For Shanna Juszko, the hardest part about losing her mother is not being able to hear her voice.
“I used to talk to her three times a day,” Juszko says.
Juszko’s mother, Dianna Goffin, passed away from amyotrohpic lateral sclerosis, or ALS, in July, after a short, seven-month battle with the disease.
“For me, it’s (remembering her) every day. I wake up in the morning and think, ‘Oh, I haven’t talked to mum in awhile, I should call her.’
“Then I realize…,” she says, her voice softening as her eyes grow damp.
ALS, commonly known as Lou Gehrig’s, is a fatal neuromuscular disease. It attacks the body’s nerves, used to send messages from the brain to the muscles. Eventually, those diagnosed with ALS lose all mobility, including the ability to speak, swallow and breathe. However, the brain often remains healthy and alert.
The average life expectancy for people diagnosed with ALS is three to five years.
Born in Comox, Dianna spent most of her life in Campbell River and lived in Courtenay for the past six years. The active 64-year-old loved hockey, golfing and knitting. But most of all, she loved her family.
“She just loved life, and travelling, and spending time with family and friends,” her daughter says.
After retiring, Dianna spent the next 11 years travelling throughout B.C., the Yukon, Alberta, and the western United States with her husband, Bob Goffin.
The couple of almost 45 years spent winters down south. But this past winter, their trip was cut short. After leaving their Courtney home last October, Dianna knew something was wrong.
“Her muscles were twitching and she just generally didn’t feel all that great,” Juszko recalls.
By the end of November, the Goffins returned to Saanich, convinced by their daughter to stay with her.
Dianna was diagnosed with ALS on Dec. 5, 2011. “She was angry,” Justzko says. “She was really angry. And for the first little while (asked), ‘Why me? Why did this happen to me?’”
In January, her health took a downturn. During a family outing, Dianna experienced a foot drop, a common sign of ALS where the muscles in the foot become too weak to lift the leg.
She learned let go of the anger, and Dianna started enjoying the time she had left with her family.
The Goffins even hosted a family barbecue, with about 25 guests, at their home the night before Dianna passed.
“We didn’t realize it was going to be that fast,” Juszko says. “She actually came outside and sat with everybody for the barbecue.”
That next day, on July 10, Dianna’s breathing got worse. And within 45 minutes she passed away with her family by her side.
“She decided she wanted to go gracefully, with as much dignity as possible. She fought it right till the end.”
Juszko, her father, and almost 30 family and friends will participate in the Victoria Walk for ALS on Sunday, in memory of Dianna. It’s their first year walking to help raise funds for the ALS Society of B.C. – which goes towards equipment and support for families affected by ALS, as well as research to find a cure.
Besides supporting the Goffin family, the society also provided Dianna with much-needed equipment and care, which costs an average $137,000 per patient.
The Victoria Walk for ALS takes place Sept. 16, 12:30 p.m. in Lot 6 at the University of Victoria. The walk around Ring Road starts at 1 p.m.
Last year’s event raised $28,000. This year, organizers aim to raise $35,000.
To register for this year’s walk, see walkforals.ca. For more information, email firstname.lastname@example.org.
Grim facts of ALS
About 3,000 Canadians currently live with ALS and each day, two to three Canadians die from the disease.
There is no known cause of ALS, nor is there a cure. Ninety per cent of those diagnosed with ALS die within five years.