Taking place this June throughout B.C.
I am happy to reach 59 this year. Having grown up on healthy food and an active lifestyle, I fostered the same with my own family and took longevity for granted.
High school exposure to biology and the other sciences pushed me toward medical school. In 1990 I was licensed as a family physician. Seeing a lot of value in the longitudinal doctorpatient relationship, I adopted a (now old-school) broad scope of practice that covered pregnancy, childbirth, death and everything in between. Having no healthcare needs of my own and an excellent family health history behind me, I expected to continue practicing this pattern of care well into my sixties.
That all changed before my 50th birthday. After occasional word slurs followed by muscle wasting in my right hand and muscle twitching all over my body, I visited my own family physician. The next 12 months put me through more tests and doctor visits than my entire life previously. While ALS was the most probable diagnosis,
elimination of other possibilities delayed a firm diagnosis for 18 months or so. This was bad enough, but discovering that not much had progressed in ALS treatment since my medical school training was beyond disappointing.
I recall the inner feeling of isolation living with this secret as I continued to work. Because timing is everything, even my wife was unaware for months. To avoid complicating high school for my youngest son, I waited until well after graduation to tell them both, using a mountain bike ride up Fromme to soften the blow.
Paradoxical good fortune has given me a slowly progressive disease pattern and preserved my legs, so I was able to extend my professional life by stepwise scaling back the scope of practice as my capabilities changed. I finally had to stop working about four years from symptom onset.
Although I have declined available treatment based on unimpressive cost-benefit ratio, and my slow progression excludes me from clinical trial eligibility, I have had opportunities to participate in disease research. That means
serial MRI brain scans, multiple complex cognitive quizzes and blood donation for genetic study.
The ALS Therapy Development Institute in Boston has a data
stockpiling project they call the Precision Medicine Program. They now have over five years of remotely submitted voice recording and movement tracking data from me. Their collaboration with Google has
allowed me to participate in the development of a speech clarification app, initially called Euphonia, now called Relate. This transcribes poor vocal clarity to perfect print and permits electronic enunciation. ALS has tested my natural optimism, but exposure to the enthusiastic and brilliant people involved with these projects has been inspiring.
I am now about 10 years in, a statistical outlier. My voice is weak, my speech is barely intelligible, I salivate uncontrollably, swallowing requires focused attention to avoid choking, my neck struggles to support my head, my hands are almost useless and I cannot lift them above chest level. Valentine’s Day 2020 gave me a feeding tube to bypass my mouth. Family and friends can now take turns feeding me. Nocturnal breathing support keeps me alive overnight. Despite my progressively shrinking world and increasing need for help, I face each day choosing to focus on what I still can do rather than what I cannot.
The ALS Therapy Development Institute has a motto worth quoting: ALS IS NOT AN INCURABLE DISEASE, IT IS AN UNDERFUNDED ONE
To me this conveys an attitude of commitment, excellence and hope. That is exactly what ALS needs and what the ALS Society of BC’s PROJECT HOPE is all about. This UBC professorship with dual clinical and research roles will move the ALS needle in BC.
My boys have become Canadian Alpine Ski Team athletes in the time since my diagnosis. Brodie’s Helmet for Hope campaign last fall raised both funds and awareness with ALS-themed artwork for his World Cup race helmet. Riley raised funds running the 2019 Vancouver Half Marathon. They and their teammates participated in the Ice Bucket Challenge back in 2014, before they knew what ALS was or how close it would come. Athlete parents all know that it takes a village to develop an athlete. PROJECT HOPE is also benefitting from the generosity of my village. You all know who
you are. I thank you sincerely from the core of my being.