“Their Parkinson’s illness and the reason they’re living together and have their care-aids and why they remain in their home rather than a facility, is a story that affects probably every Parkinson’s patient,” says Ella Brown, a care worker, of siblings Reg and Pat Hein.
Reg needs medication every two hours, day and night, or he freezes up and ends up in severe pain. Brown flips through a binder with Reg’s extensive medication schedule. In the bottom corner, it lists how many hours of sleep he got on each day. Some of them don’t reach two hours. The longest one she flipped by was just over six hours.
“Every two hours I go from nearly frozen to nearly normal,” he says.
Getting to this point has been a long journey for Reg.
At 32, he suffered a back injury which prompted his Parkinson’s disease. For a young man with a wife and family, it was a life-changing time. However, for years after being diagnosed with Parkinson’s, Reg continued to work. First, he continued in the trucking business.
“Reg learned how to fight for every minute of life. That’s why he’s such a fighter. He has more desire and will to live than anybody I know,” says Pat.
For seven years, Reg did non stop drug testing for Parkinson’s because, at that time, they could not test medications and treatments on animals. He underwent what were dangerous experimental treatments one of which was successful and one of which was not. He doesn’t think he would do it again if he were to start over.
“I would have to say no. I would like to think I volunteered for the first studies because it was very important from the stuff they learned from me and our family,” he says. “A certain per cent of Parkinson’s is hereditary. They didn’t know that until they found it genetically in us.”
Reg pulled out a binder full of newspaper and scientific articles. While none of them mention him or the family specifically by name, instead referring to “an anonymous German-Canadian family,” they seem to hold emotional value to Reg.
There’s a 50-50 chance his children will also get it, says Reg, adding that they could get tested ahead of time.
“I’ve thought about it and I don’t think I’d want to know.”
After he moved to 100 Mile he, along with Pat and another brother, opened The Olde English Fish & Chip shop before it changed to the Olde Steak & Seafood House but eventually with all three of them having Parkinson’s the illness took a toll and they had to close up shop.
In 1998, his sister Pat took on being his sole caregiver. She had to stop that responsibility when she herself needed surgery in October, which also resulted in some of her medication having to be cut back, which combined has made an impact on her.
“I have a bit of hostility. How much I’m going to improve I don’t know.”
The surgery has made living in their home a lot tougher in all kinds of ways. Reg is in his wheelchair about 85 per cent of the time and while they’ve added a ramp to get in and out of the house. However, when he took his wheelchair out on the ramp, he had to get up because of a little ridge in the doorway. Another concern is that from a wheelchair neither he nor Pat can reach the top cabinets. Getting into the bathtub is another problem.
“He’d fallen right into the bathtub. He couldn’t get up,” says Pat. “Feet up.”
While Reg has caregivers, these types of issues make living at home much tougher and living somewhere else isn’t really an option for Reg. For someone at Reg’s stage, who needs medication every two hours, in a place like a hospital, there’s not enough staff to guarantee they can maintain that level of care for any Parkinson’s patient, according to Brown (though staff would make every attempt to follow medication instructions).
“If I went into a facility, I believe they’d kill me… It is not for me,” says Reg.
Living in their home is the very best option, according to Brown.
“Reg is in a wheelchair but he can function and he does all of the main repairs in this house,” she says. “He is totally amazing and that’s what’s really inspired me to say this is where you need to be.”
They got the ramp with the help of some fundraising and some volunteers (and Reg helped built it himself, says Brown).
“If he’s in a facility he doesn’t get to work with power tools or raking the lawn.”
However, fixing the many issues at hand will require a bit more help so Brown got in touch with Habitat for Humanity.
“This will be their first project here in 100 Mile House,” says Brown.
Absolutely there’s something they can do to help, says Habitat for Humanity executive director Bill Miller, who’s been dealing with issues such as these for 40 years.
“When I heard about this particular situation from Ella, yeah it’s something that definitely would fit in our Habitat Handyman program and/or, now that I’ve been up there and had a look at it, something that we may be able to facilitate through our homeownership program [to replace the home].”
The intent of the Handyman program, which they’re rolling out slowly, is designed to help shut-in seniors with small projects that contractors don’t typically want to do with little or no cost. When it comes to entire home replacements that’s something they typically do for families but also for seniors, according to Miller.
Either way, this project is gonna incur some costs, says Miller, adding that they’ll seek some funding from federal and provincial sources, as well as some fundraising. He’s hopeful that they’ll be able to get some materials and contractor time donated. They’ll also need to find accommodation for them during the work.
Brown has set up an account at the Credit Union for donations in hopes of getting the ball rolling.