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| Kate Allatt A Rocky Stroke Recovery |
My recent radio interview at the British Science Festival 2012 in Aberdeen with ABC Radio Australia can be found here. Be inspired!
Transcript
Robyn Williams: One of the most startling figures at the British Science Festival was Kate Allatt, startling because only two years ago she was ‘locked-in’, seemingly in a vegetative state. Now she is running free, as she puts it. The problem started with a headache.
Kate Allatt: I had a headache for two weeks, busy mum. Well, I ignored the headache, but when I finally went to hospital complaining of a headache I was sent home with a ‘stress-induced migraine’ and some Co-Codamol. Six hours later I collapsed.
Robyn Williams: Then what happened?
Kate Allatt: I was put in a coma for three days to rest my brain. When I woke from the coma nothing could move, I felt everything, I was hooked up to machines that I now know were life-support machines because I couldn’t breathe myself, do anything for myself, move anything. Fear, total fear.
Robyn Williams: And did you get any feeling as to what was actually happening to you? Did you hear the doctors speak or did you hear your family speak?
Kate Allatt: Of course, I heard everything, I understood everything. If my head was positioned in the right way I could see who was visiting me and get upset, tears would roll down, but no noise would come out. Doctors were appalling. The nurses were better on the whole. But I was in ICU, I was with people who were critically ill like myself, and some people didn’t make it, and when they didn’t make it and they died, listening to the relatives’ reactions, for someone who’s never heard or seen a dead person it was pretty horrific.
Robyn Williams: So, here you were, locked-in. Did you have the feeling that you were going to be locked-in permanently?
Kate Allatt: Absolutely. For the first 16 weeks I wanted a pillow over my head, I wanted out. I used to run 70 miles a week, hence the name of the first book, Running Free, but I also have three kids, I participated in everything they did. The idea of not doing anything and just observing life from a wheelchair, dribbling…who’d want that?
Robyn Williams: So that went on for all that time. What made the difference? How did they spot that you were still there inside?
Kate Allatt: Well, it was when my friends used to visit me and my head was positioned towards the door, and when they’d come I’d get very emotional. People like me suffer with emotional lability, I have now discovered. But I’d cry uncontrollably, and they then knew that I was inside, understanding everything. It was the only way I could communicate I was all okay inside, I was still the same. And then they smuggled in their own letter board, one blink for no, two blinks for yes.
Robyn Williams: And so you could spell out what you were actually thinking.
Kate Allatt: Absolutely. You know, it was like a cava bottle erupting inside of me. The first time in two and a half weeks I was able to communicate how I felt, and the first word I spelt out…well, the first letter was S, I went from A (one blink), all the way to S (two blinks), from A all the way to L (two blinks), and then E (two blinks). And my friend guessed ‘sleep’ and I blinked twice, and she said, ‘What, can’t sleep?’ And I blinked twice, and she said, ‘At night?’ and I blinked twice. And for the first time in two and a half weeks I was given sleeping pills because I couldn’t sleep at night at all and it was horrible.
Robyn Williams: What did you find out and when did you find out what was actually wrong with you?
Kate Allatt: Oh, I didn’t find out for three weeks I’d had a stroke, and I thought that happens to old people. Of course I’ve not had a stroke. I didn’t know what had happened to me. But I suppose the defining moment for me in my recovery was week 16, I had a review in rehab, I’d gone to rehab after nine weeks, and the rehab review meeting was me, my family, my friends, my therapist, my doctors, my neurologist.
And my neurologist opened the meeting, while I was dribbling in a wheelchair with a head rest, and he said, ‘Morning everybody, I have nothing more to add.’ And around the table all my therapists said the same thing, while I was in the meeting, and then shortly after they’d said that, the conversation went on to my long-term care in a nursing home. I’ve got three kids at home, all under the age of 11, and I had to be taken out of the meeting in total tears, devastated. My friend and my mum were there, and the thing I spelt out…they let me spell out because they could see how upset I was, was, ‘Stand by me.’
Robyn Williams: You had had a stroke in the brain stem, different from being on the brain itself because it kind of cuts the main cord that keeps your body going, so it must have been partial, in other words it wasn’t a complete cut, otherwise you’d have had no chance of moving or anything.
Kate Allatt: Well, you say that, but I went to University College London two months ago and they re-MRI-scanned my brain to see why it is I’m able to move every part of my body and not have any disability at all in that respect. And when they scanned my brain they revealed the whole of my right side was more than three-quarters obliterated by a blood clot, and they couldn’t believe that I had full movement in my whole body. So my brain has remapped, it has rerouted. You know, without being crude, if I go to the loo now I have to spend half an hour there just to think about going because it takes that long to activate my bladder to release itself. So my brain is rerouted and reworked and rejigged, but it has done it. I wanted it big time, I was obsessive, and I had a point to prove; I was written off, so I wanted to show everybody they were wrong.
Robyn Williams: You’re saying that many people who have got this seemingly hopeless syndrome can in fact reactivate their central nervous system, as you have. It’s a tall order, isn’t it?
Kate Allatt: Well, you know what, it isn’t. I’ve discovered a book by Norman Doidge, The Brain That Changes Itself, and years ago he wrote it about neuro-plasticity and how the brain is actually plastic, and it’s not hardwired like we all thought, and it can adapt. Sometimes it needs external stimulus, sometimes on top of that it needs the person to actually will and want it and practice moving, like I did, every single hour of every day on my own on my bed. And you can actually re-educate the brain to do things with slightly different parts of the brain. And he’s written a whole book of it, and I didn’t know about it until early this year when I was finishing my second book, and what he wrote in science terms I’ve done innately without realising.
Robyn Williams: Yes, in fact his book is very well-known and it’s been on the bestseller list for at least three years, he is a Canadian I think, and he’s been to Australia many times. But, you see, there are some people whose brains frankly have been devastated, and the chances of their coming out are very, very low indeed. So telling the difference between people like yourself who have managed to bounce back and those, frankly, who’ve got no chance, telling the difference is going to be crucial.
Kate Allatt: Sadly that’s probably a bit of a difficult situation to be in, given that your brainstem is your control box for your whole body with all your movements. However, as serious as my locked-in, they don’t have total annihilation of the brainstem. There’s a good section of it that has been annihilated, as is in my case, and my point is always this; doctors are right to say to patients’ families, you know, this is the level of the injury, it’s fairly desperate, you might not drink, you might not walk, you might not talk or swallow, however there are cases where we can’t explain but they have gone on to do that.
And I’m not just one, there are many people like…probably haven’t done as well as me, but people are recovering. And the point with stroke is you never stop recovering. You might recover at a slower rate, and you certainly won’t recover to how you were before, I’m not, I’m not running anymore 70 miles a week for a start, but the point is everybody can recover after stroke to a certain extent, and you’ve got to want to do it and you’ve got to work with it and you’ve got to try hard, and you’ve got to work hard, it’s hard work.
Robyn Williams: You’re going to ride a bike from Birmingham to London, are you?
Kate Allatt: Yes, along the Grand Union Canal, because I’m not very good with taking my hands off the handlebars…
Robyn Williams: I can imagine. What can you do now and what can’t you do?
Kate Allatt: Well, I used to love my running because it was a time when my girlfriends and I would go out and chat every Saturday morning and it was really therapeutic for me to run in the hills, fell running, in Derbyshire, in the Peak District. I can’t do that, it was very important, which is why I’m looking at cycling now. Yes, I have very slow reactions, I’m very clumsy. I get tired easily. I’ve not stopped talking…I didn’t talk for six and a half months, so I figure I’m making up for it!
Robyn Williams: You certainly are. Thank you very much, and good luck with the recovery.
Kate Allatt: Thanks a lot for having me.
Robyn Williams: The incredible Kate Allatt, who introduced a showing of the film The Diving Bell and the Butterfly, all about locked-in syndrome, at the British Science Festival.
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