How I raise ALS awareness, even at my ALS clinic

“So tell us, Dagmar, what’s your latest project?”

The question came from my neurologist as we chatted during my recent ALS clinic visit. She asked not only for herself, but for the medical student who was also in the room.

As I prattled on, part of my brain reflected on how after 12 years of clinic visits, I’ve become comfortable helping my doctor educate the many students who shadow her. The way I see it, sharing my perspective with medical students early in their education is a valuable way to help raise awareness of ALS.

Since at this visit, like previous ones, I didn’t have symptom changes or questions for my doctor, we were able to spend the time in relaxed conversation.

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Fielding the queries

What type of questions do medical students typically ask me? Simple ones, like how my ankle-foot orthoses (AFOs) and rollator help me stay physically mobile, and not-so-simple ones, like how I keep my positive attitude after 12 years of living with ALS.

But even when discussing my AFOs and rollator, I feel it’s important to add that maintaining my physical fitness when not using them contributes to my ability to use them better. This opens the door to talking about how ALS changes the way I exercise. Instead of long, tiring periods of daily exercise, I do several preplanned sequences throughout the day.

Plus, when the clinic physical therapist gives me exercises to help improve my gait or maintain my strength, I go home and do them. I don’t do them for three days and quit. I add the recommended exercises to my daily to-do list and check them off when completed.

“So many patients just give up and quit,” my neurologist added. “I know our clinic staff appreciates knowing that patients follow through with our recommendations.”

Creating reasons to live

This segues into the second question, involving my ability to keep a positive attitude. I point out that AFOs and rollators are wonderful, but unless I can find meaning or purpose in my life — giving me things to do, people to see, and places to go — these adaptive tools are of little benefit to me.

My motivation comes from having projects and events on my calendar, things that I can spend time planning and look forward to completing.

I turned to my neurologist and said, “You asked me what my latest project was. Well, this clinic visit is it! Because as you know, I treat my ALS clinic like an Olympic challenge!”

“And then,” I added, “when I go home, I’ll give myself a few days to recover, look at my to-do list, and get to work.”

A few more reflections

I know I’m only one of the many ALS patients the medical students are able to meet during their clinic visits. We each have a unique journey with ALS, a different story to tell, and varied coping strategies.

But I believe that while we’re learning to live well living with ALS, we should also take advantage of every opportunity to raise awareness along the way.

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