Enjoying my memory scrapbook of visits to ALS clinics

Last week I hit a milestone of sorts: my 35th ALS clinic visit.

That’s not to say that medical appointments deserve the same recognition as birthdays or graduations, to be memorialized in a scrapbook. But because ALS has been a dominant part of my life for the past 14 years, I’ve created an imaginary scrapbook of ALS clinic visits. It’s filled with images and memories noting the evolution of my confidence to live with ALS.

Anticipating my first ALS clinic, I imagined it’d be similar to a sports clinic. A large room would be set up with stations where we patients would meet with clinic staff for testing and helpful information. A doctor would make a presentation, and we could mingle and meet the other patients.

Turns out that at an ALS clinic, patients remain in their exam rooms while the staff take turns to come in and chat. In three hours, I saw my neurologist, a speech therapist, a physical therapist, a respiratory therapist, and a dietitian. Whew! I was scheduled to return every three months.

Several visits (and scrapbook pages) later, I realized that the topics missing from every clinic discussion were rehabilitation and recovery.

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My clinic is run by wonderful people who all have the best intentions for their patients. But to me, their assumptions are that my symptoms will progress to my physical decline, so we spend time discussing aids and adaptive devices.

I know that ALS is a progressive condition, but I also know that my professional years teaching wellness and fitness gave me a vast repertoire of skills in mental positivity and adaptive exercise.

As I wrote in the column “The One Thing to Always Bring to the ALS Clinic,” I decided to turn around these visits. Why not take advantage of having all those clinicians and their testing equipment in one room? I thought. Why not use them to help validate my at-home exercise and practice sessions? At each visit, I began asking, “What do you suggest I do to maintain where I’m at right now?”

That changed the game, and I’d leave the clinic with attainable goals and feelings of confidence.

The next few pages of my imaginary scrapbook are filled with fun anecdotes. I found humor everywhere, from the same old rickety chair in the exam room to the physical therapist’s tests that made me feel like I were auditioning for “American Ninja Warrior.” I even imagined that my ALS clinic was a mini-Olympic competition.

A whole scrapbook page is devoted to when I was told I was maintaining my health so well that my appointments were extended to every four months and finally only twice each year. I believed I was helped by the opportunity to write my column for ALS News Today, moderate the ALS News Today Forums, and meet ALS patients online from around the world. My confidence soared.

The most recent entry in my imaginary scrapbook of clinic visits is a photo of a smiling me. I left that appointment feeling grateful. I appreciated my doctor and her clinic staff and how they all played a part in helping build my adaptability, coping skills, and resilience.

That’s the thing about ALS: Each patient has a unique experience and life journey. I’m satisfied with mine; I’m living well with ALS. I believe you can do it, too.

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.