Finding my place as someone with slow ALS progression
Fitting in when my symptoms are advancing at a much slower pace than most
I’ve been living with ALS for the past 15 years, and although it’s filled my days with life lessons and moments of gratitude, there have also been many twists of irony. One of the biggest ironies? I sometimes feel out of place in a community that’s so warm and welcoming. Why? Because I’m what’s called a “slow progressor.”
While ALS is known for symptoms that quickly and constantly worsen, mine have advanced at a much slower pace compared with most patients. And while I’m thankful for that, it’s also presented me with the unusual challenge of finding where I truly fit.
I know I’m not alone in feeling this way. Other ALS patients often reach out to me, confiding that their progression is also slow, making them feel like impostors within the ALS community.
On the outside looking in
I first noticed this disconnect a few years after my diagnosis, when I decided to attend an ALS support group meeting. The room was filled with people facing significant challenges — many were in wheelchairs, some had breathing apparatuses, and a few came with sour attitudes. The group leader discussed topics like hospice care, feeding tubes, and living wills. Meanwhile, there I was, sitting with my rollator by my side, listening but not entirely relating. The discussions didn’t align with what I envisioned for my future self, leaving me feeling like an observer in a place meant for connection.
Then the media’s representation of ALS caught my attention. Images overwhelmingly portraying patients in wheelchairs or visibly affected by the disease’s later stages prompted me to write, “What Does ALS Look Like to You?” In that piece, I explored the reasons why we don’t see ALS depicted by patients with no outward symptoms. And I wondered why the expectation is to decline rapidly?
Yet I fully understand why these images are so popular. The stark imagery of ALS progression helps convey the urgency for research funding and awareness. If the public only saw patients like me, they might not grasp the severity of ALS, potentially reducing support for discovering a cure. In another column, I wrote how I supported ALS awareness events while protecting my mindset with mental resilience.
This sense of otherness extended to questioning if my diagnosis was even correct. But deep down, I knew it was. The mystery of my slow progression could be luck, genetics, or perhaps a combination of my lifestyle choices, such as taking proper medication, getting good sleep, doing gentle exercise, and practicing mindfulness. Whatever the reason, I try to focus on what I can do to thrive.
Finding the good fit
Still, I feel there’s a need for a space where slow progressors can connect.
Maybe my “Living Well With ALS” column and the ALS News Today Forums could be the starting points for such a community. I often invite readers of my column to join me in the forums where I’m a co-moderator. It’s a place where we share our experiences, the vibe is positive, and we can celebrate what makes us unique while reminding ourselves that we do belong. We find relief knowing that we fit in — with each other. Together, we can help each other learn how 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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