The Power of My ALS Role Models

Dagmar Munn avatar

by Dagmar Munn |

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Do you have an ALS role model? I do. I have a whole collection of ALS role models, and each one helps me power through my day.

I’ve always believed in the importance of a role model; someone whose success or behavior sets an example for me to follow. Someone who is already doing what I want to achieve.

During the first years following my diagnosis, it was difficult to find someone to be my ALS role model. Not an ALS hero, mind you. We have plenty of heroes, including fitness industry pioneer Augie Nieto, former football player Steve Gleason, and, of course, Stephen Hawking.

But finding other patients who shared my mindset and goals — or were already on the path I wanted to follow — was quite a challenge! No one else in my community had ALS, and those at my ALS support groups were on different paths.

I felt a little lost, and it was difficult to stay motivated.

As much as the world bemoans the intrusiveness of the internet, it was the answer to my problem. Slowly, through Facebook groups, the ALS News Today Forum and my blog, I found like-minded patients around the world. My circle of ALS friends stretches from Ohio, Texas, New York, the United Kingdom, and back to where I live in Arizona!

We’re friends who can stand in as role models. We check in, make sure we are all following a path of common sense, and cheer for one another.

I recently added a new role model to my collection. Cathy Cummins was one of the featured ALS reversals taking part in an online conference I watched. I related to her personal story, values, and attitude.

Cathy was diagnosed with ALS at in 2008 at age 44. At the time, she was a chiropractor who practiced judo. She employed a combination of holistic and traditional approaches to her ALS; her focus was physical and emotional.

Even as her symptoms worsened and she relied on a power chair for mobility, Cathy qualified as an alternate on the 2014 Sochi Paralympic wheelchair curling team. Shortly after the trials, she was disqualified from the team because her symptoms had improved so much. She was no longer “disabled enough!” Fortunately, a rule change allowed her to stay on the team.

I don’t dream of participating in the Paralympics, but I do admire Cathy’s tenacity, spirit, and “let’s try” attitude. We both believe that stress reduction, staying positive, and keeping mentally and emotionally healthy are essential to our mental healing and living with ALS.

So, I’ll ask again. Do you have an ALS role model?

Find one or two ALS patients who are doing what you want to achieve. Someone who inspires you to power onward.

Because I believe that with an ALS role model on your side, you can live well while living with ALS.


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.


Susan Land avatar

Susan Land

How do I connect with Dagmar Munn

Dagmar Munn avatar

Dagmar Munn

Hi Susan - - I sent you an email :-)

Diana Belland avatar

Diana Belland


You are a wonderful role model for me and for so many of us! I discovered the website ALSNewsToday a couple of weeks after my ALS diagnosis in March, 2019, and your wonderful column. Your column led me to your e-book, your blog and your videos. One of the first things my husband and I did together was watch your video, "Checking In."

Your words gave me courage, hope and a reasonable path to follow, along with a sense that there were things I could do to manage my condition and that I didn't have to succumb to a "victim mentality."

I'll never forget my initial surprise in coming across your column. "Living WELL with ALS? How is that possible?" I asked myself. It seemed like an oxymoron. But you've shown us how it's possible to live with courage and humor while facing the challenges of ALS.

Through the Forum which you started last April, I've found other role models, one of whom is a wonderful pAL named John whose contributions to the Forum and whose online friendship I enjoy inspire me to "keep on keeping on."

I, too, was struck by Cathy Cummins' attitude and tenacity, so I'm adding her to my list ALS role models!

Thank you so much for all you do, Dagmar!

Dagmar Munn avatar

Dagmar Munn

Thank you for your kind word Diana! I am proud and happy we connected and discovered we are in the same "tribe." :-)

John Russell avatar

John Russell

Well, Dagmar, in thinking about what you just wrote, I'm afraid that for me the role model responsibility falls on you.

Dagmar Munn avatar

Dagmar Munn

We are each holding each other up :-) Your friendship and attitude bolster my own :-)

Jonathan Maddock avatar

Jonathan Maddock


Bill avatar


I find the ALS/MND community in PatientsLike Me are a communal role model to me. The many people who discuss their daily lives, daily challenges, successes, even failures provide a realistic idea of how pALS live their daily lives enjoying life to their fullest extent allowed by our disease. I don’t find the idea of superachieving role models appealing. I admire anyone succeeding to the extent they can but more admire the ordinary struggle.

Paula Volpicelli avatar

Paula Volpicelli

Another great article! Thank you for being there for me! ALS can be lonely but I fight everyday to overcome those feelings. Diagnosed 6 years and counting. I’m still walking and talking. My faith has been my strong hold.

Diana Belland avatar

Diana Belland

I'd like to add Rick Jobus to my list of ALS role models. Reading Rick's columns shows me that it's possible to stay intellectually involved and fully engaged with life despite significant loss of physical abilities. His thoughtful and informative writing continues to inspire, educate and support our ALS community. I am striving to maintain my mobility for as long as possible, but if I eventually lose my ability to walk and talk, I will try to follow Rick's example by attempting to remain active in the ways he has managed to do so well for so many years.

Claudia C. avatar

Claudia C.

Hello Dagmar,
My husband has recently diagnosed with ALS and I was wondering if the St Luke's Center for Health & Well Being you mentioned is still treating patients. Thank you!

Dagmar Munn avatar

Dagmar Munn

Hello Claudia, I'm sorry that your husband has learned he has ALS, your concern for him shows me you will be a loving and supportive caregiver.

The answer to your question is: no. St. Luke's Center for Health and Well-being is where I worked prior to my retirement and having ALS. It was a department of St. Luke's Hospital who closed the department several years after I left. Alas, it is no more.

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