I am Brian Larson
a family member in a familial ALS family,
a family member of someone we've lost to ALS,
an ALS gene carrier,
living with ALS,
someone who cared for a person we've lost to ALS
Alabama
We took several great trips in the first couple of years, but he eventually became wheelchair-bound and his world shrank to what he could access through his eye gaze computer.
At 28 years old, my son Ryan was thriving in his career, owned a house, and had a great life. He started having trouble during his Crossfit workouts with his left arm and thought he had injured himself.
A friend, a neurologist, knew pretty quickly that it was more, and Ryan was eventually diagnosed with ALS. We were told that there was no known cause, no effective treatments, and it was universally fatal – usually between 3-5 years.
We made the best of it but he lost his girlfriend, had to sell his car and house and finally he moved in with us. We took several great trips in the first couple of years, but he eventually became wheelchair-bound and his world shrank to what he could access through his eye gaze computer.
We watched him lose function week by week and he passed away under the care of hospice in September 2020 after 6 years. I long for the day that this awful disease can be treated, cured, or prevented altogether.
