OCTOBER 16, 2018

IN COLUMNS, LIVING WELL WITH ALS – A COLUMN BY DAGMAR MUNN.

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.

***