Sue’s response came naturally: “I said of course!” she exclaimed.
“We were really nervous to ask,” admitted team captain, Kim Nicholas. “The Sutherlands don’t really talk about it and when they do, it’s very matter of fact. They don’t go into the details of how the disease has affected them personally.”
Amyotrophic Lateral Sclerosis, ALS, is also known as Lou Gehrig’s disease; named after the famous American baseball player who succumbed to the disease in 1941. It is a progressive and, ultimately, fatal neuromuscular disease, with no known cause, cure or proven drug therapy. The devastating disease slowly robs people of the ability to walk, talk and, finally, to breathe. With Drew diagnosed eight years ago, the family has learned to live with the realities of ALS. “I guess we have a sort of dark sense of humour about it,” Sue said. “We’ve already gone through the reactions that come with the initial diagnosis. We’ve gone through the panic, the stress and the fear.”
With the full support of the Sutherland family, Nicholas and her colleagues began forming the Walk for ALS team. “I literally walked down the halls of the department of surgery and asked people to join us,” said Nicholas. “People are so supportive of the cause and there’s a real atmosphere of excitement. It has seemed to bring people together within our department, which is an added benefit.”
Drew Sutherland is a current faculty member and alumnus of the U of A Faculty of medicine & Dentistry, where he earned his MD, and the Department of Surgery, where he completed his general surgery residency. In talking with the Sutherlands, the team learned that a group of nurses at the University of Alberta Hospital had participated in the walk a year prior in support of Drew. The groups decided to join forces for the 2013 Walk for ALS and Drew’s Crew was formed. With close to 40 members, Drew’s Crew is the biggest team participating in the walk and consists of department of surgery physicians and administrators alongside Alberta Health Services nurses, dieticians and physiotherapists.
The team’s original fundraising goal was $5,000, but they quickly surpassed it and upped the goal to $10,000. When they passed that, they raised it once again to $15,000 and then $20,000. “The fundraising really took off,” said Nicholas. “We were surprised by the first big donation and it just went on from there.”
“We’re overwhelmed by the support,” Sue said. “It’s crazy and delightful and just wonderful, because it spreads the word about ALS, which isn’t always a disease at the forefront and is severely underfunded.”
The cost of living with ALS is a hefty one. The drug patients take twice a day runs at $10 per pill and is not covered under Alberta health care. Equipment such as a BiPAP machine, which provides puffs of air to give breathing muscles a break, can cost between $3,000 and $5,000. And daily living requirements, such as wheelchairs, special medical beds and chairs and renovations to the home to include ramps, stair lifts and other adjustments, quickly add up.
Since ALS is a patient-specific disease, its path can be difficult to predict and the needs can come at different times. For some the disease can begin in the lungs and for others is can begin with muscle deterioration. “It’s not a black and white, ABC disease,” explained Sue. “It’s more an A, D, E, F.”
The money raised through the Walk for ALS goes to the ALS Society, which supports those living with the disease. “We’re lucky,” explained Sue. “We have the means to live with the disease but many don’t. This provides critical support to the many who can’t afford the basic equipment that is required.”
For Drew Sutherland, a positive outlook and the love and support of his wife and four children keep him active in the department of surgery. He works in the Acute Care Emergency Services (ACES) ward, treating patients who come in from the ER pre- and post-surgery. He is also the assistant program director for the general surgery residency program and conducts weekly resident teaching sessions. He has been promoted to associate clinical professor (effective July 1) and recently completed the Canadian Association of General Surgeons (CAGS) exam mandatory for general surgery residents, finishing fourth overall in Canada, and first in Canada among physicians who participated voluntarily to help set the standard. “ALS takes the body, but not the mind,” Sue said. “And Drew’s mind is sharp as a tack!”
To sponsor Drew’s Crew in the Walk for ALS, June 8 at Hawrelak Park, visit the website http://my.e2rm.com/TeamPage.aspx?EventID=116542&LangPref=en-CA&TeamID=368752 and click on the ‘sponsor this team’ button.