Our Champions
My name is Sam, and this is my ALS journey
The insidious onset began in Summer 2018, when I noticed a general slowing of my legs and walking speed to the point where older people would zoom past me. I didn’t think too much of it until when I was running, I kept on falling and cramping, and it felt like my legs were heavy, albeit without pain. Then, I kept on tripping on my flip-flops, particularly the right side, and as an avid swimmer and surfer, I began to take notice of these building subtleties. In the waves, I realized I could not get my feet underneath my hips fast enough and kept falling, so resorted to using a larger surfboard. So, I went to my first of a dozen neurologists, that I would eventually see. Besides some subtle increases in reflexes in my legs, I was told my exam was completely normal. Then, the muscle twitches, cramping/spasms started to take hold, spreading from right to left lower and upper legs, and then plateauing and stagnantly brewing in the lower half of my body for around a year. I started seeing more neurologists, who ordered exams, with no striking abnormalities, except an issue with my peroneal motor nerve, that was thought to occur from crossing my legs (I don’t cross my legs). I started getting extremely concerned, and did some research, using both clinical signs and symptoms to date, to build my own “Dr House” mystery illness case; the search created a frequent flyer list that always started with three fearsome letters: A L S
Then my body slowly started shedding muscle and weight, systemically, with focal areas of muscle loss. By the end of 2019, I had had MRIs, lumbar tap, copious blood vials, a couple of unimpressive, non-thorough EMGs, and clinical exams, with a strong suspicion of psychiatric illness manifesting as physical symptoms. At first, I was upset, but then I started to briefly trust the doctors knew what they were doing, even though in the back of my head, I knew they were wrong. There was one caveat to this; a general neurologist’s clinical exam that returned results that had him send me to what was the first of several neuromuscular physicians, with a clinical note that revealed: R/O ALS. As the months went by, the symptoms reached my core section, and my athletic abilities were being stripped away from me, one by one, from mountain sports, to weightlifting, to swimming, until one defining moment, that I knew this was serious.
Being a swimmer and surfer my entire life, I had built an impressive baseline of lung capacity and breath-holding capabilities. I was surfing in San Diego, when a large set of waves was breaking on the outer reefs. Normally, I would turtle roll, holding my board as the white water broke above me, and get tossed about like a washing machine. This time was different, with two key identifiers: First, I lost my grip, and my board got thrown into the abyss. And second, my Lungs. I needed to get to the surface, and fast. Normally, when you are swimming or getting tossed, you are keeping calm and slowly exhaling. Well, that exhale petered out very quickly, and I inspired seawater. Luckily, I fought to the surface, and some nearby surfer helped me to the beach. Coughing the rest of day, and incredibly exhausted, it hit me that my life was going to change.
The next few months were full of frustrating doctor appointments, and a few new eye-opening symptoms, like difficulties going up stairs and ramps, choking on food, and losing balance and falling. And odd laughing and crying episodes, that seemed disconnected or exaggerated to the moment. (Completely normal for a 32-year-old athlete, right?) With still no answer, I went back to playing Dr House. I combed all my records and clinical notes. In the summer of 2021, I decided to create a matrix of my clinical signs and symptoms: hyperreflexia and spasticity of lower extremities, positive palmomental reflex, positive jaw reflex, pseudobulbar affect fasciculations, muscle atrophy in feet, lower motor neuron signs on EMG, pulmonary function decline. It was then that I realized, the culmination of events, and clinical picture only fit one disease: ALS. I knew I had it. However, I was alone in this diagnosis: doctors, friends, and family did not believe me, and I had to continue to fight for an answer. I was so convinced I had ALS, that I began to pursue a long-term disability plan, so I wouldn’t financially burden my family’s future. Denied: Reason: Concerns for motor neuron disease.
The next three years were full of more appointments and more inconclusive results were revealed from the rushed exams, at some shockingly highly revered medical establishments. I wanted to give up, until a last-ditch effort closer to home in San Diego. Finally, an incredible experience: a two-hour appointment full of careful listening, thorough examination, and open and honest conversation, revealed a differential set of diagnoses with the highest concern for motor neuron disease. A few months and several tests later, that concern was brought to reality with a full-fledged ALS diagnosis on November 20, 2024. A mixed bag of emotions ensued, crying, anger, validation, relief. And I drank a couple strong margaritas that night. On one hand, this was a horrible answer, but it finally was an answer.
Having already researched and knew a fair bit about ALS before the diagnosis, my family and I decided to focus our attention on networking with the ALS community. My father had known about Augie’s quest through work, so my mother reached out for an initial call/interview to see how we could get involved in this fight. The Augie’s Quest team have become fast friends, as we partner with them in various fundraising events to bring awareness and funnel crucial capital to clinical research and drug development that will eventually end ALS.
So, while I would not wish the last six years on anyone, it’s my journey, and it has connected me with some pretty incredible people. Uncurable is Unacceptable, and the fight continues for this brave community.
