I had my six-month check-up with my neurologist, Dr. Lomen-Hoerth today. This was after our Walk to Defeat ALS at Woodward Park, Fresno, last Sunday October 28th (ALSA Golden West Central Valley Chapter).
The news was good for me. I continue to have a slow progression of the disease. If last Sunday was anything to go by, I guess that could be confirmed. I was able to join in on the walk and not only that, but also displayed some crazy dance moves up at the stage together with a number of others much much younger than me! We danced to the music of “We came here for love”. It was so much fun. Maybe I made a spectacle of myself, but who cares? My philosophy in life is to smile and be happy, whatever besets us. It is what it is.
Just prior to the dancing, I was asked to go up on the stage to chat briefly about the horror of ALS and promote the need to advocate and bring public awareness of ALS. Having been fortunate enough to have traveled to Washington DC for the Advocacy Conference in May this year, I could speak first hand about the importance of attending.
Amyotrophic lateral sclerosis is a mouthful to pronounce, and ALS makes it easier for us to say. But how many really know about it? Other countries may refer to it as motor neuron disease, MND.
I’m reminded of the fact that the hardest thing to lose, is everything; walking, talking, swallowing and breathing. Eventually, it catches up with all of us who are diagnosed with the disease. I’m told that someone either gets diagnosed or dies from the disease every 90 minutes.
My aim is to bring as much attention to the subject as possible, by posting whatever I can on Facebook, and to gain as much financial support as possible to help fund research into a cure one day.
It’s been a really active 2018 for me in that respect.
1. I’m an active member of our local ALS support group in Turlock. We have a meeting once a month to encourage each other and share experiences and information.
2. I attended the ALSA Advocacy Conference in Washington DC in May. I got to be interviewed and got the chance to advocate with many representatives on the hill.
3. Sunday May 20th. I attended the Fresno Kick-off for team captains of the walk to defeat ALS at the Grizzlies Stadium in Fresno.
4. Wednesday, July 11th. I attended a Giants game at ATT Park.
5. Saturday September 1st. I attended a San Jose Giants game at San Jose.
6. Saturday September 22nd. I attended the Napa Valley Ride to defeat ALS. But I only walked and my son Barry accompanied me. I was interviewed on two occasions.
7. Saturday September 29th. I attended the Neuromuscular Conference at Stanford’s Arrillaga Alumni Center, at 326 Galvez Drive, Stanford.
8. Sunday October 28th. I was privileged to head a team of over 30 walkers for KICK BUTT KICK ALS at the Golden West Central Valley Walk at Woodward Park., Fresno. We raised well over $10,000 to reach our goal. What a great day that was, and I can’t thank everyone enough for all the support received.
9. I do my best to visit friends with ALS whenever possible. I think of Eric Eslinger in Santa Clara and Chad Wey in Ceres. Oh , and then there’s Harry Barragan who turned 61 this year and we had a great birthday celebration on that day!
So yes, quite an eventful year! And the fight against ALS continues. My heart goes out to all those suffering from this horrific disease. Please, whoever reads this blog, please become an active advocate and supporter of the ALS Associations all over the world. My personal involvement is with the Golden West Chapter, as I live in Turlock, CA.