By Michael Soles, Special to THE GAZETTE February 3, 2013
I remember my first EMG appointment in early March 2005. I remember the look of concern on my nurse’s face when she told me she needed to repeat the examination because my original results were “ABNORMAL.” I remember looking at the header of my patient file “MALE, MARRIED, AGE 38, FATHER OF 3.” I remember saying to my wife when the nurse left the room that “THIS CAN’T BE GOOD.” I remember what followed was a barrage of more medical tests, which, in the end, gave no firm diagnosis but confirmed that I had some motor neurone disease, of which “ALS was the most common” of the very rare disease options. That was eight years ago. I now realize that I am truly a very lucky person.
Hope. Hope and maybe greater awareness of the nature of the disease. That was the answer I gave when a friend asked what I would like people to feel when they read this article. However, as I write it, I realize that the hopefulness is hard to evoke when you are talking about ALS (amyotrophic lateral sclerosis). What most of us know about ALS is that it is a progressive neuromuscular disease in which nerve cells die and gradually leave voluntary muscles paralyzed. People who have ALS usually die within a few years of their diagnosis. It is hard to be hopeful in the face of this sobering reality. Yet I am hopeful and I will try to explain why.
I think what I have come to learn is that hope can be relative. For example, even though I have this disease, I have a form that progresses more slowly. So I am likely among the 10 per cent of people with ALS who live more than 10 years after their diagnosis. These words resonated because they encouraged me to keep focusing on the present, on the journey of my life rather than the destination (to paraphrase a Volkswagen commercial I always liked). I believe that focusing on the positive, on the things I have control over, and not dwelling on things I cannot change more than anything else is what has allowed me to be successful as an athlete and in the business I have developed since I retired from the Canadian Football League in 1999.
I am truly hopeful because I am now being followed by Dr. Angela Genge and her team from the ALS clinic at the Neurological Institute of Montreal. Dr. Genge is one of the world’s leading neurologists dedicated to the research and treatment of neurological diseases, like ALS. I am fortunate to be participating in a clinical trial of a new drug that is also being tested in Europe and the United States that showed good promise in preliminary testing. Dr. Genge has said that this is the most promising period in the battle against ALS in the last 15 years.
I am also hopeful because I get to interact with my three children and wife every day. I get to do all the normal things that fathers do with their kids. I coach my kids in soccer and football, and I take them skiing every weekend in the winter to Tremblant. We go on vacations and travel because that is what we have always done as a family.
This is not to say that these things haven’t got harder as my disease has progressed, because they have. I can no longer hide the fact that I am affected. My limitations are becoming more obvious to the naked eye of the public. It is just that, for me, it is better to focus on the things I can do and can look forward to than on what may be lost.
As I read what I have written so far, I wonder if I seem like someone in denial. I don’t want this to be the case because I don’t see myself that way. What I have come to see is that, while hope is crucial for me in going forward, perspective and preparation are equally important for those who care about me. My children, in particular, needed to know what a diagnosis of ALS represented so that they could understand it, have time to process it, ask me questions and make the most of what we have rather than what we will not.
The timing of this article is not for notoriety but because I realize that the effects of my disease are now more obvious to people and I wanted to avoid any more speculation and rumours.
In the last little while, I have come to realize that my friends, my colleagues, my former coaches, my teammates, and the football fans who supported me during my career may need to know also.
In knowing that I have ALS, I hope that they will also be assured that the best way to support me is to treat me as they always have and join me in focusing on the present.
Thank you to The Gazette and sports editor Stu Cowan and to all of you reading this for providing me with this opportunity.
Michael Soles was an all-star running back at McGill University, leading the Redmen to the 1987 Vanier Cup championship, before enjoying an 11-year career in the CFL, winning a Grey Cup with the Edmonton Eskimos in 1993. He played the final four seasons of his career with the Alouettes. The 46-year-old now works in finance and lives on the West Island with his family: wife Catherine, sons Anthony and Matthew, and daughter Justine.