When Trish Silvester-Lee of Surrey BC was 17, a downhill skiing accident sent her competitive sports future into a tailspin. Reinjuring her knee over the next four years, by her early 20s she’d had reconstructive knee surgery and by her 30s, a diagnosis of osteoarthritis.
Now at 63, her past thirty years living with the disease has been a journey of discovery, finding reward in helping others and rising to the challenge of optimizing a healthy life.
“I was an athlete. It was my identity. I was giving up who I thought I was, and my life has changed over the different phases of this disease,” she said. “It’s been a trial-and-error journey that changes all the time.”
She had to give up driving a stick-shift and adopted a lifelong focus on personal weight and exercise. She took workshops from gardening-with-arthritis to techniques for minimizing joint stiffness and pain. Being a graduate of the kinesiology program at the University of British Columbia (UBC) and sports training at the University of Calgary, she widened her sports focus to injury prevention and management.
After her first knee reconstruction at 21, Silvester-Lee was told she’d get arthritis. But the only person she knew at that time who had the disease was her grandmother.
“I didn’t think I’d get it ‘til at least my 60s. So, it was a shocker for me,” recalled Silvester-Lee. “It’s not just an old person’s disease.”
About one in five Canadians are living with arthritis, making it the predominant chronic ailment in the country. Osteoarthritis – the most common form – results from the body’s failed attempt to repair damaged joint tissues associated with aging or an injury. In inflammatory arthritis, joint damage arises from inflammation.
Older adults have additional factors to consider. Things like falls prevention, proper medication and staying active socially and physically are all important. Today, most arthritis organizations agree that the number of Canadians living with arthritis has now surpassed 6 million.
Research is seen as a key to moving forward, which is why Arthritis Research Canada, a recognized world leader, puts a strong focus on investigating techniques and self-management strategies for day-to-day living with the disease.
Silvester-Lee is a member of Arthritis Research Canada’s patient advisory board, volunteering along with other board members on projects such as the Stop OsteoARthritis (SOAR) program and participating in focus groups to advance ongoing studies.
She was recently part of a pilot that paired a Fitbit device – a physical activity tracker – with coaching from a physiotherapist. Led by Dr. Linda Li, senior scientist with Arthritis Research Canada in Vancouver, the team has since followed up with an app called FitViz, which is used in conjunction with the Fitbit so patients and their health professionals can set goals that reflect their unique circumstances.
Silvester-Lee is currently working with Dr. Jackie Whittaker, one of the SOAR project leads, and every year she shares a patient perspective with University of British Columbia physiotherapy students.
Working with researchers and communicating about her personal journey has been a life changer, she says.
“I like to know that I can help somebody else. Sharing my knowledge of what I’ve lived through hopefully will help them go through a better life journey and maybe even prevent this disease.”
Other studies, from helping rheumatoid arthritis patients take up strength training to counselling based on the Canadian 24-hour Movement Guidelines, are underway. A study 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 rheumatoid arthritis patients.
The disease doesn’t have to confine sufferers 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,” she says. “I’ve learned that focusing on what I can do, not what I can’t, that’s moving forward and making it better.”
And learning about the disease helps with the mental health aspect and averting other chronic illnesses associated with arthritis – such as heart conditions and diabetes that can arise from lack of exercise and being overweight.
“Being proactive is the biggest thing,” she encourages. “Don’t wait for things to happen. Even though it is not a great disease to have, we can still have quality of life.”
For tools and resources on how to live well with arthritis, visit the Arthritis Society of Canada at www.arthritis.ca
To learn more about current arthritis research or participate in a study, see https://www.arthritisresearch.ca/current-research/ .