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Lessons from a stroke: David Butler-Jones reflects

Dr. David Butler-Jones

Brigitte Bouvier/The Globe and Mail

The health of David Butler Jones, Canada's first chief public health officer, has become a public teaching moment. In May last year, the 59-year-old suffered a stroke. Though a doctor himself, he initially failed to recognize the symptoms and thought he could sleep off the discomfort. More than 50,000 Canadians suffer from stroke each year, more women than men, according to the Heart and Stroke Foundation. As he points out, it's best to heed any unusual symptoms, and consult a professional rather than self-diagnosing. I had profiled Butler Jones in 2009 at the height of the H1N1 scare. He spoke to me again from Ottawa, seven months after his stroke.

How are you?

I'm coming along. The strength on both sides is equal now. And my short-term memory seems to be pretty much resolved. What is still improving is building stamina and the kind of multitasking that you need to do: You're reading something while you're listening to something else while you're watching something else. I'm still not there yet.

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As Canada's public-health officer, I imagine you didn't expect to be using your own health issues as public information.

When people hear the word "stroke," they think the worst and that it's the end. There is a lot to accommodate and a lot of frustration, but our conceptions and understandings have changed and improved about strokes. We learn more and more about the brain and its capacity to recover and relearn. I had to relearn how to walk backward and how to turn around. My short-term memory was affected, too. So I could be having a conversation and 10 minutes later, I would have no recall of what the conversation was. I also had to relearn the names of my four grandchildren.

Are you back at work full-time now?

No. In the summer, I tried starting back to work. But it was impossible. I couldn't focus at work and focus on my rehabilitation at the same time. As my rehabilitation therapist said, "If you stay at work, you are going to jeopardize your progress."

That must be hard for you. You strike me as someone who loves to work.

Oh, it's terrible. But my job right now is to get better. I really want to come back fully and do the job so long as the Prime Minister and others feel I'm the one to do it.

The stroke happened while you were at work, right?

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I was on a conference call when it first started. I had this visual aura, and I thought, "Oh, am I having a retinal detachment?" But no, both eyes were affected. And then I was just exhausted and so I went home and lay on the couch for the afternoon. And I thought, "Well, maybe I'm getting a migraine." I have a history of migraines but not with visual aura. And then that evening, I had a bit of difficulty swallowing. I went to sleep, still exhausted, and when I woke up, I discovered I was walking funny. I realized there was something wrong. So I had a colleague do a quick neuro test and sure enough, I was definitely weaker on the left side.

Don't you find it ironic that many doctors attempt to self-diagnose and fail?

I've always intellectually understood that's why you don't treat your own family. You don't treat yourself. But it's irresistible to try to understand what's going on.

Why do you think you failed to recognize the signs of your stroke?

My stroke was in the right side of the brain so I had some left-side weakness, but I wasn't paying attention to that side. It was only when I tried things that I recognized, "Oh, I can't step up on that side any more." And because I am a physician and the left side of my brain was still good, my intellectual function was still good. I super-analyze everything and try to diagnose, and basically I should have let others figure it out. Part of the education [about strokes] is to encourage people to observe things – even if the person who is ill says, "I'm fine." That's certainly my first reaction. I don't want to bother people at emergency departments. And I thought, "Maybe if I slept it off, it will go away." Well, that's probably not the best thing to do.

Don't you wish you had gone to the emergency department earlier? It's well known that getting treatment as soon as possible for strokes helps minimize the damage.

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I'm not sure if going earlier would have made much difference for my case. It wasn't a massive stroke in that I wasn't paralyzed. I didn't have any facial droop. I don't want to second-guess any of that.

When we spoke the last time, you mentioned that your 34-year marriage had ended in divorce. Were you alone when you suffered the stroke?

No, I am in a new relationship. We have been together for four years now. And Glenda has been tremendously supportive and helpful.

I also remember that you described the stressful demands of your job and that you were in the process of losing weight. Do you feel the stress was a factor in your stroke?

My blood pressure was fairly under control. But I had high cholesterol and a bad family history [of heart attack and stroke]. What this has taught me is that "pretty good" control of blood pressure is not "good enough." And the same about diet. Clearly, there's an association between being stressed and stroke and high blood pressure. The job was an impossible job with the travel and the time and everything else, so one of the other positive things is that we will be structured in an even better way to ensure that my job is doable. That's the lesson for all of us. I'm not the only one in a high-stress position. We have to pay attention to our bodies.

Tell me about the therapy and the tricks you have learned to help the brain recover.

I didn't know I couldn't walk backward because why would I bother doing that? The brain is kind of lazy in a way. If it can take a short cut, it will. My therapist got me in the habit of writing things down. For the first little while, I wasn't able to drive, but once I was able to, and I would go to the grocery store to pick things up, I would write them down. But you don't look at the list initially so you can see if you can remember everything. And then before you leave, you check the list, just reinforcing it.And I do crosswords and Suduko and other word games.

And if you found you were incapable of coming back, what would you do?

We'll cross that bridge when we come to it. As I said, the stroke doesn't seem to have affected my judgment or intelligence or my practical skills. I'm not done yet.

Still, this health scare must have made you contemplate your mortality, which is never easy.

Ah, I've had to do that several times in my life. I thought I was done with that. I wasn't sure I would make it out of childhood. Between my asthma and, it turns out, some immune deficiencies, I'd thought I'd had enough. But I guess not. I had a family doctor once who was lovely, and who said to me, "If you were a car, you would have been recalled long ago." It's one of those things. I don't like to pay attention to myself, but I have to.

This interview has been condensed and edited.

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