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?
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
