Wednesday, July 19, 2017

Ron Smith - 'stroke is to be avoided'.

Ron Smith returns with a second blog about his recent speaking tour in Canada and the steps he now takes to prevent a stroke.

What has inspired you to give talks in hospitals and libraries?
Initially I decided to go on tour to promote my book, The Defiant Mind: Living Inside a Stroke, which I wrote because I felt that most people did not understand what a stroke was or what it entailed. Not only does the general public have a limited understanding of a ‘brain attack’, so does the medical profession. I felt I received excellent ‘physical’ therapy but little or no ‘brain’ therapy. And it was my brain that had been damaged. My feeling is that knowledge of stroke stories would go a long way to solving many of the weaknesses in treatment and stroke recovery. The more anecdotal information we have the better. Stroke survivors are reluctant to talk about their strokes for fear of being thought ‘crazy’ and yet stroke stories may be the basis for some very important information about how the brain functions. What is often happening in the brain of someone who has suffered a stroke is ‘different’, not abnormal or aberrant.

What are some of the challenges that you have heard from stroke survivors and families you have met?
I think the biggest and most frequently repeated challenge for most stroke survivors and their families is the sudden termination of therapy. What do I do next? And who is going to help me now? No matter where I’ve travelled, hospital stroke recovery programmes end far too abruptly. There is not enough advice given or assistance provided to make the transition from hospital care to ‘life on the outside’. Essentially stroke survivors are abandoned and often feel desperate. It’s as though they have fallen off the edge of the world. Funding is needed to maintain contact and to provide ‘on request’ help with therapy. Because stroke survivors have lost something of themselves with the carpet bombing of their brains, they need help in adapting to the new person they’ve become; they are not useless, they are unique. This adjustment is difficult for everyone, but the answer is not to ignore and discard but to encourage and support.

Has anything particularly surprised you about what you have heard?
I’m astonished by the resilience of many stroke survivors. When you hear the story of a patient who was locked in for two years, then slowly started to come out of that state, and ten years later is talking and driving his own motorized wheelchair there is reason to marvel. It is then that you know for sure that recovery never ends. Perhaps, though, the biggest surprise is the silence around stroke. Why are we so afraid to face the challenge it presents?

What have been some of the highs of the tour?
The enthusiasm and compassion of young health professionals I met was inspirational. Therapy is shifting and becoming more patient focussed. I was also delighted to discover how receptive health professionals were to hearing about my experience. I was surprised by the large attendance in each hospital. I learned that new treatments, such as endovascular thrombectomy and rapid stroke-care delivery, could dramatically improve patient outcomes worldwide. But meeting other stroke survivors and hearing their stories was the highlight.

What has been the feedback from people who have heard you speak?
Very positive. The thanks I received from Donna Hastings, the CEO of the Heart and Stroke Foundation in Alberta, NWT, and Nunavit, is a good example: “Ron is insightful about stroke and inspirational to stroke survivors, caregivers, volunteers and all those who work in this space.”

What steps do you take now to prevent stroke? 
I take my medications faithfully, eat well, and exercise regularly. I continue to follow my passions: writing, reading and editing. I try to keep a positive attitude; life is good! Oh, and I expect further recovery.

What would you say to other people to make them take stroke prevention seriously?
Norman Doidge in The Brain That Changes Itself suggests the most difficult challenge a human being can face is recovering from a stroke, because a part of you dies. I concur; I had no idea what mental and physical damage a stroke could do. Stroke is to be avoided!

What is your reason for preventing strokes?
Your life changes, but more significantly, life changes for everyone around you. Stroke is the leading cause of disability. You might not be able to return to work and play as you knew it; you might lose your independence; you might not be able to express yourself. In North America, someone dies from a stroke every four minutes. Stroke is a nasty business.


www.defiantmindjournal.blogspot.com

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