It is something most individuals don’t think much about, and yet, it is of the utmost importance for anyone spending considerable time in a wheelchair – proper seating. For Kathleen Degenhardt, sitting in an uncomfortable wheelchair wasn’t just wearing on her nerves, it was wearing down her body.
Diagnosed with Fibrodysplasia Ossificans Progressiva (FOP), Kathleen is one of very few individuals to have the rare condition in Saskatchewan, let alone Canada. Although showing signs of FOP early on, Kathleen was misdiagnosed until the tender age of four. “What FOP does is – I’m essentially growing a second skeleton. Bones grow in my muscles, tendons, and ligaments, which then in turn, over time makes me lose mobility,” explains the 29-year-old who has thoroughly educated herself on the condition that affects less than 1,000 individuals worldwide.
Although experiencing pain is something Kathleen contends with on a regular basis, the discomfort she was experiencing due to her wheelchair eventually hit its peak. “My wheelchair is a normal, manual push wheelchair. Over time it just became increasingly uncomfortable. I could only sit in it for 20 minutes at a time and then I’d need a break. With my parents’ help I tried to make it more comfortable. The seat sagged, which really bothered my legs, so we put a piece of plywood over it and then my cushion over that,” laughs Kathleen, recalling all the DIY adjustments constructed in an attempt to make sitting in her wheelchair tolerable. Eventually, with the encouragement and recommendation of her Occupational Therapist, Kathleen was ready to elicit the help and expertise of the Specialized Seating department at SaskAbilities.
I honestly couldn’t believe what they could do there. They really did change my life.
Making the nearly four-hour drive from Goodsoil to Saskatoon this past summer, Kathleen was cautiously optimistic as she anticipated her appointment. Awaiting Kathleen’s arrival was the Specialized Seating team, including Technician Dale who was ready to put his many years of expertise and creative problem-solving to good use. “For someone with such a challenging condition that makes her body form and shape in unique ways, she didn’t have much adaptive seating,” admits Dale, while giving credit to Kathleen’s parents for doing their best with the resources they had.
Dale and the Seating team along with the support of a local Occupational Therapist went to work assessing Kathleen and figuring out exactly what she needed. “We had a lot of discussion with Kathleen to see where she needed support, what position she was most comfortable sitting in, and where she was getting the most pain. We then took that information and figured out how we could accommodate the necessary changes.” The finished product included custom fabricated leg supports on her already existing elevated leg rests and a built-up seat that included a reverse wedge so Kathleen could sit comfortably at an angle with the least amount of pain. The system worked so well that Kathleen’s Occupational Therapist in Goodsoil had the team replicate what they did for her manual chair on a newly ordered tilt chair when it arrived.
The end result has made all the difference in Kathleen’s day-to-day activities, including travel. “I went from a chair that I could hardly sit in to one that I can comfortably be in for hours and that makes life so much easier. I honestly couldn’t believe what they could do there. They really did change my life,” says Kathleen. For Dale and the team in Specialized Seating it’s more than just another day at the office, “It was a pleasure and an honour to work with Kathleen. She is such a bright, delightful person, and to see the huge impact our work has had on her day-to-day life, well it’s why we do the work we do here. I am very proud to work with a team and an organization that is dedicated to improving the lives of people like Kathleen.”
