Running to support individuals and families affected by ALS
Endurance comes in many forms. Danielle Avery’s husband, Brent Toohey, passed away on April 25, 2021 after 6 years of living with ALS. Amyotrophic Lateral Sclerosi (ALS), also known as Lou Gherig’s disease, gradually paralyzes people because the brain loses communication with the muscles in the body, and eventually the heart and lungs.
Avery started running and became a team member of Ottawa Race Weekend organizing team in 2019, “As I morphed into a caregiver, I lost myself, I became dark and stormy and wasn’t a good caregiver to myself or my husband”, Avery shared, ”I decided July 1 last year I’m going to lace up and I’m going to run because I need to be a good caregiver. I need to survive this, or I wasn’t going to make it. This is not for the faint of heart for sure.”
By running the Bytown Challenge, Avery’s goal is to raise enough to provide another family with products necessary for adapting a home for someone with ALS, like an air hospital bed, and hydraulic lift to get in and out of bed. Generally these items cost about $4,000. Avery has already raised $7,600 to support ALS Canada. ALS Canada loans out products and connects to services in the area. “ALS Canada’s regional director acts as a social worker, and helped find places to take care of my husband’s personal needs. If I can raise money so that another family can have a bed and lift and someone to talk to then I want to do my part. This is not altruism alone, running helps me keep my head above water.”
”Running has been a, simple, easy, effective way to get out of the house, and get rid of yucky feelings. I don’t come home with solutions but I come home with a fresher perspective. About 7 minutes into any run, the first 7 minutes are a struggle, then my shoulders drop and absolutely I can feel it. Give me 5 minutes recovery after a run then I am good to go on the next task,” Avery laughed.
“Brent had endurance beyond measure”, accounts Danielle, “Typically after an ALS diagnosis people live about 24 months, Brent lived for 6 years. His motor neurons progressively made his muscles stop talking to his brain. He became a quadrapalegic and required life support for three years. He worked up to the Friday before he passed though, using eye-tracking and voice recognition software. With 20% lung capacity Brent would script and code with his mouthpiece which serves also as ventilation. It was really difficult for him to breathe in.”
Brent Toohey and Danielle Avery were married on Christmas eve of 1999 and were together 28 years. The young couple moved to Ottawa in 1996 where Brent worked in high-tech and they raised their son, Jacob. “Brent ran a marathon in 2006 and was an amazing athlete. After his diagnosis in 2015, the same year as the speaker of the house Mauril Bellanger, MP, he outlived his prognosis by a long time. If he was lucky or unlucky to live this long, I don’t know.”
“It is a beautiful thing to take somebody to the end of their life, and to be able to help them, it is a beautiful thing. It is also the absolute worst thing…but it is not always a terrible thing.”
Avery completed her Bytown Challenge on June 2, Lou Gehrig Day. Lou Gehrig was diagnosed 82 years ago at age 36, the prognosis is still the same for those diagnosed with ALS today as it was then. A degenerative and debilitating disease requiring significant medical equipment, such as lifts, air beds (to prevent bed-sores) and other products to accommodate a rapid reduction in bodily function, eventually leading to inability to walk, talk or even breathe.
“Accommodations to the home and products needed are profoundly expensive! The average person couldn’t afford it. People make due as best they can, but that often leaves people unable to access parts of their home or comforts they once had, like access to a bath.”
ALS Canada supports those impacted with product loans, like air beds, lifts, and personal support worker subsidy. They advocate at federal and provincial levels to give voice to individual needs, and provide regional support groups.
Their son, 26, has recently become a commercial pilot and has been at home helping care for his father. Danielle and Jacob are grieving their loss and she says “coming out from a time of extreme vigilance from caring for someone who is extremely ill with a terminal diagnosis. After Brent’s diagnosis our family appreciated each other more and we don’t take anything for granted.”