[BobbyB]

Despite a threatened future life can still be very good
Tony Proudfoot, Special to CanWest News Service

Published: Wednesday, December 26, 2007
MONTREAL -- On May 7, 2007, my life changed forever.

That was the day Dr. Angela Genge of the Montreal Neurological Institute informed my wife Vicki and I that I had Amyotrophic Lateral Sclerosis, or Lou Gehrig's disease.

It is a motor neuron disease, progressive, and ultimately fatal, whereby all the muscles in your body slowly waste away until you eventually die of respiratory failure. There is no known cause, no effective treatment, and currently very little hope for a cure in the near future.


I cannot convey the feelings of shock and helplessness Vicki and I had that day. As we sat there, staring at each other, the cold reality of this devastating diagnosis enveloped us, and we knew our future had just been permanently changed. We tried to portray a couple in control, but it was impossible; the astonishment and fear of this situation were flooding our thoughts. It would take us a while to realize this type of situation would require a whole new way of looking at things.

I had been reading up on the disease over the previous month, while undergoing tests to determine what was causing my slurred speech. I had started to notice a change in my voice while I was lecturing at Concordia University in late February.

There is no definitive test for ALS, therefore you are subjected to a battery of procedures, trials and examinations, hoping to find a benign cause of this apparent neurological problem.

Many other potential neurological conditions were ruled out by the end of April. As my symptoms and impairments progressively moved to muscle fasciculations (twitching), excessive yawning, uncontrolled emotional swings and more slurred speech, there was no other conclusion except ALS to explain my physical changes.

The official diagnosis is Bulbar Onset ALS, meaning the first muscles to be affected are the ones where the motor neurons exiting the brain stem control speaking, swallowing and breathing.

It often seems tragedy happens in an almost calculating, targeted way. The fine watchmaker's eyes go on him. The gifted artist or musician gets severe arthritis. The loving old man begins the downward Alzheimer's spiral and starts losing the capacity to love and mentor a myriad of kids and grandchildren. That irony is also not lost on me.

I have spent my entire life as an athlete and played nine seasons as a defensive back with the Alouettes in the 1970s. I have always been active and promoted a healthy, dynamic lifestyle only to contract a muscle-wasting disease, a disease you cannot treat or alter. To emphasize the paradox, I now make my living as a broadcaster and teacher, and the first thing that is going is my ability to speak. Absurd, cruel, nasty, even evil! So what now, you ask?

My fate has been decided, but not the rest of the life I have to live. I choose to smile, laugh, connect with friends, and be as positive as I can be. The often used, seldom practised idiom "Live life to the fullest" has never meant more to me than right now and for every single day I have left.


What I have found out is something I should have figured out a long time ago. Life is good with the right attitude. Life is really good.

This past season with the Alouettes, as part of the CJAD broadcast team with Rick Moffat and Ed Philion, was extraordinary, and not because the team played so well (duh!), but because I made a conscious effort to fully experience the moments, the day-to-day highlights of ordinary life.

I knew I wanted to remain connected to football and the CFL, so I met with Moffat privately in May and he supported my desire to continue being on the Alouettes radio broadcast team.


Unfortunately, ALS deterioration is a constant, and by the first exhibition game my voice had deteriorated to the point that I occasionally sounded a bit like a drunk. Rob Braide, the station manager, began receiving complaints. I had anticipated this event, recognizing that my voice wasn't up to broadcast standards and therefore decided to go public with my affliction in an attempt to clarify the situation, protect CJAD's reputation and sensitize the listeners and public in general.

I took advantage of an Alouettes pre-game press conference to announce to the national football media that I had been diagnosed with ALS, and that opened the floodgates. For the next six months, and counting, I have become a public face for this crippling disease.

I began to appreciate and relish this opportunity to be a spokesperson. I now realize that I can make a difference, advocating and organizing support for this devastating, but relatively obscure, condition. Only two in 100,000 people are afflicted with this disease. If you are not personally affected by ALS it's unlikely you would be aware of it and, consequently, unlikely to donate to much-needed research funds. It becomes a vicious circle, however, when there's not enough awareness, there's not enough funding.

My broadcast and media contacts throughout Canada, along with my 12-year CFL playing career, is allowing me to generate considerable exposure through radio, newspapers and television.

Since June, I have conducted 34 interviews, many of them broadcast nationally. I have been contacted by 28 ALS patients and raised nearly $40,000 for ALS research. I am continuing to heighten awareness and contribute to growing fundraising initiatives.

For example, Larry Smith, my former teammate and CEO of the Alouettes, has agreed to host/sponsor an ALS fundraising event in the new year. There are also other initiatives in the works.

I have always been one to recognize a problem and, true to my personality, decided to do something about it. I learned a lot playing football and in athletics in general. I could go on for hours about the parallels of playing a game well and being successful in life.

For example when you fail at something -- miss a tackle, flunk a test, lose a job or whatever -- you have lots of choices. If you see it as an opportunity and focus on a solution, you aren't likely to make the same mistake again.

I did what the Alouettes' Ben Cahoon routinely does when he drops a pass. He goes directly back to the huddle, no whining, no demonstration, and he makes sure the next time he makes the catch.


Once I recognized this disease for what it is -- one of the scariest lifetime experiences imaginable -- I set about to do something positive. I may not be able to raise enough awareness to generate the money to find a cure, initially, but why not try? I may not be able to re-connect with all my old friends, the ones I had planned to get together with at some later date, but why not try?

Recently, I had lunch with three of my old CFL teammates I hadn't seen for 25 years. Perhaps you're not old enough to remember Mark Kosmos, Paul Brule and Jim Foley, but if you watched the CFL throughout the 1970s you would recognize them as stars in their own rights. We recounted all sorts of stories and lies, and confirmed the old saying: "The older you get, the better you were."

Throughout the CFL season, I tried to focus positively on every situation and looked for opportunities everywhere. In order to live to the fullest, I think you need to look for these opportunities, even directly into the face of this disease. I now answer all my calls promptly, write thank you notes to every donor, smile at each person I interact with, talk positively, plan events I have put off until later and, in general, drink from a very large, half-full glass.

I plan to morph from a talker to a writer in expectation of losing my voice. I want to stay connected to the CFL in some way. Another book is in the cards, this one focusing on the role of the coach in the CFL, both historically and strategically.

Most importantly, I want to make sure my family and I live life to the fullest, truly appreciating the opportunity we have together for a couple of years. My fate is already sealed, my destiny finite. My family and close friends will live on, and as part of my quest to ease their pain, and mine, of course, we're going to have the time of our lives.

Montreal Gazette

http://www.canada.com/reginaleaderpo...0f97f032a2&p=3


© The Leader-Post (Regina) 2007