“I had to mourn my own death.
Now, with help from people like you, I am trying to rebuild my life.”
I was only 35, in love, and enjoying my career in the PSNI. In fact, I had just received a community policing award! My boyfriend and I had just bought our ‘forever home’ and I thought my life was perfect.
And then, without warning, I had a stroke. My life as I knew it ended.
On Easter Monday last year, I suddenly felt very unwell and was rushed to hospital. I told my sister I thought I was having a stroke. In fact, there in A&E, I suffered a massive brainstem stroke and 3 TIAs (mini strokes), leaving me completely paralysed apart from my eyes.
When I woke up from surgery, I had ‘locked-in syndrome’ and was given a 50/50 chance of survival.
I am asking for you to make a donation now because someone in Northern Ireland has a stroke every 3 hours.
And a quarter of them are ‘Young Stroke’, that’s people under the age of 65. People just like me.
For three long months I was fully alert but totally unable to move or speak. The only thing I could do was blink. It was terrifying. I remember everything from that first moment I woke up in the intensive care unit at the Royal Victoria Hospital, Belfast. I couldn’t move a muscle but inside I was screaming “I’m here!” But nobody could hear me.
I could see the distress of my family and partner Adrian, and I wanted to reassure them, but I was a prisoner in my own body.
Locked-in syndrome is a neurological disorder that affects particular parts of the brain. The person is paralysed apart from the muscles which control eye movement.
There is no cure or standard course of treatment for the condition.
Being robbed of my ability to communicate was so frightening. Imagine wanting to tell people you’re too hot, you’ve an itchy nose. That you love them so much. That you are so incredibly grateful for all their care and support. But you can’t move and you can’t speak.
It took me months to learn to communicate again. It started with Adrian and I working out a system of blinking – one blink for yes, two blinks for no, three blinks for I love you and four blinks for you’re a moron!
Progress was gradual and frustrating, but we went from blinks to spelling out everything on an eye gaze board. Then it became a struggle to getting words out, hoping with every breath I’d be understood.
I know I am lucky. The prognosis for those with locked-in syndrome is poor and the majority of people do not recover. In fact only one in ten survive the initial stroke. Of those that survive very few regain speech or movement. I have to a degree, but haven’t yet got back full movement in my right arm. I still have a long way to go.
The person who I was is still inside me, but I have had to accept that I’ll never be that person again. I have had to let go of her.
But now, with the help of NICHS and people like you, I will rebuild a new life.
A person is lost to Young Stroke every week in Northern Ireland. That’s fathers, mothers, husbands, wives, brothers, sisters, children. Too many loved ones lost to stroke.
For those of us who survive, it is a real challenge to regain as much movement and communication as possible. We have particular needs in order to rebuild our lives, and it has a devastating impact on our family, friends and future plans. Because stroke is often seen as an older person’s condition, it really can be very isolating.
And that is why the services NICHS provides for Young Stroke are so crucial.
NICHS’s Stroke Care Services include Stroke Family Support which focuses on helping the family in the early days while the stroke survivor is supported by the Health Service. What I have found particularly helpful is NICHS’s Young Stroke Activity Group in my hometown of Magherafelt and the PREP Programme (Post Rehabilitation Exercise Programme). Not only has this impacted on my recovery, but it has let me meet other people like me. It is such a blessing to know I am not alone.
Last year, the doctors fought to save my life.
This year, I’m fighting to rebuild it.
NICHS urgently needs funds to keep these services going, and to ensure they are available across Northern Ireland.
For three months I couldn’t speak or move. In the months that followed it has taken so much hard work and determination from me, but also unceasing support and love from my family and friends to get me to this point. With their support and the expertise and services of doctors, nurses and NICHS, I have gradually learnt to talk and walk again, and learn some of the basic things we all take for granted. But I still need help.
I am determined to get movement back in my right arm. It will take time, hard work and help. I really want to be able to write replies to all the wonderful letters of support I have been receiving, and this inspires me to learn to write with my left hand. I would also love to be able to once again play the piano!
I am currently participating in NICHS’s PREP Service, where for 12 weeks I am taking part in intensive, specialist physio and receiving lots of helpful information and advice. I know from others, this course has transformed their lives and recovery.
It is only because of the generosity of NICHS’s supporters and donations made to an appeal last year that there is now a PREP Programme in my home town. For me this has made all the difference.
But NICHS urgently needs funds to continue and grow services across Northern Ireland. Please donate now to help a Young Stroke Survivor.
I have learned to do many things with just one arm. I have also learned to swim with one arm and not go round in circles and just recently I did a sky dive! But I want to do more. I want to work as hard as I can to get the movement in my right arm back. Thanks to the generosity of NICHS’s donors, I just might.
Please will you support a Young Stroke Survivor today and donate now by making a donation to NICHS’s Stroke Care Fund?
Young Stroke Survivor