Stroke Survivor

In May 2006 I suddenly realized that my brain had stopped working properly. I was 35 years old. No matter how hard I tried, suddenly the things I used to so easily find in there took me ages, and even then, there was no guarantee that I’d find what I was looking for. I tried reading emails but they didn’t make sense. I would read the same sentence over and over again but I couldn’t remember the beginning of them. I couldn’t sequence words very well in order to make my own sentences and would lose track of conversations right in the middle of them. And numbers made no sense at all …. I lost the ability to add up in my head. I had a First Class Honours degree in Mathematics and Education, but I couldn’t add up single digits. I had lost some sensation in my hands, and the right side of my mouth and face felt like I had just returned from the dentist. I was constantly off-balance, grabbing on to things to lean on, convinced we were having one small earthquake after another.

Diagnosed with “stress” I started working part-time, but was constantly exhausted. Determined to get my brain working again I tried and tried to read something longer than a paragraph but was always disappointed. I didn’t feel like I was getting any better at all but as any doctors I met with insisted there was nothing physically wrong with me, I tried to live a normal life as much as possible. But I knew something wasn’t right. One evening in July 2006, I collapsed and lay there paralysed, just staring. Despite being able to understand the panic going on around me, I was unable to respond to reassure people I was still there, in my head. I recovered within hours but was discharged without an adequate diagnosis. More exhaustion followed. Accompanied by extreme sensitivity to noise, smell, and movement. And a strange inability to be patient when hungry. Add to all this to the inability to do my work, which I loved and had always defined myself by, and it was no surprise that depression soon joined all the other symptoms. I was not the most pleasant person to be around!

Soon I realized that whatever was going on in my head, was the result of some kind of brain injury so, in the absence of medical care from a professional, I started treating myself for a head injury. This involved following three simple rules: no alcohol, no stress, and lots and lots of sleep. And by stress, this meant nothing that would put my brain under any stress at all—noise, people, strong smells, information, disagreements—it was difficult for people around me to cope and they did need to tiptoe round me quite a bit. I was ready for bed by 7pm and slept until ten in the morning but often needed to lie down in the daytime too. I had found out that in trying to use your brain after suffering a brain injury then you’re likely to cause more damage—a bit like asking a tennis player to play with a broken arm—so by following these three simple things I was allowing my brain to rest.

Slowly but surely, some abilities returned. Six months after the initial episode, I was able to read a book again; eight months later, numbers started to make more sense. I managed to stay awake until 11pm for my best friend’s fiftieth birthday celebrations. It seemed like I was on the mend, and while I was still much slower than I had been before, I was feeling better. Until 29th April, 2007, when I suddenly started speaking gobbledeegook. People started asking me if I was OK but nonsense words kept coming out. I had a sense that what I had said sounded strange and that people were looking at me a bit funny but I couldn’t find the words in my head to express this. Then I lost all sensation in one arm and a friend recognized that I was having a stroke. He drove me to the nearest hospital where, yet again, the doctors refused to believe that there was anything physically wrong with me, saying that I was too young for a stroke and that it was all in my head. The paralysis passed within an hour but I was left exhausted for weeks.

I realized that unless I got adequate medical attention I was probably going to die. I researched stroke specialists all over the world and asked if they would see me. One doctor in Canada wrote back, saying that I probably had a PFO (patent foramen ovale, a kind of hole in the heart) through which blood clots were passing and making their way to the brain (paradoxical emboli). That man was Dr David Spence, Director of the Stroke Prevention & Atherosclerosis Research Centre in London, Ontario. After starting warfarin, my then-husband and I flew to Canada, where a rather large hole was found to be opening on every heartbeat. Dr Spence found loss of function and sensitivity mainly on the right side of my body, specifically my eye, face, wrist, and ankle. He diagnosed me with left parietal lobe, posterior left temporal lobe, and frontal lobe damage and told me that some of the cognitive skills I had lost could come back but there was no guarantee. What we should focus on was the prevention of further strokes by closing the PFO. So I travelled to the UK to have surgery for a titanium implant to be placed inside my heart, about which, I have to say, I felt nothing but relief. I had been living with the effects of brain damage for 15 months—having a diagnosis at last was actually a joy!

As for my recovery from the cognitive damage (as opposed to my recovery from the surgery, which is another story in itself!), I got my sense of balance back (and those high heels came straight back out of the cupboard!) and while I don’t think I’ll ever have that quick mathematical skill again, that’s what calculators are for, right? I still struggle if I don’t get enough sleep, but I am back on the red wine and very much able to socialize again. I found that I was unable to return to my busy office, but also found that I didn’t really want to. I set up a lovely quiet office at home, overlooking the garden and with two soppy spaniels keeping me company. My reading skills came back, although I still find academic books a bit of a challenge, and often forget what I’ve read …. but that’s OK because it means I read books over and over again with the same joy! And I started writing again, and giving seminars and speeches! These things now give me even more happiness than they used to because I truly believed I would never write another book or give another speech again.

I learnt many things about brain damage through this experience. We don’t realize how fragile the brain is (even slight bumps to the head can cause all sorts of problems) but likewise, we don’t realize how much the brain can recover. Even if you’ve been given the all-clear after having a car accident, taking some time to shut your brain down for a week or so (no stress, no alcohol, lots of sleep) can help prevent problems that may not become apparent until a few months later.

Strokes do not just happen to old people! They can happen to people of any age, both genders, fit or unfit, and even if they eat healthily. You can have a stroke and not realize it (a silent stroke) and physical paralysis is not necessarily permanent (TIA, or transient ischemic attack). But a stroke is only a symptom of something else, it is not a disease in itself. If you have a runny nose you don’t treat the nose, you treat the thing that caused the runny nose. A stroke is the same ….. you have to find out what caused it and treat that or you can pretty much guarantee that you’ll have another. Strokes are usually caused by a blocked artery or bleeding in the brain, and there are lots of things that can contribute to those conditions (including a hole in the heart which is a lot more common than you’d think!). Dr Spence is the author of a life-saving book that details all the different causes, symptoms, preventative measures, and treatments of stroke. “How To Prevent Your Stroke” is published by Vanderbilt University Press, 2006 (ISBN 0-8265-1537-1), and claims to “reduce stroke by as much as 75 percent in high-risk people”. It is very reader-friendly and not too academic at all, and I strongly urge everyone to have a copy of this in your homes—Dr Spence truly is a lifesaver.

And for anyone dealing with a loved one struggling with the effects of brain damage, from a stroke or any other cause, please be patient. Your friend or family member has lost parts of who they used to be, and are absolutely terrified inside. It can be very easy for stroke victims to give up and give in to their new limitations, whether physical or mental, and depression and anger can easily take over. They know they are being difficult, but sometimes being difficult is the only way to express the frustration at being unable to do the things they used to do so easily. It is the love and support of people around them, just like you, that can help give them the determination to transition from stroke victim to stroke survivor.

Dr Spence’s book http://www.imaging.robarts.ca/SPARC/Books-Dr-David-Spence

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