Sunday, October 3, 2010

Thriver’s Stories

I have been surprised to learn over the past few years how many different kinds of strokes there are, and how many ways a stroke can cause devastation. Surprising too are the brave and ingenious ways in which stroke thriver's have managed to overcome their loss and adjust to their "new norm". I hope you will share with us your story of change.


I recently met Donna Brown when she volunteered to help with peer support at Rumsey Neuro Rehab (TRI). Her story is an amazing one of bravery and determination. She greatly inspires me. She lost her speech 10 years ago and was told she many never speak again. As many stroke patients do with pessimistic 'one person fits all' advice, Donna was determined to prove her doctors wrong, and did she ever! Sometimes her speech falters and she gets frustrated, but her quick brain is ever finding circuitous routes to say what she needs to say. And the courage she displays to attempt conversation in such a verbal format as a peer support group is truly amazing. Donna says that she overcomes awkwardness in new situations, like approaching a sales clerk at a store, by saying: "I've had a stroke", so the clerk can understand that she may need more time or a different way to get her point across. She also gives speeches! Apparently she finds speaking much easier if she reads prepared lines. Donna is a bit worried about introducing herself when she runs her own group, so we are experimenting with index cards and poster boards. What we are not doing is imagining, even for a moment, that she can't do it. Here is her story.

LOOKING FORWARD                            October 2010
Donna Brown

First, some general background on who I am.
I have been married for many, many, many years.  My husband and I have a 24 year old son.  I grew up in Montreal, and moved to Toronto in 1976.  My father was a referee in the NHL and my mother always had a positive attitude on life and taught me the value of humor.
I spent most of my career in the Cosmetics industry and then as a
Marketing and PR consultant.

My Stroke
In 1993 I had the first of three operations for a pituitary tumor.  During the third operation in 2000, things did not go well.  Not all
of the tumor could be removed.  One of my optic nerves broke,
and I had a stroke.
After the operation, I knew something was seriously wrong with
me.  I did not know who I was, or where I was. 
I could not speak, write or read.  I had aphasia.
I could not find the simplest words to communicate my thoughts
or feelings to my family.
I was devastated.
I felt very isolated and vulnerable.  My ability to count and do
basic math had gone too.  AND, I also had permanent double vision.
At 46, my life had profoundly changed.
Just for a moment, please think what it would be like, if you were suddenly not able to express your ideas or emotions for even a day.
What do you think that would feel like?  Imagine what that
could do to your self esteem.
After my stoke I had lots to worry about.
How much of my abilities would I recover?  What would my
future professional and personal life be like?
These questions were full of hope and fear.

My Recovery
I know that every person’s life has some bad experiences,
some worse than mine.  But, bad experiences don’t mean a
bad life.  I believe it is up to me, to be a victim of those bad
experiences, or, to rise above them.  It is my choice…to
look forward, not backward!
After my stroke, I worked very hard on adapting and growing.
I joined the Aphasia Institute to be with other stroke survivors –
who were committed to living life.
I took classes in conversation, art and math.  And, eventually,
public speaking (Gavel Club).  I got a speech pathologist for
weekly lessons.  And, I tried and learned things all over again.

My Life
So, I decided to define myself by what I could do and not by
what I couldn’t.
I started volunteering at Toronto Rehab, Princess Margaret
Hospital and the Aphasia Institute.  I go to classes at University
of Toronto (Adult Lecture Series).  I went to CARD, to ride horses.

And finally, some words of great wisdom from my mother,
“learn to laugh at yourself”, especially when you are trying new
things, when you are outside your comfort zone.  Enjoy the
experience of living by leading with your “heart” and not your

Thank you for reading my story.  Many people and experiences
helped me with my speaking, writing and reading.  After almost
10 years, I am still making progress.

My life is DIFFERENT that before my stroke.  But, I am enjoying
life “everyday”.

                                           RANDY SWANSON

It was the May long weekend of 2002.  I was a 45 year old father of two and thought I had a pretty good life.  I did not smoke, drink heavily or even drink coffee.  When I was not working at my very successful career in finance, coaching my son in baseball or taking my daughter to soccer I ran.  I completed 6 marathons and even tried my hand at the Iron Man races.  All of that changed on that Sunday morning in May.  It was my son’s confirmation so we were having a family gathering.  I did not sleep well the night before and felt something was wrong.  When I got up to make the coffee that morning I had the worst head ache I had ever experienced.  The next thing I knew I was on the floor and could not speak.  It was my 10 year old daughter who did not panic and called 911.  Her mother and brother were so scared that they could not move but she told the operator that she thought her dad was having a stroke.  Fortunately we lived less than 10 minutes from Trillium Health Centre.  I spent many months in hospital learning to walk and talk again.  It was a very difficult struggle as I was told I would not walk again.  I walked out of the hospital.
My stroke was difficult for the whole family as I was a very involved father and the sole bread winner for the family. My income had allowed my wife to not only stay at home but she was able to finish her education.  We I was well she returned to school finishing her undergraduate degree, a Master’s degree and then a PHD.  My children attended private schools.  As a result of my communication struggles and the decline in the financial markets my earning power changed dramatically.  My wife could not cope and left me.  
Despite all of these challenges I was able to continue to work, drive and send my son to the University of Evansville in Indiana. My daughter came and lived with me and I once again began to exercise.  I could no longer run so I began to bike.  At first it was on stationary bikes in spin class but it was not long before I was out on the road.  I trained for over a year and signed up to do the Ride to Conquer Cancer.  It was a two day ride from Toronto to Niagara Falls.  I had raised lots of money and was excited that my son and two work colleages were riding with me.  The first day was a challenge but great.  I was one hour from the finish line on day two when a woman coming down the hill ran into me.  I was thrown from the bike and hit my head.  I woke three weeks later in hospital with a broken orbital bone and two broken wrists.  It was back to square one.  I need to learn to walk and talk once again.  This time the walking came more quickly but  my speech is not yet back to were it was before the accident and I can not yet  read or write.  I know I will get there again with the help of the Toronto Rehab Hospital and Trillium Health Services I will be back.



The man who couldn't stop drawing

Jon Sarkin was working as a chiropractor when a stroke changed him. Suddenly, he was self-absorbed, rude and fighting a compulsive desire to create art:

Aug 9/2011

Read Abdul Kamal's heart warming story of recovery from aphasia:


"It's been a long journey, but I believe I can beat aphasia by continuing to challenge
my brain."

"After I had the stroke, a speech therapist told me that I would show improvements over the next year and a half. However, at 75, I'm still learning. My speech, comprehension of spoken language and syntax are still improving, albeit slowly. The message is that  if you can challenge the brain, it will respond."

Dr. Abdul N. Kamal-Retired professor of physics
Aug 24/2011 

Over the next few days I'll post exerpts from Dr. Jill Bolte Taylor's excellent website My Stroke of Insight: Peace is Just  a Thought Away.

* the views of this author are not necessarily those of this blogger.

Aug 25

Watch Jill Bolre Taylor's Ted talk


Who says there isn't a life after stroke?

News News News on the homefront! We are working with Sony Pictures and Imagine Entertainment on the creation of a feature film adaptation of My Stroke of Insight. Screenwriter Semi Chellas is busy working on the screenplay and Ron Howard will be the director. Jodie Foster is interested in playing the role of me and I am hoping that that will work out. Who will play GG remains a mystery. How exciting!

From Dr, Jill Bolte Taylor's website:

From Dr, Jill Bolte Taylor's website:

Aug 29/2011

More from Dr. Jill Bolte Taylor

Recommendations for Recovery: Forty Things I Need the Most.

Nov 28/2011

From Amazon:
Everyone who cherishes the gift of language will cherish Diane Ackerman's narrative masterpiece, an exquisitely written love story and medical miracle story, one that combines science, inspiration, wisdom and heart. One day Ackerman's husband, Paul West, an exceptionally gifted wordsmith and intellectual, suffered a terrible stroke. When he regained awareness he was afflicted with aphasia-loss of language-and could utter only a single syllable: mem.A" The standard therapies yielded little result but frustration. Ackerman soon found, however, that by harnessing their deep knowledge of each other and her scientific understanding of language and the brain she could guide West back to the world of words. This triumphant book is both a humane and revealing addition to the medical literature on stroke and aphasia and an exquisitely written love story.

Jan 10/2012

“When Words Failed Him”- an inspiring story


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