Recovering a lost year – Videoconferencing care to help stroke patients

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Ice cold. That is how 57-year-old Kenora resident Bill Millar’s left hand felt while he was working in his garage on the May long weekend in 2005. Hours later his hand started to curl up. Later, the pain started. As the days went by, Bill lost vision in his left eye and started to lose his voice.

Initially, his symptoms were intermittent, appearing and disappearing over several days. It took doctors a week to diagnose the stroke. Up until then, he had been an active mechanic accustomed to working 14-hour days. The stroke he had just suffered would dramatically change his life.

He can no longer work, but Bill is still lucky. His vision and voice returned and he does not need a wheelchair or cane to get around. But getting to his current state was a long, often frustrating journey – or, in Bill’s words “a lost year.” Bill’s lost year ended when he started participating in an education and exercise rehabilitation program.

Created at Baycrest in Toronto, the program, called MOST- Moving on After Stroke – provides stroke survivors and those caring for them with the knowledge, skills and confidence to manage their condition on their own. Bill participated through live, two-way videoconferencing.

“Bringing rehabilitation expertise to smaller communities is a major aim of the program,” says Dr. Maria Huijbregts, Director of Clinical Evaluation at Baycrest and designer of MOST. “Smaller communities almost never have access to a group – which means these survivors typically don’t receive any peer support.”

Originally developed for survivors at Baycrest, MOST was recently adapted for videoconferencing, making it available to people living far away from Toronto. MOST relies on ONEª Network – Smart Systems for Health Agency’s (SSHA) secure high-speed network for health care – to connect stroke survivors to physiotherapists, speech pathologists and coordinators at hospitals across Ontario. MOST runs over Ontario Telemedicine Network – one of Canada’s busiest and most comprehensive health care videoconferencing programs.

Delivering stroke rehabilitation through technology is new in Canada. Bill’s session in 2006, held at Lake of the Woods District Hospital in Kenora, was one of the first. Sessions run twice a week for nine weeks. They include exercise, discussions on goal setting, coping strategies, medications, daily activities, pain management, nutrition and community resources. Bill and his wife Trudy joined 13 others at hospitals in Thunder Bay and Geraldton.

“Without the technology, we couldn’t deliver this program to rural sites,” says Denise Taylor, MOST Study Coordinator in Thunder Bay. “Technology allows us to reach people who otherwise would be unable to receive this group support follow-up care once they are home.”

“Technology also allowed us to pool our resources,” adds Maria. “Not only can we provide MOST to survivors in remote communities, but we can extend our knowledge to the professionals working in these areas. Now, some of them are trained and can deliver the program to survivors in their area, as well as to survivors in even more distant locations.”

For example, initial pilot projects ran out of Baycrest and linked to communities such as Thunder Bay; now Denise Taylor can run MOST from Thunder Bay’s St. Joseph’s Care Group and videoconferences to smaller communities. Denise consults regularly with Maria at Baycrest but Baycrest is no longer the only centre responsible for delivering care. Over the next three years, stroke survivors in various northern Ontario communities such as Dryden, Marathon and Manitouwadge may have access to MOST. This is good news for survivors and their care partners. According to Maria, who has recently reviewed the results from Bill’s session, all 10 participants accomplished their goals.

“Overall, there was an improvement in physical function and well being. Findings from the focus group and interviews revealed the program provided both stroke survivors and care partners with greater awareness and acceptance, increased social support and improved ability to cope. In addition, participants reported a decrease in their perceived loneliness when they were able to share with others in a similar situation, even if they were in a different community. All reported that videoconferencing decreased their sense of isolation.”

Fortunately for Bill, his lost year is now behind him.

“The videoconferencing sessions showed me what I can do, what I can’t do and what I was doing wrong,” says Bill. “Before these sessions I never stopped, I kept going until I played myself out. Now I pace myself, I don’t get as tired and I do exercises I wasn’t doing before to build strength and keep the muscles I still have.”