According to Kevin, there’s one word that sums up ALS: a thief. “ALS is a thief – and a remorseless one at that,” he explains in writing. Now that he can no longer speak, he uses eye gaze technology to type messages with his eyes – his only method of communicating. “The sooner we can arrest this thief, the better.”
When Kevin received his ALS diagnosis in March 2017, he was already walking with a cane. Then, in November of that same year, he was hospitalized with pneumonia and spent months there before returning home. He had lost the ability to walk, eat, and breathe on his own, but coming home was cause for joy and celebration.
Kevin’s wife and caregiver, Joan, says they are the kind of couple who finish each other’s sentences. Now, after 37 years of marriage, they are facing the challenges of ALS as a team. Joan says Kevin’s even temper has served him well. “He knows this is a random thing and there’s nothing he can do to change it. He’s internalized it and accepted it.” Joan’s pragmatic approach has also helped the couple deal with changes in Kevin’s condition that are difficult to anticipate because it’s hard to predict how the disease will affect him next. “I take it one step at a time,” she says, “and that seems to be working.”
Because there is currently no cure for ALS, fundraising for this year’s Walk to End ALS in Halton Region is helping to fuel hope of a future without ALS. Kevin’s team – “Kevin’s Tigers” – is making sure of that. Another message Joan shares with donors is the importance of community-based services for people and families living with ALS. “You’re helping us right now,” she says, pointing out the support she and Kevin have received from ALS Canada through education (particularly in the early stages of the disease), access to community resources, and loaned equipment through the ALS Canada Equipment Loan Program that helps keep Kevin more mobile and comfortable. Items on loan such as a wheelchair, hospital bed and therapeutic mattress have made it possible for Kevin to stay at home despite his quick progression. “The support we’ve received from ALS Canada has made a huge difference to us,” says Joan.
The 30-plus members of “Kevin’s Tigers” will be joining the Walk to End ALS for a second year in a row. Kevin won’t be able to attend the Walk this year because he is bedridden, but there will be a celebratory party at the house afterwards. Joan is looking forward to the day.
“Kevin’s Tigers” are roaring ahead of their fundraising goal of $3,500 and are on track to raise more than $5,000 to make a positive difference in the lives of people and families living with ALS. Two weeks before the event, Joan is busy sending out reminder messages to everyone who has pledged but not “ponied up,” as she explains. Typical of her can-do approach to life, she is working hard to ensure pledge fulfillment for a cause that is so very close to her heart.
The Walk to End ALS takes place in over 90 communities across Canada until September 2019. Register or donate to a Walk to End ALS near you at https://walktoendals.ca/ .
Your fundraising efforts and generous donations support the best ALS research in the country and enable ALS Canada to provide community-based support to people and families living with the disease in Ontario. Donations for all Walk to End ALS events are being accepted until December 31, 2019.