Hey there, time traveller!
This article was published 1/10/2003 (4597 days ago), so information in it may no longer be current.
At the time, her husband and daughter had no idea how their lives would change. Today, they continue to support fund-raising efforts to fund research to find a cure for this tragic disease.
Amyotrophic lateral sclerosis (or Lou Gehrig's Disease) is a progressive neuromuscular disease that kills two to three Canadians a day. ALS results in paralysis and death, usually within five years of diagnosis. Currently, about 1,500 Canadians are living with this disease for which there is no cure.
Since the annual fund-raising Walk to D'Feet ALS was started three years ago, Colleen's husband Ken and their daughter Leah have part in the event. This year's walk was held Sept. 27 at Assiniboine Park.
Walk participants take part in teams named after a person with ALS. Their team, called Coll's Crew, has been the biggest one in the walk each year, with nearly 150 people wearing the bright yellow Coll's Crew T-shirts at the event this year.
Leah, the co-president of Oak Park High School's student council, has made it her priority to educate fellow students about ALS and to raise funds for research. So far this year, Oak Park has: Held a Homecoming Game with their football team, the Raiders; held a barbecue and a Mexican Fiesta (meal), in co-operation with the school's exchange students from Mexico; and a nickel and dime change collection drive.
"We try to connect with the students," says Leah. "We explain to them how ALS affects the muscles, while the mind still functions the way it did before."
Leah notes how dramatically her home life has changed since her mom's diagnosis. Colleen requires 24-hour care, so there is always a home-care worker helping Leah or Ken look after her.
"When she was first diagnosed, they gave her six months," says Leah. "There was a slow progression over the first year and a half. Right now, she is stable. She can't eat, because she can't swallow. She uses a word board to spell out what she wants to say with her eyes."
Leah and Colleen continue to have a mother-daughter relationship, but Leah is now also her mom's caregiver.
"I really miss going shopping with her," says Leah. "And she loved to eat. But that was one of the abilities she lost first."
Leah says her mom's disease has had a real impact on her life.
"I have definitely matured a lot," she says. "Many teens are focused on themselves. I don't take my family for granted. I am now very close to my father. I balance things in my life, and know the importance of helping others."
While Leah is quite busy, she still finds time to run and play water polo. She is also completing water safety training and plans to teach swimming.
Before her diagnosis, Colleen and Ken were teachers. Now Ken stays home to care for his wife.
"It's been difficult for everyone," says Ken. "But Colleen's at home and that's much nicer than being in the hospital."
The first sign that something was wrong was when Colleen started to slur her speech and lose her balance, says Ken. She lost the use of her left arm, then her right, then her legs. There is no test for ALS, so Colleen was diagnosed by the elimination of other potential diseases including multiple sclerosis and Parkinson's disease.
To accommodate Colleen's current needs, Ken installed a stair ramp, and a ceiling tracking system for mobility. He never leaves his wife's side for long, but says activities like cycling and skiing help him to relax, release stress and energize. He continues to take Colleen for walks outdoors, and even placed a bird feeder outside her window so she could watch the birds. He has also brought Colleen to a couple of the ALS walks.
The first ALS hospice in North America, Brummit Feasby House, on Kirby Drive in St. James, is set to open once funding for staff is arranged. Some of the money raised by Oak Park students will help to buy equipment for the house.
For further information on ALS, the walk, the hospice and how you can make a donation to support research and people living with ALS, visit www.als.ca.