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Archive for December, 2013

My Life After Stroke

My Stroke Recovery Journey – An Interview with Dr. David Butler-Jones ‘Canada’s Top Doctor’

DavidButlerJonesDr. David Butler-Jones, Canada’s top doctor, is recovering from a stroke that hit him a year ago. While he is the process of stepping down from his role as Chief Public Health Officer of Canada, Dr. Butler-Jones has no intention of stopping his rehabilitation. In fact he is helping others by spreading the word that there is life after stroke. Dr. Butler-Jones was kind enough to take some time off from his hectic schedule to talk to SRABC Communications Committee Volunteer Christine Baudry.

What was your first thought when you were told you had suffered a stroke?

The first thing was just curiosity … what’s happening?  Why is it happening?  What does this mean?  Then I was worried because my dad’s career ended, and my dad’s stroke was actually less than mine. It affected his short-term memory to a point where he had to leave the government. He was a consulting engineer. That was the end of his career at 52 or 53. Even though my dad had his first stroke in his early 50s, I really didn’t think it would be a stroke that would alter my career.

This was my worry, because I also had short-term memory loss … I wasn’t ready to be done yet. I still have all these plans and all these things to do with the agency and public health. Just the prospect of not being able to do that was that was my biggest question.

What challenges did you face and how did you overcome them?

There are just so many.  For some people like me it basically shatters your world in the sense of you can’t remember the conversation you just had. You can’t remember what you just read. You can’t both read and listen to somebody at the same time.

Initially it was a process of learning. I had hemiparesis but I wasn’t hemiplegic. In other words, I could move my left side. I could walk slowly and climb stairs slowly. I couldn’t do two steps. If I closed my eyes, I’d fall over. I had some left side neglects. I’d be bumping into things.  My real focus was, “Okay, what do I need to do to get back?”

I also didn’t realize what hard work thinking was. I never had to worry about that. School was easy. Intellectually, everything came easy.  Suddenly, everything was hard work. My wife, Glenda, would say – just to let you know, you’ve already asked me that three times. I had no clue. It’s not like, “Oh, I have a vague memory.” It’s like there’s nothing there. It’s gone.

What was your therapy like?

A lot of my therapy work was relearning the names of things. I do crossword puzzles and word finds and all kinds of different things to rebuild vocabulary.  That was the challenge. I had a tremendous therapy team. Once I got into the system, I had great rehab specialists – physio, and speech and some really talented people. Basically, when my dad had his stroke, it was “Well, sorry. Good luck to you.” There are still elements of that in the system.

I had a great neurologist. He said, “Your brain is like a computer – it tries to access different sectors when your hard drive is being corrupted. It’s not that it’s not there. You just can’t get at it. At the same time they swap out your quad-core three gigahertz processor, put it in a single core on a hundred megahertz processor. You can still do stuff but it will take you longer … and heaven help you if you try to run a program in the background!

The system is getting better but we’re not really well geared to the kind of rehab and support that will actually help people.   The system is not geared for that.  Stroke and brain injury … because it’s so complex, because everybody is so different, it’s an area that we really need to focus more on because there’s huge potential out there.   We’ve got a way to go … we need to be talking about this, not in a complaining way.  It can be better and it wouldn’t take much to make it a lot better.

I’ve made tremendous progress. Quite honestly, without them, I’d still be on the couch. Unfortunately, I think people slip through the cracks sometimes – especially if it’s a minor stroke.

How did it affect your work?

I have stepped down but I’m still helping out. For anybody who’s had a stroke it can be a huge challenge. Fortunately, I grew up with a positive attitude – that whatever cards you’re dealt, you play them as best as you can. I certainly saw that in patients, the ones that I journeyed with … when people get to that point, it’s really amazing.

How do you deal with it?  I’ve been extremely fortunate. It could have been a lot worse – it would be nice if it was better! Again, because of having such a public stroke, people come up to me and tell me their stories or that of a family or friend. I found that very helpful … I don’t know how helpful I was to them. Certainly, they were helpful to me. You’re not alone in this!

As for your strongest supporter and caregiver, who would say that would be?

That would be my wife. What is important is that you have people that you care about and that care about you. It doesn’t matter what age, male or female, those who are well connected have less risk of dying than those that aren’t. Again, that’s having a support network whether it’s coworkers, family or friends.  People that care about you but that you also care about have a tremendous impact … even if you’re poor- you’re going to have good health.

If there’s a message you could send others who are recovering from a stroke, what would you say to them?

It will always take a lot longer than you want or hope. Never give up hope and never stop trying. You have to balance expectations. The key thing is that we are likely to get what we expect. If we expect good things, we won’t always get them but we’re more likely to get them. We’re more likely to achieve them. If we expect we’re not going to do any better, there’s a good chance that is as good as we’re going to get.

Early on I read the John Carter series by Edgar Rice Burroughs.  His attitude was, “There’s still hope. I’m not dead yet.” I held on to that. I must say I’m so fortunate to have made the progress that I’ve made and to have the life that I have. We’ll see where it takes me. It’s not where I planned, but I still have an opportunity to contribute. Even those with a greater disability than mine; their relationships, the wisdom that they bring – we all have something to offer.  Just be open and humble about it.

Are there any ways in which your life is better now?

How is my life better? That’s a good question. I probably have a bit more patience with myself. I always had a lot of patience with others but not so much for myself. It has forced me to re-examine who I am. I still get frustrated … that sense of loss, but with tremendous gratitude at the same time.

There are things that clearly I don’t do as well. Then there are a few other things that I actually do better. I can actually see patterns and things better than I could. That’s partly because of the kinds of therapies that I’ve been doing. I’m also more intentional – because I have short term memory challenges, I actually pay attention to things differently because if I don’t, I won’t remember.   I create associations either with other memories or if it’s numbers … I put them on a clock so I visualize a time not just numbers and a whole bunch of other little tricks that seem to have gotten more ingrained. I’m getting quicker at it. That can’t be a bad thing!

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Introducing SRABC’s 2013-2014 Board of Directors

Casey Crawford – PresidentSRABC-LogoIcon-Colour

Atul Gadhia – Vice-President

Ryan Sahota – Treasurer

Alex Cheong – Secretary

Mary Joan Giffin – Director (Interior Region)

Greg McKinstry – Director (Vancouver Region)

Ben Sullivan – Director (Vancouver Island Region)

Victoria Yang – Director

Julie Wei – Director

Angela Wright – Director

Dr. John Millar – Director

Angela, Ben, Greg and Mary Joan are stroke survivors and Ben, Greg and Mary Joan are regular attenders at an SRABC Branch.

Biographies of SRABC’s Board of Directors are now on our website at:

http://strokerecoverybc.ca/about-us/our-board-of-directors/

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Book Review: Stroke of Hope by Heather Branscombe

Creating the program you need to discover the results you want

heather branscombe headshot2Heather Branscombe is a physiotherapist with over 15 years’ experience and is the Clinic Director and Owner at Abilities Neurological Rehabilitation which has offices in Abbotsford, Chilliwack and Surrey. She is also a member of SRABC’s Professional Advisory Committee.

The message in her book Stroke of Hope is simple and yet encouraging: there is HOPE after a stroke! The book is designed to help stroke survivors to take control of their physical rehabilitation and improve their quality of life after a stroke.

She uses a unique analogy that compares stroke recovery with preparing a meal and goes on to describe a step-by-step plan to create an individualised therapy program. Some of the key points covered are:

  • Why it can be difficult and exactly how to make it easier
  • The one thing you should incorporate to make sure you are always improving
  • How to know if your therapy program is working for you
  • How to easily fit therapy into daily life
  • When and who to call for help

The discussion of muscle tone gets a little technical in places but overall Stroke of Hope is written in plain language and helps to break down the process of stroke recovery into small steps. The focus is primarily on physical recovery – those looking for insights into communication, perceptual, cognitive or other problems will need to look elsewhere.  Stroke of Hope is an excellent resource which will be of value to stroke survivors, caregivers, rehabilitation professionals and anyone else interested in the details of stroke recovery.

You can contact Heather at abilitiesrehab@gmail.com

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My Life After Stroke

Duncan Holmes – Delta Branch Poet Laureate

Duncan Holmes with plant

Duncan Holes has a positive outlook on life. He is a stroke survivor who attends the SRABC Delta Branch and has been adopted as their ‘Poet Laureate’. He is also a cartoonist whose work is published regularly, a food writer and a keen gardener. “I bake bread every Saturday morning, have taken up sketching since stroke, and gardening is a big part of my life- not to mention going four times a week to the gym. There IS life after stroke!” he says cheerfully. Duncan was named one of the winners of the Farmers Appreciation Week Poetry Contest held by the BC Association of Farmers’ Markets. “I was totally delighted especially because I live in South Delta which is such an agricultural centre of action. I think we are blessed here with what we have got, so we have to look after it. Agriculture is the heart of what this part of the Lower Mainland is all about.” Here’s Duncan’s winning poem:

A FARMER’S ODE TO SPRING!

Creep on, season of green,

And warm the stagnant ground with springtime blessing.

Banish winter’s brown,

Bathe cold soil with warm;

And with your power, wrench from it life.

Touch still forms that through cold winter lay dormant

But even in suspension knew that your warm hand

Would clutch all frigid shapes, and wring from them new life

That they would grow again,

Be blessed again by ageless sun

That in warming glory would shine again.

 

Here in the cold and grey we wait.

With impatient tractors, cold barns, bags of seed,

Things and places wrapped in farmland mystery,

Precious moments, us in solitude,

Waiting for winter cold and bleak to go,

For numbing winds to disappear into a past where all the winters go;

Wrapped with all the seasons in brown and rotting leaves,

Fallow fields and flying snow.

Ah, the streams of memories

Seasons mixed and mellowed in time’s unrushing fashion,

As we wait for springtime soon to come

When in the sunshine we will walk and work together.

Warm together,

On this, our precious land.

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The Phyllis Delaney Life after Stroke Awards

Stroke Recovery Association of BC was founded in 1976. Phyllis Delaney was entrusted with organizing a provincial association by absorbing stroke recovery groups that had been operating in British Columbia since 1969. She was our first Provincial Coordinator and went on to work tirelessly on behalf for stroke survivors in BC. The Phyllis Delaney Life After Stroke Awards are given to people whose courage, determination and achievement deserves public recognition, as a testament to Phyllis’s achievements.

They recognise individuals who have overcome adversity following a stroke, and caregivers who have provided support to those affected by stroke. There are 4 award categories. The 2013 awards went to:

Greg Mckinstry

Greg Mckinstry

Outstanding Achievement Award Joint Winners

Greg McKinstry – Shaughnessy Branch

David Baker – Maple Ridge Branch

Caregivers Award Winner

Marilyn Simpson -Delta Branch

Award for Achievement in the Arts or Sport Winner

Eugene Wilson-Shaughnessy Branch

Volunteer of the Year Award Winner

Diana Abbott-Peninsula Branch

Dave Baker

Dave Baker

 

Marilyn Simpson

Marilyn Simpson  

 

Eugene Wilson

Eugene Wilson

 

Lyall Copeland accepted the award on Diana Abbott’s behalf

Lyall Copeland accepted the award on Diana Abbott’s behalf

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Community Stroke Recovery Education Days Project Summary

By Wendy Johnstone, Project Team Leaderwendy

The main question facing stroke survivors and caregivers after discharge from hospital is– “now what?”  Not knowing where to go for help in the community, not knowing what is available and not knowing how to access programs is tremendously confusing and frustrating.  Stroke survivors and family caregivers need relevant education and practical guidance on living life after stroke – from how to get through life one-handed and how to help a family member who can no longer speak to how to get the most from appointments with family doctors and specialists.

The Community Stroke Recovery Education Days project reached over 150 individuals affected by stroke, including stroke survivors, family caregivers and health care professionals.  The Stroke Recovery Association of BC (SRABC) held four educational events in four different communities. Additionally, SRABC piloted the use of two webinars for stroke survivors and family caregivers in the Northern region of BC.

One of the most important sources of knowledge about how to cope with life after stroke is from stroke survivors themselves. Each education event began with an inspiring and moving personal story by a community member living with stroke.  These speakers talked candidly about how a stroke turned their lives upside down; physically, emotionally and mentally, and yet each story conveyed a message of hope, strength and optimism; inspiring others to continue moving forward in their own recovery.

A group of highly skilled professionals including occupational therapists, physiotherapists, kinesiologist, recreation therapists, a gerontologist and speech language pathologist gave engaging and practical presentations on living life after stroke.  Appendix A provides a list of presentations given in each community.

Attendance

  • 2/3 of stroke survivors attending the events had their stroke within the last two years.
  • The range in age of participants was as young as 20 all the way to 92 years old.  The average age was 67 years old.
  • Caregivers attending the events were more likely to be women
  • Events held in larger cities had a higher attendance than in the smaller communities.

Key Findings

  • Stories of stroke recovery are a powerful message as evidenced by 22 awareness raising media hits, which provided coverage of the events.
  • 75% of all participants described the education events as uplifting with organized and knowledgeable presenters.
  • Over half of participants felt an increased awareness on stroke recovery.
  • Over 30% of participants listed SRABC as one of the most important resources in their long term recovery.

Recommendations

  • SRABC needs to find ways of continuing and building upon the ground-breaking work of this pilot project by seeking funds to deliver further educational services including:
      • Discussion and analysis with key stakeholders, including the SRABC Professional Advisory Committee, in order to create a strategic plan for continuing to deliver this educational service throughout BC.
      • Research and identification of foundations, provincial and federal government departments, individuals and agencies that can be approached with proposals for continuation of this community health promotion and educational initiative.
      •  Development of proposals to secure ongoing support and funding.
  • Continue to explore a variety of mediums to delivery education including community events, videos and the use of web-based platforms.
  • Develop and deliver additional “Guides to Recovering from a Stroke” based on participant feedback.
  • Continue to provide “Guides to Recovering from a Stroke” in languages other than English and to look for further opportunities to have key information translated.
  • Conduct an analysis of education needs and learning styles of younger stroke survivors and offer targeted educational activities.
  • Continue to promote the key messages of stroke recovery:
      • There is life after stroke and for most, there is the opportunity for continued recovery
      • Stroke survivors and caregivers need tools, information, knowledge and practical ideas which promote stroke recovery for all phases of community reintegration
      • Stroke survivors who have recovered are vital role models for fellow survivors

To read the full final report please visit: http://strokerecoverybc.ca/about-us/current-projects

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