Within just days of my stroke, my Dad had gone in to overdrive – reading everything he could find on brainstem strokes and locked-in-syndrome. He was not willing to accept the prognosis given to me by the medical team.
Dad soon came across a young woman in the UK who had suffered a brainstem stroke in February 2010. She too had found herself locked-in and been told by medical staff that there was no hope of any level of a meaningful recovery. At the time of my stroke she had, against all expectations, largely recovered.
Kate Allatt loved to run. Very fit young Mums don’t have strokes … do they? Sadly they most certainly do. And after ‘discovering’ Kate, my family realised that recovery was possible.
My Dad contacted Kate Allatt. He had found hope, and he was not going to let it go.
Here is an excerpt from the email he sent her:
“Kate….I hope I can address you by your first name. My name is John Frew and my daughter Stephanie Cousins, who is pictured below with her husband and four children, suffered an almost identical injury to yours three weeks ago today. We live in Australia. Steph was riding her pushbike with the whole family[all with helmets on] and fell off the bike. As a result she suffered a ruptured artery in the neck which then led to clots to the major arteries to the brain and a massive brainstem stroke. She is in intensive care in Canberra hospital in Australia and is in a “Locked In” state.
As you would be aware from your own experience the family and friends are all in shock but have all rallied around. Christmas was very difficult with our Steph struggling for life but she now appears past the critical stage but what confronts her now is something that you are well aware of.
Most of us have read a book by Dr. Norman Doidge ” the Brain that Changes Itself” and of course most of the family have already read your book and some are finishing it. We have even started to read it to Steph hoping that your experience and determination will inspire Steph to achieve a similar outcome to yours.
I know that you are probably inundated with mail and calls for help. However when I read your book I was truly inspired and thought what a wonderful story to tell to our Steph to help inspire her to fight and to ensure she is returned to her wonderful family.
We would love to hear from you with any words of wisdom and also would ask if we could communicate with you now and then to seek your advice, views or just to get an injection of enthusiasm as Steph travels the very difficult road that you have done so recently.
Luckily for us, Kate is a passionate advocate for young stroke sufferers and extremely generous with her time. Within 2 days she had returned my Dad’s email. She organised a Skype meeting with my family and put Dad in touch with a guy in Perth who had also recovered from Locked-In-Syndrome (more about Pete Coghlan later).
Within a few days, my family had met Kate on Skype. They spent a couple of hours one Saturday morning (7th January) picking Kate’s brain. Kate gave my family plenty of information. She told them about early therapies we should push for. She was also willing to answer the ongoing myriads of questions my family ‘threw’ at her.
On the 9th January, my Dad sent the following email to Kate:
“Kate….Many thanks for your time on Saturday morning. We are sorry that we took up so much of your time but we are hungry for knowledge so we can maximise our assistance to Steph and talking with you and hearing of your personal experience was just fantastic for us but arms us with more fortitude to keep the battle going.
We spoke to Steph about our discussion and she is keen to have a talk with you although obviously it will be pretty much one way. Once we can set it up with the hospital we will get back to you and make a mutual time.
We will be back in touch in the not too distant future.
Within a couple of days, I met Kate via skype, from Canberra Hospital. I found it so hard to fathom that this bubbly, energetic, ‘normal’ looking woman in front of me, just 2 years earlier had been where I was now. Kate gave me a great pep talk and made me realise that she had experienced all the same feelings as me. That her now animated body had felt like dead weight, completely disconnected from her brain.
I now had living proof that Locked-In-Syndrome could be beaten. Kate Allatt was no longer just the main character in a book I was reading. She was a living, breathing woman. Beating this was going to take incredibly hard work, and some luck, but it was possible.
So my family and I adopted Kate’s catch-cry: