Learning How to Answer the Question ‘What Is ALS?’

I remember the first time someone asked me, “What is ALS?” It was an awkward moment and the question caught me completely off guard. Why? Because only a few months earlier I had received an ALS diagnosis and was searching for the answer to that very question myself.

“Um …” I stammered. “I have a muscle-neuron condition.” The blank expression on the questioner’s face indicated my answer wasn’t helpful to either of us.

Avoiding reality

Initially, I avoided telling my friends and family that I had ALS. They certainly deserved to know, but my hesitancy stemmed from the unconscious feeling that if I talked openly, it meant my ALS was real and I had ALS.

My first step was to conquer the mental gap between knowledge and acceptance. That involved processing the emotional stages of grief and loss. It’s not an easy task, but it’s essential to learning how to cope with the disease.

Then I focused on trying to understand exactly what ALS is.

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My project of self-educating on all things ALS was challenging, but worth the time. I learned how to live with my symptoms and developed a simple formula for daily living that suits me just fine.

And along the way, I became a lot more comfortable talking about ALS.

ALS awareness

Everyone in the ALS community knows well that our disease desperately needs more funding, treatments, and awareness. I’ve been asked, “Is it the same as MS?” and, “Didn’t they just announce a new treatment that cured ALS?” and, “What about all that money raised in the Ice Bucket Challenge?”

My answers: “No, ALS is not the same as MS. And yes, there’s a new treatment, but it only slows down symptom progression; it’s not a cure. And yes, the Ice Bucket Challenge raised a lot of money. But that was eight years ago and we’re still in need of more funds today.”

For the question “What is ALS?” I know most people aren’t ready for long and detailed technical explanations. I also avoid simple fact-sheet answers. Instead, I try to start a conversation and end my answers by asking, “Did that help?” or, “Do you want to know more?”

A win-win-win situation

I was able to process and accept my condition, provide my friends and family with educated answers to their questions, and encourage ALS awareness. Whether you’re newly diagnosed or it’s been a few years, I urge you to consider following my strategy of self-education about ALS.

• Good advice is readily available. I recommend reading “Sharing Your Diagnosis” by the ALS Association of Texas.
• Friends can be our closest allies, but they may be confused about what we expect of them. For some suggestions, check out my previous column about helping friends help you.
• I know it’s hard to speak up and talk about a disease. Try using the tips I share in “How I Learned to Speak Up for ALS Awareness.”

Together we can help each other 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.