When Derek Milloy first joined the world-renowned Simon Fraser University pipe band as a bagpiper at 18, he was good, but not great. At least, that's what he remembers from one of his first performances with the group in 1988. A more experienced piper, Darleen, was watching the show and couldn't help smiling at him as he fumbled a few notes. He noticed her, too, and it wasn't long before the two were a couple.
Derek recalls her talent and admired both her musical ability - she was a solo champion - and gift for connecting with so many people in the piping community.
"She knew everybody, it seemed. Judges or other players from overseas, they would all come and talk to her," Derek said. "She was a very social person and knew everybody in the piping scene quite well."
The two got married in 1993, and kept up their mutual love for Scottish music throughout their lives together.
Darleen passed away last May, 20 years after she was diagnosed with multiple sclerosis (MS), but her passion for the music never waned. MS is an autoimmune disease affecting the central nervous system, with symptoms varying from numbness and tingling to blurred vision and difficulty speaking or swallowing.
Darleen always loved to hear Derek play. When the SFU pipe band won the World Championships in 1995, she was "absolutely over the moon," he said.
Despite the challenges of living with MS, Darleen always maintained an optimistic attitude, Derek said.
"There were times of frustration when she was not able to play bagpipes the way she had before her fingers weren't working the way she wanted them to," he said. "I know that was frustrating for her, but she just had a great attitude all the way through. She wouldn't talk about what she couldn't do or things that were problems; she'd shrug her shoulders and put a smile on her face and say, 'It could be worse.' She was happy and smiling every single every day."
Derek looked after Darleen and helped her to keep up with her passion for Scottish music by staying involved with the piping community as much as possible.
This month Derek is being recognized on the national level by the Canadian MS Society with the Opal Award for Caregiver. He was presented with the award last month by the national MS Society. The local division will make another presentation in recognition of his dedication to Darleen at an SFU pipe band show at the Vogue Theatre in Vancouver on April 15.
"It's humbling," Derek said in response to the award. "To me, I couldn't imagine my life with Darleen going any other way. I just did what seemed automatic. ... There are people all over who are caring for relatives who have profound challenges, and it's humbling to me to be singled out."
Canada has one of the highest rates of MS in the world, and every day, three new people are diagnosed with the disease, according to the national MS Society. Currently there are between 55,000 and 75,000 people with MS in Canada.
Researchers have developed several treatments to manage symptoms and are working on finding a cure.
On April 29, people in 25 communities across B.C. and the Yukon will participate in the annual MS Walk to raise funds for research and support. The Vancouver Scotiabank MS Walk will start at 8 a.m. at Ceperley Meadow in Stanley Park. Walkers can choose either a 3 km or 5 km route, both of which are accessible to scooters and wheelchairs.
"One of the reasons [this event] is important is because the MS Society raises almost all of our money," said MS Society spokesperson Suzanne Jay. "Over 80 per cent of the money we put into supporting research or funding programs and services we raise during pledge-based events. The government funding counts for about two per cent of our budget."
The MS Society also helps support people affected by MS by providing walkers, wheelchairs, air conditioners, and other equipment, as well as programs like the Volunteer Legal Advocacy Program, which offers legal advice and help with advocacy and accessing support services. This year's fundraising goal for the MS Walk is $1.3 million.
Derek says this annual event, which is the biggest fundraising initiative the society puts on, has a greatly positive impact on those living with the disease.
In Darleen's case, he said he is very grateful to have had access to equipment needed for Darleen's care, such as a wheelchair, lift and feeding pump, as well as a regular newsletter from the Society listing updates on the latest medical research.
"I see advances coming and see they seem to be slowly untying the knot that is MS," said Derek. "It's just encouraging to know that other people who are in situations like Darleen's would have even better chances, that they might have their symptoms delayed."
For more information about the MS Walk or to register, visit www.mswalks.ca.
