Among the various ALS resources out there, this one’s a game changer

Columnist Dagmar Munn unpacks a new ALS News Today resource

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by Dagmar Munn |

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I like collecting buzzwords. These are the popular words or phrases that weave their way into and out of our language every year. In fact, I think writing this weekly column for the past seven years has sharpened my sensitivity to trendy jargon.

Some are fun to use and conjure up colorful images, like “deep dive” and “low-hanging fruit.” Others have become overused, and I hope they fade away. For example, I cringe every time I hear a TV pundit mutter, “That being said.” Another on my hit list is “game changer.”

It’s popping up everywhere these days — from describing people to social media to tech innovations, it seems that game changers surround us. Ugh!

But here I am, joining the masses and having to admit that I’ve found what can only be described as a game changer for the ALS community. It’s a new series of articles here on ALS News Today titled “ALS roadmap: From early treatment to informed choices.” Here’s why I’m on board with it.

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Voicing my approval of a mental health resource for those with ALS

Our family game night

I’m all too familiar with how game changers work. As I wrote in a 2018 column titled “The ALS Game Board of Life,” I used a childhood memory to help me cope and build mental resilience after I was diagnosed with ALS.

The memory was of a special rule my father added to the board games our family played together. At any point midgame, he had the power to call out, “Rotate the board!” We dutifully complied by carefully turning the board halfway around. My winnings or points sat with another player while I now had another person’s scores in front of me.

It was a valuable lesson that in life, the game board always changes. In other words, it’s something out of our control, we can’t stop it, and no amount of begging brings the old positions back again. We have to move on, making the best of our changed circumstances and new perspectives.

That’s exactly what ALS did for me. I chose to play on, but it would’ve been much easier to navigate the potholes I came across if I’d had a map tucked under my arm.

Finally, a road map

The “roadmap” series has seven topics that explore a range of topics, including the importance of a care plan tailored to each patient’s specific medical needs and common myths about ALS and the truth about each. Other topics include the importance of early intervention, navigating insurance, and the next steps to take after an ALS diagnosis.

One of the biggest frustrations I encountered during my first year with ALS was locating information explaining exactly what ALS is. That was in 2010, and I had to rely on books and other printed material, most of which was out of date by the time it was published. This new series offers up-to-date information along with additional helpful resources, if you care to take a deep dive.

Here’s the thing: Having ALS is a game-changing, and bad, life experience. We have to use our grit and might to forge ahead. Having a road map to follow is a game changer, for sure. I urge you to check out this easy-to-access, low-hanging fruit.

Let’s agree to play on and learn to 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, and are intended to spark discussion about issues pertaining to ALS.


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