How I found the key to unpick locked-in syndrome

  • 22 June 2011
  • From the section Health
Kate Allatt and family
Image caption Kate and Mark renewed their wedding vows just over a year after the stroke that left her unable to move and wanting to end her own life

When Kate Allatt woke up and saw it was 10 minutes to three in the afternoon, she worried about who was picking the kids up from school.

Then she wondered why there was a tube connected to her mouth.

And then, in state of panic and pain, she discovered she could not move a muscle.

"The only thing was my eyelids - I cried tears, but no noise."

Kate, now 40, had been in a medically induced coma for three days. The tube was attached to a life-support machine, and her lack of movement was the result of one of life's most terrifying conditions: locked-in syndrome.

After suffering a stroke, she was left cognitively sound - fully aware of what was going on around her - but no longer had the ability to move any part of her body.

"Everything hurt. The thing with locked-in syndrome is you have all the symptoms of paralysis, but all the pain of feeling everything."

She could not see how her life could possibly continue. To make matters worse, those around did not at first realise she was mentally aware.

"I wanted a pillow over the head. I hated it.

"My life was nothing like it was, and I was going to be for ever an observer in my kids' life. I just wanted to be put out of my misery."

Another migraine

Her ordeal started with a fairly innocuous headache complaint just weeks before.

Mark, a husband fed-up with his wife's complaints of constant migraines, took Kate to see a doctor.

Upon arrival, the clues about the seriousness of Kate's condition were starting to become apparent - symptoms that would eventually lead to a massive stroke caused by a blood clot to her brain stem.

"As he parked the car, I checked into the nurse and started slurring. She immediately sent me to A&E.

Image caption Before suffering from the stroke, Kate was a keen runner - and hopes to run again

"They sent me home with the migraine pills and then five hours later from resting in my bed, I went downstairs - I said to my husband, 'What's happening to me?', of which he heard gobbledygook.

"And then I collapsed on the floor."

Until her stroke, Kate ran her own digital marketing company, and was gearing up for a once-in-a-lifetime trip to climb Mount Kilimanjaro.

Doctors now said the mother-of-three, a keen runner, had a 50-50 chance of surviving.

Even if she did make it through, she had little chance of regaining any part of her life.

Yet soon the first breakthrough came - thanks to husband Mark and best friend Alison.

"A week after my stroke, they were conscious I was very bored. They wanted me to watch some TV.

"They put something on and I blinked very ferociously as if to say 'I don't want to watch this'.

"Then, they asked me a question that required a yes/no answer, i.e one blink no, two blinks yes."

By week eight, Kate had another glimmer of hope.

"I got a tiny flicker - less than half a millimetre - in my right thumb."

'Say my name!'

Other than her eyelids, it was the first movement of any kind Kate had experienced since her stroke.

But she didn't let it excite her too much - after all, unknown to her, Mark had been told she would almost certainly never walk again.

But as Kate's movement slowly came back to her, she found she was able to write, and began using Facebook to communicate with her friends and the wider world.

To be able to communicate again by using the internet was liberating, and soon, egged on by her son Woody and in defiance of all medical assessments of her condition, Kate regained the ability to speak.

Image caption Kate was completely aware of what was going on around her - but at first doctors did not know

"I was in the middle of writing some words down for him to read because I couldn't talk.

"He said to me 'Mummy, don't write my name, say my name. Say my name'!"

"I just said, 'Oody!' It was an incredible moment for them because they all cried. They went away, I practised all weekend in the way I did with all my exercises."

Her weekend of speech practice paid off, to the delight of her favourite nurse, Oliver.

"On Monday morning Oliver came into my room with a box.

"He said, 'Morning Kate!', and I shouted back, 'Morning Oliver!' - not as clear as that, but nevertheless it was there. He dropped his box, he cried, and he said, 'It's moments like this I came into nursing for'."

Walking away

Kate's relationship with Oliver strengthened, and she confided in him that she intended to walk her way out of the ward that had been her home for so many weeks.

Not only that, she told him that a year on from her stroke, she wanted to be able to do again what she had always loved - running.

"He rolled his eyes as if to say, 'Of course you will Kate, yeah right, whatever'.

"On 29 September, I walked off the ward. On 6 Feburary this year, a year after my stroke, I ran 20 metres. They're both on YouTube."

After leaving hospital, she and husband Mark decided to renew their wedding vows in front of more than 200 family members and friends.

"I cried like a baby coming down the aisle."

Now, never shy of a challenge, Kate wants to run a full mile by Christmas.

Her friends, never wavering in their support, have nominated her to be a torch-bearer for London 2012 in her home city of Sheffield - an experience that even the old Kate would never have even dreamed of.

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