When you’re accustomed to being active and full of energy, slowly losing the ability to do even the most basic things can be frustrating.
For Annie Graham that slow, gradual process began months before she was diagnosed in April with amyotrophic lateral sclerosis, more commonly known as ALS or Lou Gehrig’s Disease.
“It’s a s***kicker,” the 72-year-old View Royal resident says from her townhome living room overlooking Thetis Cove. She booked the interview for the morning, as by noon, “I’m wiped out.”
That ongoing fatigue is the worst part of the disease, she says, especially when she’s used to being active, going for six-kilometre walks and lending her volunteer energy to various community groups.
These days, doctors have told her, she needs to “conserve her energy for the things that matter.”
Annie’s story and others like hers are among those that will be told this Sunday as the ALS Society of B.C. and Yukon hosts its annual Walk for ALS, starting from the University of Victoria parking lot 10 at 1 p.m.
While it has a relatively high profile, ALS is not a common disease, currently affecting 35 patients on Vancouver Island. Doctors still don’t know exactly what causes ALS, and diagnose it by the process of elimination of other causes of the muscle and nerve-related symptoms. Like any other disease which has no cure and leaves individuals with the promise of a shortened lifespan, it becomes a daily struggle trying to maintain some semblance of normalcy.
“ALS is characterized by a series of losses,” says Annie’s husband, Garth, adding that the person continues doing the activities they are used to until they can’t anymore.
In Annie’s case, cooking is one of those tasks. A passionate gourmet who once led culinary tours to Vietnam, she no longer has the hand strength or ability to stand for any length of time to do what she once did in the kitchen.
While keeping as busy as she used to isn’t an option these days, lending her voice to the cause of ALS research is something she feels she can do. She is the poster child for a team of fundraisers calling themselves Team ALS, for Annie’s Loyal Supporters. The group of about 30 people has collectively raised about $18,000 of its revised goal of $20,000. The original goal was $2,000, Annie says, but as word spread around her multiple circles of friends, the money and personal support has poured in.
“I’m at a stage where anything I can do to help, I’ll do. As for my team, I’m just blown away by them,” she says.
The couple’s friends have been amazing, she says, helping out in whatever way they can, from doing cleaning and cooking blitzes to keeping her entertained.
Karen England, the captain of Annie’s Loyal Supporters team for the ALS Walk, has vowed to make Annie laugh every day, and some of the creative ways she’s done that have left Annie in stitches.
One event they attended was drag queen bingo at Paparazzi nightclub in Victoria, spearheaded by England’s hairdresser. Not only was the spectacle of the event a hoot, Annie says, winning a Budweiser 24-pack backpack and $100 worth of erotic dance lessons made it all the more memorable.
It’s all part of trying to help Annie live life to the fullest, England says.
“I said to her one day, ‘you know Annie, there’s still time to have fun,’ and she said ‘absolutely,’” England recalls. “We’re trying to do a lot of those sort of things and have as much fun for as long as we possibly can. As long as she can still laugh, she’s going to participate in whatever we throw at her.”
The Grahams spent 16 years living and working in Yukon Territory after getting married in 1967 in Guelph, Ont. The personal bonds they forged up north were strong, and a number of their friends plan to come down to be part of the walk in Victoria on Sunday.
There’s a plan in the works for the Yukon crew to gather at some point on the weekend, which the couple look forward to. But Annie says the tough part these days is that visiting for very long wipes her out.
“Fatigue is what gets me, there’s no pain right now,” she reiterates, although the frequent nerve twitching in her arms and legs is uncomfortable.
While Annie is doing her best to keep her sense of humour, but is fatalistic about her diagnosis and her future, such as it is. One of her goals is to celebrate She and Garth, whom she calls “my rock,” hope to celebrate their 50th anniversary next year.
While she gets around these days in a motorized scooter emblazoned with “Annie’s Little Scooter” – another reference to ALS – Garth will be pushing her along the 4.2-kilometre walk route.
Annie has kept her mind occupied of late thinking about the walk, who’s coming to town for it, and how much the team will raise for ALS research. She worries about the aftermath, when the walk is done and everyone has gone back home and gone back to their lives.
“I don’t know what I’m going to do after the 18th. I guess I’ll have to look for some other causes to support.”
Aware that the disease is going to progress and slowly prevent her from doing what she does today, she and Garth are preparing to set up their home to accommodate her diminishing strength. A staircase chair lift is being installed in the coming weeks in their three-story home, and the ALS Society will be providing other equipment on loan in the later stages of this sad journey.
But for now, this vibrant woman is managing to smile and make the most of what she still has. Told in the spring to get her affairs in order and take any trips she wanted to take sooner than later, she has done so, but regrets she didn’t get to go ziplining.
“It’s about living each day and doing what matters,” she says.
To donate to Annie’s Loyal Supporters or find out more about the walk, visit bit.ly/2cHBRKe.