In 2015, in my early 40’s, while running with a friend, I noticed weakness in my left foot. Over the next months and years after the weakness continued to progress and after several misdiagnoses, I was given the life-changing diagnosis in 2017 that I had Amyotrophic Lateral Sclerosis (aka ‘ALS’, Motor Neuron Disease or Lou Gehrig’s Disease).
After the initial shock, me and my wife Joanna, have been proactive in fighting this illness and remaining strong. Towards the end of 2017, we flew to Japan and spent five weeks receiving Radicava infusions and continued on with the treatment when I returned home for nearly two years. I also participated in a voluntary clinical study for Pimozide and also another for Reldesemtiv. While down in California, I also donated my blood for another clinical study so that the researchers could check for any biomarkers that may lead them to future findings for other ALS patients. Obviously, as are many ALS patients, I am interested in new research. Nurown and AMX-0035, for instance, have indicated initial interesting findings in their Phase 3 clinical studies.
With the support and prompting of several friends and colleagues, I have chosen to leave a legacy by writing a book to document my journey with ALS. I feel there is an opportunity to not only raise awareness of, and funds to fight, this horrible disease but also provide a bit of humor and hope for people to help them live their best lives as they face their own struggles in life. I knew going into this project, I would not be looking to make money, so at least 70% of the proceeds are going directly to the ALS Society of Alberta. The remaining 30% will simply cover publishing and printing costs. It is called: "PERSPECTIVES: 17 Things I Learned About Living Your Best Life While Battling a Terminal Illness" https://www.amazon.com/dp/0228845505
The ALS Society of Alberta has been fantastic to me and my wife. For every dollar that they raise, 60% goes directly to ALS patients and their families for much-needed equipment and the remaining 40% goes to the National ALS Society for research that is used to help find effective therapies and hopefully a cure that will benefit all ALS Fighters around the world. They have supported us with equipment as we needed it and in addition, all the people that work there have been an amazing emotional support to us as well.
In summary, 2020 was a difficult year for the world. As an ALS patient, we often feel isolated already due to our disability. When there is a global pandemic, many of us were trapped inside for over a year away from our friends and loved ones and many still are. After I was diagnosed my wife and I made the decision to purchase a second home in Palm Desert, California. We made that decision so that we could escape the snow, ice and cold that is a big part of Calgary's winters and with Covid-19 we were even more grateful. Last year in the fall, we flew down for the second year in a row and enjoyed warmer temperatures where I could get out and experience vitamin D. Our plan, assuming my health continues to hold up, would be for us to head down again later in this year and spend another few months in warmth (and sea level which helps my weakened breathing). This not only gives us something to look forward to, but also provides us a good mental health experience as we continue to make memories and live a life of gratitude.