When Pauline Hunt was diagnosed with Amyotrophic Lateral Sclerosis in 2009, one of the first things she did was head out on a series of trips with her husband Simon and daughters Emily and Madeline. Now, they’re back in Revelstoke, looking at moving forward as the disease progresses.
ALS, commonly known as Lou Gehrig’s Disease, is a disease that slowly causes the degeneration of that cause the degeneration of the muscles, eventually leading to paralysis. According to the ALS Association, the life expectancy of an ALS patient is two to five years, 20 per cent live more than five years, 10 per cent more than 10 years, and five per cent live more than 20 years. The physicist Stephen Hawking is the most prominent example of someone living a long, productive life with ALS.
So far, Pauline is beating the odds. Four years after getting ALS, she is still able to walk using a walker and has been placed in the ‘slow progression’ category of the disease. “I think part of being in the slow progression category is due to positive thinking and being surrounded by a lot of support here in Revelstoke and beyond, and making life easier,” she said.
At the same time, there is an element of mystery, where the effects of ALS could speed up, or even slow down. “That’s the problem – it’s a disease where you really have no idea what to expect,” she said.
ALS will eventually put Pauline in a wheelchair. The Sixth Street home she and her family lives in – with its elevated entrance, narrow hallways, small rooms and poor insulation – will not be suitable for her in the future. They looked at moving, but found that they would likely have to renovate any home they moved into.
That’s where Cindy Pearce came on board and decided to push the Hunt’s renovation project to the Kelowna chapter of Habitat for Humanity through its ReNewIt program. The result has been a partnership between the Hunts, Habitat, and the Revelstoke Community Housing Society, who has come on board as a sponsor for the project.
The plan, based on input from health professionals, will provide wheelchair access, cost-effective heating, a large master bedroom, a modified private bathroom that would be able to accommodate future care needs, one or two extra bedrooms for the girls and a live-in caregiver, and an open-concept kitchen and space for family activities. To make room for all of this, a second storey will be added to the house.
The project will have lasting effects on the community. The Hunts will pay a mortgage on the renovations to Habitat for Humanity and all the money they pay back will go towards future housing projects in Revelstoke.
“Having H for H on board allows us to create a legacy for the community,” Pauline said. “It was a way for us to have this done but also a way for us to give back to the community.”
Cindy Pearce is leading the efforts to gather support for the project. So far, the Royal Bank Foundation has contributed $10,000 towards the project and a fundraising team has been put together consisting of friends, family and other local residents.
“That’s the beautiful thing about Revelstoke,” said Hunt. “It is a community that really cares and is very giving. Everywhere I turn someone is offering to help us with the kids, help us with the meals, pick up the kids – do things like that all the time. It’s really amazing to be surrounded by this kind of support and care.
“People that I know that have this disease in other places, it’s a lot more grim. They don’t have that great network.”
Work on the renovations is expected to take place throughout the summer of 2013 and the hope is to finish by next winter.
“We’re happy to bring the Habitat program to Revelstoke for this worthy project,” said Lona Manning, executive director of Habitat for Humanity Kelowna. “Habitat is all about people coming together to give a family a hand up, not a hand out – and we believe Revelstoke has the heart to help the Hunt family in their time of need.”
To learn more and/or take part in the project, an information session will be held at the Powder Springs Hotel on Tuesday, Dec. 4, at 7:30 p.m.