By Trevor Suffield
Dec. 18, 2008
After spending 17 years working as a licensed practical nurse, Eleanor Robinson decided it was time to retire.
Robinson was married to a farmer, had four beautiful children together and had earned time off after working as an aide at the care home in Minnedosa where she grew up and still lived.
Eighteen months ago Robinson’s world was tossed upside down when she was diagnosed with Amyotrophic Lateral Sclerosis, or ALS.
Last month Robinson, 70, moved into Brummitt-Feasby House in the Sturgeon Creek area. Brummitt-Feasby provides care and support to individuals with ALS. It was donated by the stepdaughters of Dorothy Brummitt-Feasby, who died of ALS in 2000. It officially opened in 2005 and includes four bedrooms overlooking Sturgeon Creek and a four-seasons sunroom.
ALS, or Lou Gehrig’s disease as it’s also commonly known as, is a rapidly progressive, fatal neuromuscular disease which causes muscle paralysis.
More than 3,000 Canadians currently live with ALS, according to the ALS Society of Canada. An average of two or three Canadians die every day as a result of ALS. There is no known cause or cure for the disease.
Robinson, who has five grandchildren, didn’t know a lot about the disease but learned quickly. She now has to eat through a feeding tube. She can no longer speak and must communicate by writing on a notepad.
Robinson acknowledged that her condition can sometimes be frustrating. Because she can’t speak, people often think she’s deaf.
Patrick McPhillips, LPN and team leader at Brummitt-Feasby, says ALS sufferers often feel like they are prisoners in their own body.
“One of the things they want people to know is that it doesn’t affect their minds, only their body and muscles,” McPhillips said.
Diana Rasmussen has been involved with the ALS society for over 25 years and is currently the executive director of the organization. She was drawn to the organization because the deadly disease hit close to home.
“It was seeing people with this devastating disease and having people that I knew, a close friend, that died of ALS that made me want to become more and more involved,” she said.
This December, the ALS Society of Manitoba is promoting its Lite Up A Life campaign. The aim of the campaign is to raise awareness and funds for those living at Brummitt-Feasby House.
The society is selling light bulbs that will be placed on 12 Christmas trees located outside the house. The bulbs sell for $5 for three or $10 for seven.
Rasmussen says the campaign is about more than just raising funds.
“It’s about making sure people know what this devastating disease does to people,” said Rasmussen, adding that she hopes the campaign helps make more people aware of Brummitt-Feasby House and the services it provides.
Brummitt-Feasby House has an annual budget of approximately $400,000 and is the only one of its kind in North American, according to McPhillips.
Robinson, who played baseball when she was growing up, says she knows there will be tough times ahead. But she is determined to remain positive and says she’ll “never give up hope for a cure.”
For more information on the Lite Up A Life Campaign, or to donate call 831-1510 or visit www.alsmb.ca.