Daphne and Kevin Rintoul will ride the ALS Cycle of Hope this year

Daphne and Kevin Rintoul will ride the ALS Cycle of Hope this year

Couple tackling ALS ride together

Watching father’s regression as he battles disease prompted decision to take on rolling fundraiser

Kevin Rintoul met his future wife, Daphne, when he was 16.

The childhood sweethearts’ relationship began with a friendship between two families – their parents were good friends already sharing camping, fishing and church trips together with their kids. Daphne’s brother was Kevin’s best friend when they met over Christmas holidays.

Her father, Ernie Wiens, made an impact on his future son-in-law.

“I have known Ernie since he was the protective father for Daphne dating as a (teenager),” Rintoul said, laughing. “We’ve known each other for a (very) long time.”

He reminisced about his active father-in-law from a time nearly 20 years ago, before Wiens received a deadly diagnosis after he began tripping over his own feet. Once an active cyclist who worked as superintendent of special services at the Sooke School Board helping special needs students, Wiens ironically found it increasingly challenging to help himself. He had amyotrophic lateral sclerosis, more commonly known as ALS.

The diagnosis came as a shock.

“It was absolutely staggering, I had no idea,” Rintoul said. “To do something simple like get to the washroom and brush his teeth was a 10-minute ordeal.”

“I had never witnessed that before,” he said. “That is the crazy thing about ALS, from outward appearances and cognitively, he is completely (the same). However, now he has these huge, huge physical challenges.”

About a year ago, the Rintouls got an up-close and personal look at the challenges of living with the disease, known in past decades as Lou Gehrig’s disease, when they served a short stint as caregivers for Wiens when his wife Alice fell ill. It was then that they realized the effects of the disease were more far-reaching than they first thought. Wiens’ struggles are even greater now.

“We are lucky he has a slow-progressing stream. It’s awesome, because we have him longer than we ever anticipated,” Daphne said. “But the downside is waiting for the penny to drop, because we don’t know what will happen to him.”

A chance meeting with Cindy Lister, co-founder of the ALS Cycle of Hope, piqued the couple’s interest in the annual ride, which winds more than 550 kilometres from Kamloops to Keremeos from Aug. 5 to 12 and raises money for research, awareness and support for families living through the fatal disease.

After going to an information meeting in February, Daphne, who works at Royal Roads University, and Kevin found themselves unable to stand idly by as Wiens’ muscles slowly eroded from the incurable disease. They both signed up.

“I think (my father) is pretty proud of me; I think he is surprised to see me doing as well as (I am),” Daphne said. “He would love to ride it, too.”

Wiens, however, will never ride a bike again. Even swallowing food and verbal communication are major challenges after 18 years with the disease. With that in mind, Kevin said the time was now to support their father through his journey on a deeper, more personal basis – and do it as husband and wife.

“I couldn’t imagine her doing it alone or myself doing it alone,” he said. “We always have done stuff together, that is just the way our relationship is. This has been incredible on so many different levels. (ALS) is something that really needs to be challenged, needs to be tackled. We really need a cure for this.”

For details on the ride or to donate, visit cycleofhope.ca.

alim@goldstreamgazette.com