ALS fundraiser rolls again


Jason Youmans Photo

Frank Norris holds a photo of he and wife Joan on one of their last nights on the town before Amyotrophic Lateral Sclerosis (ALS) stole her mobility.
By Jason Youmans
The Chronicle

Jul 24 2007


Two years ago, the quiet routine of Chemainus residents Frank and Joan Morris was shattered when doctors diagnosed Joan with Amyotrophic Lateral Sclerosis.

Today, Joan requires round-the-clock support to cope with the neuromuscular degenerative condition. The muscles in her throat have disintegrated to the point she can no longer speak or swallow. She is fed through a stomach tube and must rely on Frank and other caretakers to transport her weakened body to the bathroom and shower.

“What she has is a death sentence,” says Frank. “Now we’ve resigned ourselves to doing what we have to do.”

And what Frank has to do is offer constant support to his wife.

“I’m very limited in my own mind now,” says Frank. “When I go shopping, I always catch myself hurrying because I want to get home.”

Joan’s rapid decline is not unusual for those diagnosed with ALS, or Lou Gehrig’s Disease, as the disease was dubbed after the famous Yankees slugger was struck with it in 1939.

What began as an occasional loss of muscle control in one of Joan’s feet several years ago soon became all-consuming, The journey from diagnosis to death for ALS patients often takes less than five years.

“The way she was declining, I figured we might not have her here in June,” says Frank.

Most frustrating for Joan, who was finishing a social sciences degree prior to her diagnosis, is that her intellect and personality have remained fully in tact, essentially trapping her in a shell.

Joan can still communicate using an electronic keyboard, but when that device malfunctioned recently, Frank says the couple were resigned to comical games of charades as he tried to interpret Joan’s motions.

“There were no grey areas in my life,” says Frank, of the time before Joan’s diagnosis. “Everything was either black or white. I either liked something or I didn’t, and I would tell you. My wife has taught me to accept grey areas. I’ve come to understand maybe.”

On July 28 and 29, the fifth annual “On-a-Roll” relay will pass through Ladysmith and Chemainus, as ALS sufferers team up to raise the profile of the disease and drum up funds for the Vancouver Island chapter of ALSBC.

The event was dreamed up by Ladysmith resident Mike Pellatt in 2003 after he was diagnosed with ALS at the age of 41. Frustrated by the lack of government support for those suffering from ALS and the lack of resources available to those who care for loved ones stricken with the disease, he decided to take his concerns straight to the front door of the B.C. legislature.

His Island journey received widespread media attention and began to raise public awareness of the condition.

Pellatt has since succumbed to the disease, as has Duncan resident Rick Wilkinson who took up the Island-challenge when Pallett was too ill to make the journey. Port Alberni’s Bob Phillips, who rolled down the Island in 2005 and 2006 is too ill to make the trip this year, so it has morphed into a relay, with wheelchair-bound ALS patients making the highway trip in stages.

“I want people to know this disease is not some stereotype. It takes everything from you. But still, I figured out that you have to soak in as much as you can in this life,” says Phillips.

Since the On-a-Roll project began in 2003, $150,000 has been raised for ALS patient support services on Vancouver Island.

Transfer Beach will be the site of the Ladysmith festivities Saturday, July 28, when David Fox and Tommy Hamilton roll in after completing the Nanaimo-Ladysmith leg of the relay.

Beginning at 5 p.m. on the waterfront there will be a silent auction, as well as a giant bake sale hosted by the Ladysmith Family Practice Clinic, who recently lost one of their staff to ALS. They hope to publish a cookbook from the bake sale recipes to raise future funds for ALSBC. Mike Pellatt’s three-year-old daughter will be on hand, manning a lemonade stand in memory of her dad.

At 9 a.m. the next day the crew will set out from Fuller Lake Arena on their way to Duncan.

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