I have the honour of being involved with the ALS Society of Manitoba. I was thrilled to produce a public service announcement with permission from U2 and Universal Music to use the song written by U2 and sung by lead singer and songwriter, Bono, “Walk On.” It was played throughout Canada and I was shocked and truly excited to be the recipient of the ALS Society of Canada Exceptional Public Awareness Award in Toronto in 2006. I accepted this award and was pleased to be given a chance to speak about my friend and co-worker, Ron Krahenbil. Ron developed bulbar ALS and his voice was the first thing to go. ALS is a rapidly progressive and fatal neuromuscular disorder that causes the degeneration of a select group of nerve cells in the brain and spinal cord. As the nerve cells die, people with ALS lose control of their muscles, which makes breathing, eating and even smiling almost impossible. Ninety per cent of those who get ALS will die within two to five years. Up to 10 per cent can live 10 years or more. ALS is not considered a rare disease.

Donalda Fenske, another well known and loved member of our community, was also taken from us due to this horrible disease.

Richard Brown, known to many of us as Rick, was diagnosed last August. Rick has recently moved from Churchill to Winnipeg. Rick is 53 years old and agreed to answer these questions to help bring more awareness to ALS.

Rick, have you ever known anyone with ALS before this?
I haven't known anybody with ALS but since being diagnosed I have researched many.

Had you ever heard of ALS before you were diagnosed?
Yes, but only the Lou Gehrig story.

What were your symptoms?
It just seemed like a pain in my arm, but I had fallen earlier and I thought it was that. I've had twitches since I was a kid. They've always been the same. I'm just getting them in more places now.

What sort of tests did you have to go through?
I went through nerve conduction studies, MRI's and then even more nerve conduction studies.

How did it feel when you first heard the words you have ALS?
Relieved! I thanked the doctor and he said to me, “Do you realize how serious this is?” and I said “Yes, I knew there was something happening to my body, I just needed to know”.

How many children do you have?
I have a son, who is 30 years old, two wonderful granddaughters, and two foster sons who are 25 and 6 years old. The youngest one we are in the process of adopting.

How has ALS affected your family?
It has brought us closer together.

What do you want the public to know?
I want to let them know that I'm thankful for all that they have done with all the fundraising that went on in Churchill.

Has the ALS Society of Manitoba been supportive?
I've been there twice and they were helpful both times. I know that there's a tremendous ALS support group waiting for me.

Does it help to talk about it?
Tried that but my arms still don't bend. (Chuckles.)

What are you afraid of the most?
I'm afraid of the destruction the human race is doing to our planet. I feel as if my ALS is a side effect of this.