Entering his 60’s, Ed Parcells was in the best shape of his life. He ran most mornings, cycled 60-100 km a few times a week, and played hockey on a regular basis. At the time, he and his wife Ev had sold their house and were looking forward to travelling and enjoying their retirement together.

Receiving the news of Ed’s ALS diagnosis in November 2017 was a “devastating blow.” Ed says at first, he did not believe the news and remained in denial, but as his symptoms gradually worsened, he says he had to accept his new physical reality. “I try to find gratitude and appreciation for each day, and treasure every moment with my wife,” Ed explains. “You never know what the next day will bring.”

Ed speaks lovingly about his relationship with Ev, and the significance of feeling supported when facing the daily struggle of a disease like ALS. Ed and Ev first met in high school and again later in life. They have been happily married for “nine blissful years,” says Ed, “a dream come true for both of us.”

Ed says that he and Ev laugh together and enjoy dancing together when a good song comes on. Ed explains that their wedding song, Aerosmith’s I Don’t Want to Miss a Thing, “holds true for our love today. We have something very special.”

Ed is also grateful for the support he receives from ALS Canada, including the opportunity to attend a support group once a month and the equipment he can access at no cost. Nowadays, he can only walk very short distances before the muscles in his legs seize up. To cope with the effects of ALS on his respiratory system, he uses a BiPAP machine on loan from ALS Canada to help him breathe more easily. “I use the machine every evening, and when I lay down in the afternoon, I seem to feel more rested if I use the BiPAP machine.”

Ed recognizes the importance of fundraising for important community-based support and services and for the promise of ALS research. “One day, ALS won’t be a terminal disease,” he says. That is the hope that fuels much of the effort and enthusiasm behind the Walk to End ALS in approximately 90 communities across Canada — including Peterborough, Ontario where Ed will be participating on Saturday, May 11.

This is Ed’s second year taking part in the Walk. Joining him and Ev this year are their four grown children, Brian, Mike, Clay, Kristi, their children’s partners, friends and neighbours. Co-workers from General Motors — where Ed worked for more than 30 years before retiring in 2009 — are also showing their solidarity. They’ll all be walking as part of “Team Ed.”

Ed describes the Walk as an upbeat day. “Everyone seems happy to come and enjoy the Walk, the music and the food, all for a good cause,” he says. “It’s great to feel support from everyone.”

The Walk to End ALS takes place in approximately 90 communities across Canada until September 2019. Register or donate to a Walk near you at  https://walktoendals.ca/ .

Your fundraising efforts and generous donations support the best ALS research in Canada and enable ALS Societies to provide community-based support to the approximately 3,000 Canadians  and their families living with the disease. Donations for all Walk to End ALS events are being accepted until December 31, 2019

Posted in: Stories, WALK for ALS