Learning ALS self-advocacy involves being a little pushy

I’m not a pushy person. OK, maybe I’m pushy when I really have to be.

Usually, I’m willing to adapt, adjust, and endure the many small daily challenges that come with living with ALS. But when it comes to lacking the proper modifications for my specific symptoms, I’ve learned to push back. Being a strong advocate for myself isn’t selfish; it’s the only way to live smart with this disease.

I first realized the need for self-advocacy while recovering from a simple common cold. Most of the symptoms had vanished, leaving behind a stubborn, nagging cough. Fed up with having to depend on what seemed like a bottomless box of cough drops, I headed to a local walk-in clinic, where I was diagnosed with early bronchitis. I explained that I have ALS and mentioned that one of my symptoms is dysphagia, and I can’t swallow thin liquids. For a moment, I felt heard.

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A painful pill to swallow

After the obligatory detour to the pharmacy, I arrived home and eagerly swallowed one of the tiny pills. To my horror, I felt my entire throat slowly go numb. All sensation vanished from my tongue down my throat; I couldn’t feel a thing, let alone swallow. I remember spending the next several hours in a state of high anxiety, waiting for the medication to wear off and hoping I wouldn’t accidentally choke on my own saliva.

The lesson was immediate and serious: Because ALS symptoms vary and the disease is rare, I can’t assume others understand my needs — even medical professionals. I vowed right then to take more responsibility for my own safety.

Giving specific instructions

The next opportunity to test my advocacy skills arrived a few months later when a filling fell out of a tooth. I found myself begrudgingly sitting in the dentist’s chair, heart pounding. I nervously stated my needs upfront: “The chair: not too far back, please, as that affects my breathing. The spray: very little water at a time, please, as I have trouble swallowing.”

The dentist and his assistant listened intently. He adjusted the chair to keep me upright and scooted his own chair forward to better reach me. Then he tucked a small pillow under my neck and even slipped a sporty pair of sunglasses over my eyes to dull the glare. Seconds later, a soft rubber gizmo was placed in my mouth that felt like a snorkeling mouthpiece. It simultaneously held my mouth open, kept my tongue out of the way, and suctioned away every drop of wayward spray. Amazingly, I was breathing with ease — and actually relaxing.

The process was quick, painless, and entirely anxiety-free.

In the ALS community, asking for help or giving specific instructions can feel intimidating. Many of us hesitate, but that hesitation leads to misunderstandings and, occasionally, physical risk. If you’re struggling to find your voice, I wrote a column about a simple method I use called “build a sandwich.”

Taking care of our well-being is a priority for everyone in the ALS community. Be a strong advocate for yourself, and let’s 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 about ALS.