Today I Walk For ALS Because My Mom Couldn’t
I often think about the last Christmas I had with my mother, Kathryn, before ALS took her. I remember sitting next to her by the Christmas tree one evening after the celebrations. She was reading the book I gave her, and I was playing the computer game she gave me. When she would say “I’m ready,” I’d stop my game to turn the page for her. She wasn’t able to move her arms, so this was the only way she could read her book.
The doctors diagnosed my mother with ALS, sometimes known as Lou Gehrig’s Disease, in August of 2002. At first she started feeling slight weakness and increased exhaustion when walking through airports on business trips, until she couldn’t even step up to get into our family’s SUV. The disease progressed quickly with her, and soon she was in a motorized wheelchair with 24-hour care.
My mother was an active and highly accomplished woman, and now she couldn’t even turn the pages of her book by herself. It broke my heart to see how ALS imprisoned her in her own body.
Kathryn passed away three months later, in March of 2003, and I committed to fighting so other families wouldn’t have to go through ALS like we did.
Every 90 minutes someone is diagnosed with ALS. It’s a neuromuscular disease which attacks voluntary muscle control over time. People with ALS start to lose motor functions like walking, waving, turning their heads, speaking, eating, and eventually breathing. For reasons unknown, military veterans are twice as likely to be diagnosed with the disease.
There’s a lot we don’t know about ALS. We don’t know what causes the disease and leads to neurological breakdowns in our bodies. We don’t know if risk for ALS travels through inheritance or just happens randomly. My mother had an aunt with the disease, but we’re not sure whether that played into her diagnosis or not.
The good news, though, is that we’re learning more and more every day.
In 2019 I joined the board of directors of the ALS Association Golden West Chapter so I could contribute to our important work of caring for people living with ALS, and supporting research to find a cure. I’ve never met a more passionate team of staff and volunteers who stop at nothing to support the best research and care and to let as many people know about this terrible disease. I have been a part of many non-profit organizations before, and I’ve never felt I was making such a difference as I am now.
Caring for my mom was the biggest challenge as the disease progressed, and I’m grateful we had good resources. So many families and individuals living with this disease have no idea how to access the resources and care they need when ALS strikes. I’ve met many people living with ALS and learned how the care we provide them changes a hopeless situation surrounded by death into a peaceful time surrounded by a loving community. I’m so proud that we offer this care free of charge.
I had the opportunity to visit USC’s Stem Cell Lab to witness first-hand the astonishing research the ALS Association Golden West Chapter is supporting there. I used to think a cure for ALS was just a dream, but we are much closer than I ever thought. Researchers were showing us the absolute cutting-edge tools and techniques, including micro-time-lapse photography and the ability to create test “brains” to use with treatment tests. This research may have massive positive impacts on other neuro-degenerative diseases as well, like Parkinson’s and Alzheimer’s.
In November 2019 I walked with my men’s community service organization “Full Monty” in the annual ALS Walk in Los Angeles. This was the first time some of the men had heard about ALS and the first time they’d been involved with the ALS Association. Many shared with me later what an impactful opportunity it was for them to get involved and they appreciated the opportunity to help in a meaningful way by supporting the ALS Association Golden West Chapter. Definitely check out Fox 11 news (and our event emcee) Elex Michaelson’s excellent event wrap-up.
We had so much fun that we’re going to do it again! We’ll be participating in the Virtual LA ALS Walk on Sunday, November 1 and I hope you will join us. Together our goal is to raise money and awareness so that we can keep caring for our brothers and sisters with ALS and finding a cure. Click here to join the team or just make a donation!
Your donation will truly make a difference. The ALS Association Golden West Chapter fights ALS at all levels and has a four-star rating on Charity Navigator, so you know your money is efficiently spent. We fund research, advocate at all levels of government for important legislation, and provide support to people who are affected by the disease and help to their families.
Make your secure donation via our team’s web page: http://web.alsa.org/goto/FullMonty, click the button below, or make a check payable to “ALS Association GWC,” put “Full Monty” on the memo line and mail to:
ALS Association Golden West Chapter c/o LA Walk
P.O. Box 565
Agoura Hills, CA 91376
I hope I’ll get to see you at the virtual walk! Thank you so much for your support for our important work. Together we will improve the lives of those living with ALS, and find a cure for this terrible disease. Together we have hope!