Hi, my name is Priscilla and I am 38.
When I was 17 on 10th of July 1997 at 12.30 am I awoke to a massive lightning pain shooting through the right side of my head. I could not speak, or move my left side of my body. My Mum came into my room as I started to vomit and she managed to sit me up on the edge of the bed. She looked at my face, realised the left side had dropped and stated ‘if I didn’t know any better I would say you’ve had a stroke.’
From there I was incognito. The next part of my story is told by my mum:
When the ambulance arrived, the paramedics were convinced I'd had a drug overdose. My Mum told the paramedics my symptoms and they proceeded to try and help me to stand for 10 minutes. My Mum suggested that I had suffered a stroke (my Mum used to be a nurse and my grandmother had suffered a stroke) but she was told a number of times that I was too young to have a stroke.
On arriving at my local A&E at 1am after the paramedics tried to get me to stand and walk, I was given a blood test to determine what drugs I had taken. My Mum was very distressed and upset by this as they were trying to force me to take paracetamol even though my Mum had told them that I couldn’t speak or swallow!
I was left all night on a ward until 11.30am the next day when a doctor came to see my Mum. The blood test for any drugs or alcohol had returned negative at which point a scan was done. Following the scan I was sent to a hospital better equipped to deal with my condition. I was given a more in-depth scan, an angiogram and a lumbar puncture, after which I was told I had suffered a massive stroke and the main artery in the right side of my neck had been crushed like a straw. They said it would have taken 3 days for the blood to drain from the clot in my brain (something which could have been prevented if the ambulance staff hadn’t insisted I was too young to have a stroke!)
The myth needs to stop that stroke only happen to old people – that goes for both paramedics and doctors.
I was then told by a neurologist that I would ‘hopefully’ be sent to a rehabilitation centre but it was unlikely I would ever walk again as there had been no improvement in my condition over 48 hours. Again, what hadn’t been taken in to account was that I had youth on my side.
I had to wait 6 weeks for a space in rehabilitation centre. In the meantime I received no physio therapy and my speech was very weak. My left arm and leg had no feeling or movement and no stroke charity or support system came and spoke to me. I was 17, and I was very scared.
When I eventually arrived at the rehabilitation centre it was immediately obvious that I was the youngest person in the building by quite a margin. I was place on a little four-bed ward with senior ladies ranging from 60 to 80 years old, some with very serious illnesses like MS and some on oxygen machines. I was told I would start physiotherapy and speech therapy and would see an occupational therapist soon.
I sat in my bed for 4 days with no one to speak to or to let off steam to, everyone was a lot older and very sick. No visitors were allowed in the centre after 5pm because the other patients needed rest, but my friends didn’t finish work until 5pm and so weren’t able to visit.
I didn’t start physiotherapy for 3 weeks as there were no therapists available. I saw a speech therapist and occupational therapist once a week, but aside from that I was offered no information or support on life after stroke. I was scared and alone and so sure there had to be answers out there but I hadn’t heard anything.
I was in rehab for nearly 12 months with no one telling me what the consequences of having a stroke at such a young age would do to my future. Unfortunately, my experiences said to me: if you’re old and you have a stroke at an old age they leave you to it, which is so wrong in itself, but if you are young, certainly in my case, receiving no information or help and no hope of finding out how this disability will affect you is not right.
When I left Barnes a year later I was left to pick up the pieces of my very changed life. I am 38 now and thankfully I can walk slowly (I will not be running a marathon!) but only a year after I had the stroke I was told that the headaches I suffer daily are a common consequence, as is the memory loss, the starting sentences and not being able to finish them, the pain in my leg and shoulder, my hand and bowel problems, as well as my anxiety and panic attacks and balance issues. Only now do I understand that all of the issues I suffer are side effects of stroke.
The way a stroke affects a young person and an older person is completely different. I am aware that 20 years have passed since my stroke and a lot has changed, but I think support for young stroke survivors still needs to be a primary focus. In my opinion, more needs to be done for younger stroke victims (the way rehabilitation is handled doesn’t just affect your physical being but is also a big strain on your mental health) to help show them how a stroke will affect their future. There is a full life ahead of a young person who suffers a stroke. It’s already a life changing disability filled with fears and change, which is only made worse when there are no clear answers as to what may lie ahead.