Each year, the Betty's Run for ALS Committee selects an Ambassador to help show the public what it is like to live with the disease. The ALS Society of Alberta is thrilled to introduce Wayne Thomas as the 2018 Betty's Run for ALS Ambassador.
"I first noticed weakness in my left foot in 2015 while running with a friend. When it persisted and worsened over the next few months, I saw a doctor who assessed it as a probable back injury. For 2016, I did all the things you would for a back issue: an MRI, acupuncture, chiropractor and physio but still it wasn’t getting better. In January 2017 with my foot becoming full-on drop-foot and it becoming difficult to walk without a leg brace, I was at a loss for answers. I went to another doctor for a second opinion and he agreed that this didn’t seem normal. He recommended I have an EMG /nerve conduction test. By May it was revealed that I had significant muscle deterioration in my lower left foot and leg. After many medical tests to rule out all other possibilities, it was determined there was a high probability I had something I had not expected – a diagnosis of slow-progressing Amyotrophic Lateral Sclerosis or ALS.
Initially, I was devastated. After the grief and shock subsided, and with the support of my wife Joanna, family and friends, I got on with facing the disease head-on. I continued to work, exercise, travel and with the help of Joanna, researched various known treatments to further slow the disease. Through an ALS forum, she discovered a drug called Radicava / Edaravone that was invented in Japan and originally targeted for stroke sufferers. With her at my side, we travelled to Japan in the fall where I spent five weeks receiving the infusions with the intent to carry on with them back home. In addition, I have signed up in Canada for other clinical trials of medications being tested to treat ALS.
I am hoping that sharing my story will help shine more light on this disease. I want everyone to know that ALS is a severely underfunded illness. The support of fundraisers such as Betty’s Run, however, have accelerated the number of promising investments being made into national ALS research. The ALS Society needs our support so that not only the patients already diagnosed are taken care of, but there continues to be additional medical advances so ultimately a cure for this horrible disease can happen in the foreseeable future. From a personal perspective, this diagnosis has been a glaring reminder for me that we all have to savour life more and live it to the fullest. I have had a great life so far, and any experience I have going forward will be counted as a blessing not a right. Supporting Betty’s Run is a great example of how we can all get involved and I am honoured to be part of it."