My History With ALS
As a youth growing up near Cape Canaveral, Florida, in the early 70s I always wanted to be an astronaut. Along that theme I always had an interest in computers. Immaturity in my adolescence ruined my scholastic career and put my professional future in jeopardy. However, in my mid-20s I was lucky enough to be in Silicon Valley during the beginning of the “Dot-Com” era. I pulled myself together and taught myself how to manage corporate computers and networks. Hard work and determination delivered a career borne of a hobby. I very literally went from slums to seashore.
I was laid off in 2001, a victim of the “dot-bomb”. While between jobs I was developing the network infrastructure for two startups, working for sweat equity nights and weekends. During the day I was providing contract Information Technology service to a loan office which was rapidly expanding and at night I was going to community college to finally get my CS degree. It was a struggle but I was extremely happy. By mid 2004 I had resumed life with my dream career, my beautiful wife, our house by the beach where we could walk to surf together for our anniversary. I was bullet proof, on top of the world and about to reach the moon. At that time I was ready to begin the next phase of marriage and become a father. But then I was visited by random misfortune from which there is no evasion or escape. Thanks to quick action on the part of my local doctors I was very quickly under the care of the UCSF ALS clinic where after exhaustive testing the only remaining diagnosis was ALS. I was hoping for cancer, even HIV, as those conditions have treatments. But I drew the short straw. Once diagnosed there was nothing the clinic could do except chart my decline and offer relief from symptoms. There is no treatment of any kind. It’s a death sentence.
Slowly everything drifted away. I had to give up the beach cottage (which, being perched on a hill, had many stairs) for a single level ranch-style well back from the ocean. Eventually I lost my ability to hold a steering wheel and was forced to relinquish my car. And in early 2008 after a hospital stay for a choking spell I officially resigned at work and turned control over to my replacement. By that time I had become active in the online ALS community and decided to devote my skills to that. I had been bringing research to my local support group but as my ability to speak and travel faded I transitioned to my blog. In mid-2008 I underwent a tracheotomy to accommodate the machine that now breathes for me, and thus the last of my independence faded away. Eventually even my most treasured achievement, my marriage, was shattered under the strain.
I am now totally paralyzed (quadriplegic) and dependent on a machine for even breath. Everything I had built, bought, saved, or enjoyed in my life was taken from me or consumed by this disease.
However, I refuse to go away. I am determined to continue to be of service regardless of my disability. To that end:
- I maintain a blog (along with its accompanying podcast) where I analyze research as a service to other Person(s) with ALS (PALS)
- I provide Information Technology advice to PALS to help them transition, including remote admin sessions on their computers
- I helped create and am part of a global “family” of PALS formed using social media
- I am an active and aggressive advocate for awareness, creating and distributing multiple PSAs and educational videos
- I encourage and participate in coverage by regular media
- I consult with nonprofit and privately-funded biotechs and with universities on projects to benefit PALS
- I am a designer of and participant in patient-driven drug trials – (Lithium, UDCA, Sodium Chlorite, Fisetin+DHA)
- I volunteer time on the ALS Untangled review committee dedicated to analyzing and rating popular alternative & off-label treatments
- I co-founded and/or actively manage two nonprofits dedicated to bringing near-term treatment to patients (was the ALS Emergency Treatment Fund, is now Wide Trial) and bringing new treatments from lab to clinical trial
- I co-founded the patient advocacy group Hope Now for ALS
After more than 150 years, ALS continues to be the best-kept medical secret. With an incidence equivalent to Multiple Sclerosis and a considerably more ghoulish prognosis, it is amazing that more attention is not paid to research. For 90% of cases there is no cause. There is no risk factor or lifestyle choice which can avoid it. It can happen to you. With every day of delay people gruesomely die and families are irrevocably shattered. The country has a house on fire and right now we only have a squirtgun with which to douse the flames. We desperately need more funding for research to understand the biology underlying ALS, more government incentive to bring discoveries through translation to human trials, and more rapid access to these prospective treatments. Time is very short for PALS. What if Professor Stephen Hawking had usual progression and was taken before he could produce his extraordinary work? How many more “Stephen Hawkings” do we lose every day?
— Eric N. Valor