My Week of ALS Milestones, Plus a Special Honor for My Father

Dagmar Munn avatar

by Dagmar Munn |

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I’m all in when it comes to celebrating milestones, and as many of my readers know, I’m a glass-half-full person. So when June arrived, I didn’t have to look far for my first reason to celebrate.

Happy 5 years to me!

This month, I’m celebrating the five-year milestone of writing my column for ALS News Today. My original goals for this column in 2017 were to share my experiences living with ALS, along with a bit of humor, motivation, and wellness tips. Now, 208 columns later (whew!), readers consistently tell me that what I’m writing is helpful, and I should keep writing more of the same.

I want to share a big thank-you to the editors here at BioNews, the parent company of this website, for turning what I write into a polished product. And thank you, too, to the patients, family members, friends, and caregivers for your continuing support and helpful feedback.

Do I think I can write 200 more columns? You bet I can! I believe the future for the ALS community is always improving. Paradigms for ALS research are shifting, and ALS patients are living longer with quality lives. I want to write all about this and more.

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A Diagnosis, Prom Night, and Two Special Strands of Pearls

Happy haircut

I just had a haircut that helped me hit a personal milestone. Here’s how:

I’ve written much about the love-hate relationship I have with the ankle-foot orthoses (AFOs) that help me walk. They’re a little heavy and clunky, but they work.

I don’t wear them at home because I spend so much time sitting at my computer and I don’t have to cover long distances while moving from room to room. But I do wear them to help me navigate the uneven terrain of parking lots and indoor places, like the shop where I get my hair cut. My AFOs are a visual reminder to the people scurrying about to give me a wide berth.

My personal goal is that each time I walk in my AFOs, I want them to feel lighter than the last time I put them on. It’s a way to validate my at-home exercise and practice sessions. And ta-da, I walked tall and felt my muscles working. Granted, I still had a little toe drag, but I reminded myself that I’m proving that my home exercise is indeed helping.

A family celebration

This month, I’m also excited about a special honor being given to my father, George Nissen. The International Gymnastics Hall of Fame, in Oklahoma City, is posthumously presenting him with its International Order of Merit award for his many contributions to the world of gymnastics.

Unfortunately, my husband and I won’t be attending the ceremony, as my ALS makes traveling too difficult. But a dear friend and his wife will go on our behalf and be my voice by delivering the acceptance speech I wish I could have made. I’m so grateful for friends who help me feel connected and avoid blaming my ALS for missing important milestone family events.

Does my June include more milestones? I hope so. And I hope yours does, too. If you think you don’t have any, create them. It’s OK and will keep your mind looking for the positives in life. Together we can learn to live well while we live 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, and are intended to spark discussion about issues pertaining to ALS.

Comments

Ronni Wheeler avatar

Ronni Wheeler

Good Afternoon Dagmar. I was diagnosed with ALS two weeks ago. I signed up for your newsletter and I love how you are such a positive person. If I read this correct, you have been dealing with ALS for almost 12 years?

Can you please tell me what drugs you are on. What stage are you in your ALS journey?

Thank you,, Ronni

Reply
Dagmar Munn avatar

Dagmar Munn

Hello Ronni, I am sorry to learn you have ALS - - but you are doing the right things by researching, learning from others, and using trusted resources like the ALS News Today newsletter.

Yes, I have been living with ALS for 12 years now. I am taking the standard dose of Riluzole (50mg/2xday) - - it was the only ALS medication available back in 2010 - - and have taken it for the past 12 yrs. No notable side effects. I take no other medications. My current symptoms: I am able to walk (with the help of a walker w/ wheels), have "some" swallowing issues, and have slow speech.

As for a "stage" - - ALS affects people differently and symptoms progress at different rates, so in reality we don't fit into neat little boxes...or stages. I would say, I'm at the stage where I have accepted my condition and choose not to let it dominate my life. I have goals and projects and accomplish them while adapting to my body's ALS.

Besides the ALS News Today site, you can find more of my articles on my personal blog: ALS and Wellness Blog (https://alsandwellness.blogspot.com/2015/01/welcome.html) and here is the index to all my posts: https://alsandwellness.blogspot.com/2017/09/als-and-wellness-blog-archives.html

Best wishes to you, Dagmar

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