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As published in the Gananoque Reporter, July 14, 2004
By Rosanne Van Vierzen
Reporter Staff
Ann Miller said she feels blessed by her friends and family. She shares this sentiment while sitting in her wheelchair last week, laughing with friend Giselle MacNeil. While laughing with the people she loves is something most people take for granted, she doesn’t, as she is in the advance stages of Amyotrophic Lateral Sclerosis (ALS).
ALS is a rapidly progressive fatal neuromuscular disease. A degenerative disease, it leads to progressive paralysis of the body¹s voluntary muscles, especially in limbs and the respiratory system. Commonly called Lou Gehrig¹s disease after a New York Yankees baseball player who died of it in 1941, more than 1,500 Canadians currently live with ALS. Ms. Miller is one of that group.
She was diagnosed with the disease is August of 2001 when she was 41-years-old. “I was working as a neural science nurse and I knew myself that I had it,” she said last week.
ALS causes motor neurons to deteriorate. Using the analogy of the lights in the room, “If you don’t flick the switch, the lights don’t work. I can still feel touch because my sensory neurons are in tact, but I can’t move anymore.”
She said it started in her hands, and her right arm was affected first. Though her speech muscles are slowing now, she said eventually her swallowing, speech and breathing muscles will stop working altogether.
It was when Ms. MacNeil heard she had been diagnosed with ALS that she knew she had to do something.
The pair have been friends since public schools and Ms. MacNeil said they share great memories of attending high school in Gananoque. “You get out of high school and think you have all this time to visit your friends, but when Ann got sick, I realized God is not giving us that time to wait,” Ms. MacNeil said.
Ms. MacNeil took on the role of organizing a team to support Ms. Miller in the Walk to d’feet ALS held in Kingston and across Canada each year. The walk raises money locally with the ALS Society of Ontario with 60 per cent of funds raised going to help support local services for people with ALS, their friends and families and 40 per cent going directly to research.
Last year, Ms. MacNeil organized an impromptu team for the walk including high school friends and members of the community. With more than 80 people either walking or pledging for Ms. Miller, the “Friends of Ann Miller” raised $12,684 for the ALS Society. This year, they hope to out-do that number.
Ms. Miller said the ALS Society has been incredibly helpful to herself and her family. “When I first realized I had it, one of my first thoughts was that I can¹t afford to have ALS,” she said. “Everything from medication to medical devices is so expensive and I’m unable to work. I don’t know what we all would have done without the ALS Society, they have given me equipment and helped us all out.”
Ms. Miller also said she feels blessed by her friends and family coming out to be with her and support the cause in the walk and every day.
“It’s a lot of work looking after someone who is fatally dependent, and yet people are constantly offering their love and support; I’m humbled by it,” she said.
MGM
© ALS Independence 2003-10