This October, I'll be lacing up my running shoes again for a cause. In honor of my dad who was diagnosed with ALS last year, I'm raising $2,500 for Team Gleason as part of the Newport Half Marathon. Please donate and help me make life better for others living with ALS!
My story with ALS:
One year ago I got the call that I was quietly dreading for months. The slur in my dad's speech that had gotten progressively worse over time was not just a strange phenomenon but was most likely ALS. A few weeks later the diagnosis was confirmed. My dad has bulbar-onset ALS, which is a generally faster-progressing version of "Lou Gehrig's Disease". Despite the well-known name and the immensely popular "Ice Bucket Challenge" fundraising effort in 2014, I knew little about the disease other than it has no cure.
According to the ALS Institute, Amyotrophic Lateral Sclerosis (ALS) is a progressive neurodegenerative disease that attacks motor neurons in the brain and spinal cord, leading to the wasting away of muscle and loss of movement. That's a long and complicated way of saying the patient continues to lose control of all their muscles. It sometimes slows, but it never stops. Because of WFH I have been able to travel to see my dad for a couple weeks at a time - never staying away for longer than ~3 months. Through these trips I've developed a motto for ALS "it will always be worse than the last visit, and it will always be worse than I expect."
Over the past year my dad has gone from having a slight slur in his speech, to communicating via a voice app on his phone, to an eye gaze tablet. Along the way he has lost the ability to eat food or drink and has moved from an exercise routine I couldn't keep up with to a walker to a power wheelchair. It has gotten harder and harder to communicate from afar (Zoom with chat has been an essential tool), but over the past year I've been able to spend more quality time with my dad than in any period of my life, for which I am incredibly grateful.
I have 3 main takeaways from the experience of this past year:
1. ALS sucks. It is brutal for the patient and their caregivers. The grieving process starts on Day One.
2. Technology is absolutely essential to providing ALS patients with independence and communication for as long as possible.
3. Time is precious and meaningful memories are one of the most important thing you can give an ALS patient and their families. My camping trip with my dad and my brother is one of my most cherished trips.
On the anniversary of starting this awful, painful journey, I decided to do some good. I will be jumping back into long distance running (something I always shared with my dad) with the Newport Half Marathon this October and the goal of raising $2,500 over the coming months. At my dad's request, I'll be raising money for Team Gleason, started by the former New Orleans' Saints player who, since his own ALS diagnosis, has created an organization focused on empowering people with ALS to live purposeful lives through major investments in assistive technology and equipment and funding accessable adventures for ALS patients and their families (like our family camping trip).
Please contribute to my goal and help others with ALS live a full life despite this disease!