I was diagnosed with ALS in 11/2023
This is what I am going through, this is how I’m doing, this is where I’m going.
About Grayson
I grew up in Asheville, NC enjoying the oldest mountains in the world, the Appalachians. After attending college at Appalachian State University, I went to live in Chile. Upon my return I explored the open West. I split that year between Breckenridge, CO and Yosemite National Park in CA, snowboarding and rock climbing and working in my spare time. Eventually I felt called to return home and dedicate my time to the pursuit of a graduate degree in Communication Sciences and Disorders. My goal was to help bridge the service gap that exists for dual language learners in our educational framework.
I am an educator, guide, student, son, uncle, and brother. I have enjoyed this world deeply through my body and am struggling to adjust to this new set of circumstances.
A day in the (past) life
Diagnosis
After 6 months of diagnostics, including 2 MRIs, an ultrasound, and ultimately a EMG (an extremely uncomfortable test that involves delivering voltage to your body to measure its response) I was told that what I was experiencing was early signs of amyotrophic lateral sclerosis, known as ALS or Lou Gehrig's disease. ALS is a fatal, progressive neurological condition that takes away your ability to speak, move, eat, and breathe. There is no clear cause and no known cure, though there are medications that slow its progression. After hyperventilating in the doctors office, struggling to comprehend how the wide open window of possibility called life could be so abruptly and cruelly shut, my sister and I left the clinic and went for drinks and food, but mainly drinks.
Since then, my body has slowly started to shut down. It is a daily lesson in humility, acceptance, and choosing to rise. I am blessed with a strong support system made of a loving family and a trusted community of friends both near and far. I am privileged to have world-renowned Dr. Richard Bedlack as my neurologist at attend the Duke ALS Clinic, one of the best ALS clinics in the country.
That Was Then….
I went climbing in Owens River Gorge, near Mammoth Lakes, CA. I did not get to the top of this wall. (called the great wall of China), and I had to leave a carabiner on the wall.
That Was Then….
I hiked Half Dome in Yosemite National Park. We did not get a permit, so we did it at night time when they wouldn’t be checking. One of the most beautiful sunrises that has ever occurred, I’m certain.
That Was Then….
This was Anderson lake in Olympic National Park. We did 62 miles in 5 days, 11,000 ft in elevation gain. Turns out cotton is not rotten.
Upcoming Clinic Visits
How You Can Help
Subscribe to our newsletter to get updates on my life and evolving condition. Pass the word on to others so they can subscribe too. If you feel called to help, a GoFundMe campaign will be set up in late 2025. Funds from the GoFundMe will help ease the financial burden that comes along with ALS. And at any time I welcome your thoughts, words, and time.
I am humbled and eternally grateful for any and all of your support. I wish I wasn't on this path, but I'm thankful that there are people willing to walk it with me.
With Love and Respect,
Grayson