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Supporting stroke patients

Date Posted: Tuesday, September 11, 2007
Author: Christen Pears

Stroke can affect anyone at any time. Mark Selley was just 39 years old when he suffered a stroke. A keen powerboat racer and community activist, he worked at The Lobster Pot and led an extremely active and busy life. He was completely unprepared for what happened in November 1990.

“I was in the middle of organising a Christmas party for special needs children. It was a busy time and I was stressed. When I got sick I couldn’t believe it. I remember asking the nurse for a phone so I could finish what I’d been doing. I didn’t realise how serious it was,” he says.

Mark was taken to the Spaulding Rehabilitation Hospital in Boston, where he remained until March 1991. It was a long and difficult process and he admits that at times it was a struggle to carry on.

He says: “I had no independence. I thought the future looked pretty grim but I tried not to let it get me down because I had my kids. They were one year old. They were the reason I overcame my problems.”

He began to write about what he was going through as a way to keep his mind occupied and work through his feelings. His writing was eventually used a neurologist at Harvard Medical School in a book about the experience of patients.

Mark says: “Unless you’ve been through it yourself you have no idea what someone is going through. My family were worried that I would become institutionalized during my time in rehab so that made me have doubts too. I had run the Lobster Pot for over 20 years and suddenly I didn’t know what I was going to do. I was facing an uncertain future.”

As he left Boston to return to Bermuda he threw his wheelchair out of the taxi into the snow.“I cried when I did that because it had become my own best ally but I knew I had to move on.”

For Mark, moving on has been about adapting. He hasn’t been ambulatory since his stroke and has put on more than 100 lbs but although he has been forced to make changes to his lifestyle, he still remains active. He now runs his own boat trailer business, driving a specially adapted Jeep. He also set up the Bermuda Healthcare Consortium, which campaigns for patients’ rights, and the Bermuda Stroke and Family Support Association, which provides a support network for stroke patients and their families.

He explains: “Cancer is much more high profile than stroke. I’m not saying one is more important than the other but we need to have the same priority because of the devastating effects.

“Stroke patients tend to suffer more intense, long-lasting depression than other critical illness patients. I became first party to this in Boston. They had a support group in Spaulding but I was so inside myself I thought it would be more depressing. Then I got involved and decided that this is what I should do in Bermuda. I saw what my family and friends were going through. There was nobody they could call and nobody to turn to.”

The group, which meets on the third Wednesday of every month at King Edward VII Memorial Hospital, is modelled on the group in Boston. It provides support, advice and encouragement. The Bermuda Stroke Association is also raising funds for a neuro stroke rehab unit in the existing Perry Ward. The 26-bed unit would cater for all neurological conditions, including spinal cord injuries, and would be free for those who don’t have funding. However, with plans to build a new hospital, the future of the project is currently uncertain.

Mark says: “The project has been approved and disapproved about seven times but I have been fighting for it for 15 years and I’m not about to give up. We need it here. There is an average of one stroke a day in Bermuda. Some wipe people out completely - about one third die - others have devastating long-term effects. A quarter of survivors will become independent but the rest are disabled to varying degrees. Proper rehabilitation and support are essential.”

Stroke Facts

What is stroke?

Risk factors

Stroke can affect anyone at any age but there are a number of factors that increase risk:

Warning signs For more information about the Bermuda Stroke and Family Support Association contact Mark Selley on 236 0037.