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April 29, 2016 at 08:07 AM
Life happens — both good and bad. You will never know when, where, what, how or why, but life happens when you least expect it.
Life happened to me and my family, but we did the right things. We had the planning in place when we needed it the most.
In December of 2014, I received a phone call asking me to help coach a youth hockey clinic. What a great way to get out, stretch my legs and do something for which I have always had a passion!
So I strapped on my skates and stepped on the ice. I will never forget the moment that followed.
During my first step, I fell flat on my face. I can still hear the stick slapping against the ice. I remember the pain in my elbow as it caught my fall, and my sheer embarrassment in front of the other coaches, players and families.
Like any hockey player, I got up, brushed myself off and went to sharpen my skates. However when I stepped onto the ice again, I could not skate.
I’d played hockey through college and beyond so I instantly knew something was seriously wrong. Life happened to me in that moment, just like that.
The incident led to months of meetings with doctors and surgeons, all trying to figure out the source of the problem. Meanwhile, my left leg was growing progressively weaker. And during that time, I was still trying to keep a business going, which proved challenging.
It was April 2015 when the doctors narrowed my condition to one of two neurological diseases, Multifocal Motor Neuropathy (MMN) or sadly, Amyotrophic Lateral Sclerosis (ALS), or Lou Gehrig’s disease. In order to rule out MMN, I underwent 12 weeks of IVIG treatments, which required hospitalization. At home, I struggled with severe side effects. Meanwhile, my wife, who had only recently gone back to work, was taking care of our three children: a 6-year-old son, a 3-year-old daughter, and our third child, our miracle girl who was born four months prematurely.
I continued to work between treatments, which became increasingly difficult.
After these three months, we knew that the treatments were not working and that my condition and weakness were progressing.
I was formally diagnosed with ALS in July 2015.
ALS is a progressive disease that affects the motor neurons of the brain and spinal cord. Eventually, messages from the brain and spinal cord stop being received, which lead to muscle weakness and wasting. It’s like living in a failing body. ALS can leave patients unable to walk or talk, and eventually, unable to eat, swallow or breathe.
I am currently enrolled in the University of Michigan’s ALS Clinic, and am evaluated quarterly by a multi-disciplinary team of specialists. I am continually encouraged by their knowledge, passion and groundbreaking research.
My children are young and don’t fully understand the consequences of my disease. At home, they do notice when I have a hard time getting around. I am mostly in a wheelchair now, but I still find ways to get outside and play football, baseball and hockey, give golf lessons, hunt and fish, and even play dress-up and princesses.
