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Accreditation - Self-management programs help people live with chronic condition

When Ruth Goldsmith realized she could no longer visit her sister in England, she knew she needed help.

At the age of 80, her mobility had decreased to the point where she was unable to perform regular daily tasks or see her friends.

She tried everything: medications that promised to control her disease, painkillers that provided her with temporary relief, and even two hip replacements. Nothing gave her the long-lasting solution she was looking for. Then her friend told her about a 10-week day program at Baycrest, focused on helping community members develop the skills they need to live with a chronic condition at home.

Goldsmith joined the Program for Arthritis Control through Education and Exercise (PACE-Ex), part of a suite of self-management programs at Baycrest that also includes the Parkinson’s Early Management Program and the Moving On after STroke (MOST) program. Each of the programs are designed to foster effective coping strategies for a specific incurable condition, are based on self-referral, and combine exercise, education and group discussion to tackle chronic disease management from every angle.

In particular, PACE-Ex helps arthritis patients deal with the basic, physical aspects of their illness by addressing issues like proper exercise, pain management, relaxation, sleep and grooming. It also provides guidance on how to access and use community services, including sessions on navigating health care, speaking with your physician and selecting appropriate alternative therapies.

But Goldsmith says her most valuable lessons came from the more intangible, psychosocial benefits of the program, which focused on goal setting, group support, good communication and an emphasis on acceptance.

“For me, the worst part of arthritis is its emotional toll,” says Goldsmith. “It’s hard to accept you physically can’t do all the things you used to. Even more difficult, it’s hard for the people around you to understand it. PACE-Ex showed me I’m not alone, that my limitations are real and have to be respected. It helped me accept my disease. That’s the first step in really managing an illness – to accept what is and move forward from there.”

Goldsmith credits PACE-Ex with giving her the courage to speak to her friends and family honestly about how her life was changing, and how that would change her relationships. In particular, she summoned the courage to make a long-dreaded phone call to her sister to break the news she’d no longer be able to make her yearly trips overseas.

“It was hard, but she was really supportive. She accepted it because I accepted it,” says Goldsmith. “It’s not a choice, it’s my new life and I’ve learned to make it work. Much of that progress is thanks the knowledge and support I received at Baycrest.”

Since their start in 1994, Baycrest’s self-management programs have helped more than 950 community members. Participants in the programs report impressive results, including more time spent exercising, enhanced coping skills, better communication with their health-care providers, and a significant reduction in the extent to which their condition interferes with their day-to-day activities.

MOST has branched out to reach clients through Telehealth, making it accessible to people who are unable to travel to Toronto, including those in Northern Ontario. For all the programs, both on-site and remote participants are provided with individual workbooks, where they can document personal goals and access educational resources. The workbooks provide a long-term reference for clients after they leave their program, allowing them to continue their exercise and regularly renew their commitment to effectively managing their disease.

Goldsmith continues to refer to her PACE-Ex workbook when she’s feeling pain. “When my shoulder hurts, I can just look up the exercise that will help me,” says Goldsmith. “It just goes to show how sustainable the approach is, and how helpful it’s been to me.”

“They teach you practical things about how to go about your day – like how to use an assistive device to open the door or eat. It sounds simple. These are the things no one thinks about. But it can make such a huge difference to your quality of life and independence.”

For more information about the following self-management programs, contact Physiotherapy at 416-785-2500, ext. 2683:

• Program for Arthritis Control through Education and Exercise (PACE-Ex)
• Parkinson’s Early Management and Self-Management programs
• Moving On after STroke (MOST)

To find out about the Osteoporosis: POWER Program, contact the Day Treatment Centre at 416-785-2500, ext. 2588.