Sustainable funding means sustainable assistance

Mark Vivarais was almost in tears as he walked back to his wife, Sandra, from a washroom at an outdoor outlet mall in Florida. He’d been stuck in there for half an hour, struggling to pull himself up from the low toilet seat.

“That’s when it hit me,” Sandra recalled. “Oh my god, this is starting.”

Three months before that trip, Mark was diagnosed with ALS. The shock of the diagnosis had rippled through his family of three children and five grandchildren. They knew he didn’t have much time before travel would become too difficult, so they all booked another trip.

On that trip, the hazy realities of his future started coming into sharper focus. It was clear that what used to be simple and instinctive movements – sitting down, getting up, walking – would no longer be possible without help.

“We knew at that point that toilets were a problem,” Sandra said. “That’s when we had to start looking at what we needed.”

Mark’s first piece of equipment was a wheelchair borrowed from the hospital. But he and Sandra quickly realized that he’d need a lot more as his ALS progressed. They also realized that almost every piece of equipment came with a high price tag, and there was no way they could afford it all.

But they didn’t have to.

Sandra reached out to ALS Canada for information and support, and received a home visit from Lianne Johnston, a local Regional Manager. Lianne told Sandra and Mark about the ALS Canada Equipment Program, which loans basic and essential equipment to people and families living with ALS for as long as they need it. Sandra calls it “the cupboard”.

Mark’s occupational therapist assessed his needs to submit equipment requests, and soon after, deliveries were arriving at his door – at no cost: a raised toilet seat with handles, a bench seat for the shower, a wheelchair-backed toilet seat, four different cushions, an electric lift, a chair lift, a hospital bed and mattress, and four different types of wheelchairs.

Altogether, Mark has had access to borrowing $45,000 worth of equipment, thanks to the ALS Canada Equipment Program which is wholly funded by donors.

The equipment has made a world of difference not only to Mark, but to Sandra and his personal support workers too. Mark can maintain as much independence, comfort and dignity as his body allows, while his caregivers are safer and have a much easier time lifting, moving and helping him. Even Mark’s five-year-old grandson, Keaton, has learned how to work every machine in the house. Although Keaton is still too young to understand what’s happening to his grandfather, he knows how to carefully position Mark’s legs, hands and mouthpiece.

“All Mark’s grandkids keep his spirits going,” Sandra said.

Mark is one of many Ontarians living with ALS who need a wide range of equipment to cope with the daily challenges of decreasing mobility and communication ability. It starts with a walker or a wheelchair, and depending on the speed of someone’s disease progression, can snowball into many more items that can cost thousands of dollars.

Without the ALS Canada Equipment Program, families’ like Mark’s would either carry a heavy financial burden, or they’d have to go without the equipment they need. That means they wouldn’t be able to move around; to bathe or use a toilet safely; to get on and off a bed; or even to hold their heads up.

“ALS Canada always had the next thing we needed,” Sandra said, adding that the organization has been quick to respond to their requests. Although their experience has been extremely positive, they’re well aware that people have to wait longer periods of time to access equipment if what they need isn’t readily available, a reality of a donor-funded program.

With this understanding and gratitude for support received, Sandra has become a highly motivated fundraiser and advocate. Every year, she passionately raises money through the Walk to End ALS in her hometown of Cornwall. She’s delighted that 60% net proceeds raised goes directly toward community-based support services for people living with ALS in Ontario.

“In years and years to come, I will be one of the pushers to make sure that the equipment program carries on,” Sandra said. “Fundraising for the program is one way, but we also need all levels of our government to step up. I’m going to fight for those who need this.”