When Trish Silvester-Lee from Surrey BC was 17 years old, a downhill skiing accident put her competitive sporting future on the back burner. She re-injured her knee over the next four years, had reconstructive knee surgery in her 20s, and was diagnosed with osteoarthritis in her 30s.
Now 63 years old, for her the past thirty years of living with this disease has been a journey of discovery, finding the reward in helping others and the challenge of optimizing a healthy life.
“I was an athlete. It was my identity. I was letting go of who I thought I was and my life changed at different stages of this disease,” she said. “It’s been a trial-and-error journey that keeps changing.”
She had to give up driving the shifter and adopted a lifelong focus on personal weight and exercise. She has taken workshops ranging from gardening with arthritis to techniques to minimize joint stiffness and pain. A graduate of the kinesiology program at the University of British Columbia (UBC) and athletic training at the University of Calgary, she broadened her athletic focus to include injury prevention and management.
After her first knee reconstruction at 21, Silvester-Lee was told she would develop arthritis. The only person she knew at the time who got sick was her grandmother.
“I didn’t think I’d get it until at least my 60s.” So it was a shock to me,” Silvester-Lee recalled. “It’s not just an old man’s disease.
About one in five Canadians live with arthritis, making it the country’s most prevalent chronic disease. Osteoarthritis – the most common form – is the result of the body’s failed attempt to repair damaged joint tissues associated with aging or injury. In inflammatory arthritis, joint damage is caused by inflammation.
Older adults need to consider other factors. Things like fall prevention, proper medication, and staying socially and physically active are all important. Today, most arthritis organizations agree that the number of Canadians living with arthritis has now exceeded 6 million.
Research is seen as the key to moving forward, which is why Arthritis Research Canada, a recognized world leader, places great emphasis on research into self-management techniques and strategies for everyday living with this disease.
Silvester-Lee is a member of the Arthritis Research Canada Patient Advisory Board, volunteering with other board members for projects such as the Stop OsteoARThritis (SOAR) program and participating in groups focused on advancing ongoing studies.
She was recently part of a pilot that paired a Fitbit device — a physical activity tracker — with coaching from a physical therapist. Led by Dr. Linda Li, lead scientist at Arthritis Research Canada in Vancouver, has since followed up with an app called FitViz, which is used in conjunction with Fitbit so patients and their healthcare providers can set goals that reflect their unique conditions. .
Silvester-Lee is currently collaborating with Dr. Jackie Whittaker, one of the leaders of the SOAR project, shares the patient’s perspective with University of British Columbia physiotherapy students every year.
Working with researchers and communicating about her personal journey changed her life, she says.
“I like to know that I can help someone else. Sharing my knowledge of what I’ve been through will hopefully help them have a better life and maybe even prevent this disease.”
Other studies are underway, from helping rheumatoid arthritis patients start strength training to counseling based on Canada’s 24-hour exercise guidelines. A trial in Alberta on a decision aid for osteoarthritis patients considering knee surgery is ongoing. Two University of Calgary teams are investigating treatment tools and more holistic health care to help patients with rheumatoid arthritis.
The disease does not have to limit the sufferer to a life of inactivity. Silvester-Lee emphasizes the importance of doing what you enjoy, just keep it within the parameters of your age and personal limitations.
“I may not be able to ski, but I can walk, I can do yoga, I can go to the pool or do chair exercises,” he says. “I’ve learned that focusing on what I can do, rather than what I can’t do, is a move forward and better.”
And learning about the disease helps with the mental health aspect and prevents other chronic conditions associated with arthritis – such as heart disease and diabetes, which can arise from lack of exercise and excess weight.
“Being proactive is the biggest thing,” he encourages. “Don’t wait for things to happen.” Even if it’s not a major disease, we can still have a quality life.”
For tools and resources on living well with arthritis, visit the Arthritis Society of Canada website at www.arthritis.ca
To learn more about current arthritis research or to participate in a study, visit https://www.arthritisresearch.ca/current-research/ .
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