get started.

In my pre-ALS life as a dancer and fitness enthusiast, I thought I was good at adapting to change, but boy, did ALS teach me a few more lessons! By the end of my first year with ALS, I went from walking with the help of a cane to chugging through the drugstore leaning on a rollator while wearing hard plastic ankle-foot-orthoses (AFOs) that made me look like a Star Wars stormtrooper. I was not happy, to say the least.

In my mind, rollators were used in rehab for people who got better — and I wasn’t getting better. I thought the AFOs were clunky and attracted attention. I felt as if all eyes were glued on me. I guess my grumpy expression didn’t help much.

I was not adapting well. I had a negative attitude, I didn’t communicate my feelings, and I didn’t see the adaptive medical equipment as helping my mobility.

ALS patients have a world of wonderful adaptive medical equipment to use, but these won’t help unless our minds are adaptive as well. I recommend following the steps: assess, adapt, and accept.

Assess

• Look at the situation realistically, not emotionally.
• Identify your goal (attend meetings, talk to friends, write down memories) and what challenges keep you from reaching it (weak legs, loss of voice, weak fingers).
• List the options available and how to access them. For example, rollators help with walking, boogie boards help with communication, and eye gaze software helps with typing.

Adapt

• Think big, plan, and don’t give up. If Plans A, B, or C don’t work out, keep going all the way to Plans X, Y, and Z.
• Keep an open mind. Be willing to experiment, think outside of the box, and invent safe workarounds.
• Remember that adapting to something new in your life takes time. Wellness experts often recommend giving 21 days to adopt a new habit, and learning to use adaptive equipment is certainly a new habit.

Accept

• Stay positive. Communicate with your medical team, caregivers, and family. Keep them involved in helping you accept the change.
• Focus on your goal, and how the adaptation helps you to achieve it.

Finally, try to keep your life in balance with self-care. Sleep, nutrition, exercise, and proper medication all help when navigating change and adapting to a new normal.

Practice the art of adaptability so you can live well while living with ALS.

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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 Services, and are intended to spark discussion about issues pertaining to ALS.