Enjoying my memory scrapbook of visits to ALS clinics

35 appointments later, I'm finding laughs and bringing positivity to each visit

Dagmar Munn avatar

by Dagmar Munn |

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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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A new focus

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.


Crystal Sanford-Brown avatar

Crystal Sanford-Brown

Hello Dagmar Munn,
I can totally resonate with your testimony about an ALS patient’s positivity along their journey. I had my 1st ALS clinical visit 2 months after being diagnosed. All the Specialists were so welcoming and supportive of the bright colors I wear. I’m trauma survivor who has become a warrior!
Thank you for sharing your experiences.

Dagmar Munn avatar

Dagmar Munn

Crystal, thank you for your comment. I'm sure other ALS patients will benifit from learning of your own positivity! Keep wearing thos bright colors! Dagmar

Betsy Greenstein avatar

Betsy Greenstein

I really enjoyed reading Dagmar’s article! It had such positivity and would love to be able to connect with her. How can I get her contact info? Thank you!

Dagmar Munn avatar

Dagmar Munn

Hello Betsy, Thank you for your kind words. I will follow-up with you :-) Dagmar

Jill Kreitman avatar

Jill Kreitman

We used to work together at St. Luke's in Cedar Rapids. I was diagnosed with ALS a week and a half ago and Carol S. thought I should reach out to you. I'm still waiting to hear from the U of I for my first clinic visit and am definitely in the shock and the sky is falling stage.
Hope to hear from you.

Dagmar Munn avatar

Dagmar Munn

Jill, hello again after all these years! I am so sorry to learn that were diagnosed with ALS. I will contact you pronto... if you don't see my email, you can also email me via my blog ALS and Wellness https://alsandwellness.blogspot.com/2015/01/welcome.html, just fill out the subscription box on the right side - - I'll receive your email that way. You have my support and I am thinking of you! Dagmar

janis a avatar

janis a

Thank you for your work. It really helps. I was diagnosed with bulbar in July. Other than slurred speech ( which is 100% intelligible) and slowed eating, nothing much has thankfully happened. I wish I didn’t get tired, but I listen to my body and rest when needed. I think having an end plan is the most important thing to me because I have a great living life attitude. My personal decision is no trach and if I can’t move, I want hospice and morphine. I have been so blessed for my 74 years I am grateful.

Dagmar Munn avatar

Dagmar Munn

Dear Janis, ...you are only 1 year older than me :-) and you seem to have less ALS symptoms than what I live with. Slurred speech, slower eating, and feeling tired are certainly not easy to bear, but if you are able to walk, use your arms, and breathe OK - - then that's a plus in my way of thinking. I'm guessing that you are spending time pondering "what if" and imagining worst case scenarios. A trach, hospice, and morphine might not even be in your future. Getting stuck in a negative thought loop is frustrating and wastes the time you have "now." Perhaps this column I wrote will be of help. https://alsandwellness.blogspot.com/2022/08/banishing-my-als-thought-loops-and.html Have you discussed your feelings with a family member or your ALS team? They can be good sounding boards and can support your need to express your thoughts. I appreciate hearing from you. Dagmar

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