Fatal disease paralyzes the body, spares the mind


Brian Giebelhaus photo

Tracy Holmes ALS sufferer Gaye Baluk is looking forward to hearing Dr. Andrew Eisen speak at Senior Support Services tomorrow.
By Staff Reporter

Jun 19 2007


Senior Support Services to host ALS expert


When Gaye Baluk goes to the doctor for help, she’s as prepared as she can be. She has to be – odds are, she knows more about her ALS (amyotrophic lateral sclerosis) than they will, and she needs to help them help her.

Baluk, 62, was diagnosed with the fatal disease 12 years ago, after seeking medical explanation for the onset of her unexplained limping.

“Nothing hurt. I thought, this is strange. It just didn’t work,” she said.

It took doctors numerous tests and three years to diagnose her. Once they’d pinned it down, the news wasn’t put lightly.

“They brought me into a room, dropped a box of Kleenex onto the table and said, prepare to die.”

Baluk was told she had no more than three years to live. Although she’s survived more than triple that already, she knows her fate is inevitable.

“I’ve come to terms with it. I’ve had time to come to terms with it,” she said.

Baluk has lost many things to the disease – her ability to walk, her independence and half her lung capacity among them. But she hasn’t lost the will to live, nor the desire to help others manage living with the disease.

To that end, she’s convinced the province’s leading ALS expert to speak in South Surrey. Dr. Andrew Eisen will be at Senior Support Services, 15008 26 Ave., from 1-3 p.m. tomorrow (Thursday). Eisen founded Vancouver’s ALS Centre. He is Professor Emeritus at UBC, and a graduate of England’s University of Leeds. He was head of neurology at UBC from 1995-2000, and was director of Vancouver General Hospital’s neuromuscular diseases unit for 20 years. He’s also a founder of the ALS Society of B.C., and, in 1999, received the Forbes Norris Award, for compassion and love of humanity in the study, management and support of ALS and motor neuron disease.

Baluk described Eisen as “a real sweetheart.”

“I feel very fortunate that he’s taking the time to come out and speak to our group.”

There’s much to learn about the disease made famous by American baseball great, Lou Gehrig. It progresses rapidly, attacking the motor neurons that transmit electrical impulses to the muscles. The neurons eventually disappear, causing virtual paralysis.

Somewhat cruelly, the disease leaves the senses unscathed, even in its advanced stages. That means sufferers can see, hear, smell, and feel throughout its progress.

ALS affects two in every 100,000 adults in Canada, with onset typically between the ages of 40 and 70. Average life expectancy after diagnosis is two to five years, during which time equipment costs for managing the symptoms average $137,000. Nursing and home care costs can be 10 times this amount.

Research has identified a gene in those with hereditary ALS, but are still miles from determining cause or cure.

Baluk said at least 25 people have signed up for Eisen’s talk, many of them health professionals. Members of the ALS support group she facilitates are also attending. Anyone else interested in attending may call 604-531-9400.
http://www.peacearchnews.com/portals...1009114&more=0