The stories of stroke survivors are what drives our fight at the World Stroke Organization to achieve our goal of a world free from stroke. Welcome to our stroke survivor stories series, which we'll pop up on the blog every Thursday, you may wish to contribute to this poignant narrative of stroke globally. Please contact Sarah.Belson@stroke.org.uk
Where were you when you had your
stroke?
I was in the
hospital, I was having a medical procedure and I was 27 years old. I remember
talking to the doctor ahead of time who said I had a less than 1% chance of
having a stroke. A massive bleed was caused. When I
awoke I was having headaches, dizziness and vomiting. After discharge I went
for another appointment at a different hospital and I was not able to sit up
and had severe pain. I was taken to the emergency room. I was told my symptoms
were because I was nervous. Nurses fought for me but I was sent home and it
was considered symptomatic – ‘you’re young, you’re fine’.
Could you access hospital?
I went to two
further emergency rooms before I got admitted, which was only actually because
I was dehydrated. This was three days after the initial procedure. The
neurologist on call said I was fine, but the doctor insisted on doing a CT scan.
They saw that I had had a stroke and the extent of the bleed. I was discharged
home after a week. I was not referred to the adjacent rehabilitation unit.
What expectations did you have for
your treatment, rehabilitation, recovery?
I was told I
would have speech therapy, physical therapy and occupational therapy. I was
informed that I wouldn’t have these people coming to my home, but as I had
parents, they would need to take me to therapy five times a week. I thought I
would have a discharge plan or case manager to help with my recovery but I
didn’t get anything. I was a young independent woman and suddenly boom, my life
changed.
What was your experience of treatment
and/or rehabilitation?
I had to raise
the questions, this might have been because I am a nurse so knew what
questions needed to be answered. I had to discover for myself what my
rehabilitation should look like. If I needed equipment I was advised to look in the catalogue that I had been given to see what would work for me. I am not sure what happened in my
case – whether I fell through the cracks.
What has helped you in your recovery?
I had a lot
of friends who were nurses and they were trying to find out what support I
could have. I went to a support group but they were at different points in
their life. Friends and the practical support they offered about financial
support, and which therapists would be a good idea, really helped me.
What have been/are your fears?
Not knowing
what to expect and initially being told that I would be fine, but how I work,
think and go out socially is very different now.
How did your family and friends feel
and respond?
I did
experience people disappearing because they did not know what to say and do. My
parents have been fantastic. My two brothers along with my parents were supportive. I always knew they were in my corner by either calling or visiting me. It's amazing what a boost a call can make.Friends who I had not been so close to just
stepped up and were amazing. I was very lucky, I had a strong support system.There
was always a call or letter when I most needed it, and that was key.
What has inspired you to be involved in stroke support?
What has inspired you to be involved in stroke support?
When I was
thinking about going back to work as a nurse, I was really conflicted, how
could I go back into a system that I think failed me? And I realised it was my
opportunity to connect the two worlds of patient and medical system. Then I
heard about Amy Edmunds and YoungStroke and I saw what my role was. This has
helped me be a better person and a nurse. You need to be your own advocate –
and have someone with you.
How have you got involved in the World Stroke Campaign?
I was fortunate enough to be invited to participate in an advocacy workshop at the World Stroke Congress in India in 2016. This was my first real taste of stroke advocacy. It was absolutely fascinating to hear how stroke is treated differently across the globe. Before the workshop I had so many different ideas about how to change and improve the care around stroke. Some realistic, some not so realistic. The workshop taught me how to fine tune these ideas and has provided me with detailed guidance that would help me along each step of the advocacy process. Hopefully I'll see some realistic results! I'm currently working to create an event in California to celebrate World Stroke Day in October. In particular we are focusing on young stroke survivors and the changing face of stroke.
Read more about Kara's story in her book: https://www.amazon.com/But-You-Look-So-Normal/dp/1457520753
You can also find her on Facebook: @ButYouLookSoNormal and Instagram: but_you_look_so_normal
How have you got involved in the World Stroke Campaign?
I was fortunate enough to be invited to participate in an advocacy workshop at the World Stroke Congress in India in 2016. This was my first real taste of stroke advocacy. It was absolutely fascinating to hear how stroke is treated differently across the globe. Before the workshop I had so many different ideas about how to change and improve the care around stroke. Some realistic, some not so realistic. The workshop taught me how to fine tune these ideas and has provided me with detailed guidance that would help me along each step of the advocacy process. Hopefully I'll see some realistic results! I'm currently working to create an event in California to celebrate World Stroke Day in October. In particular we are focusing on young stroke survivors and the changing face of stroke.
Read more about Kara's story in her book: https://www.amazon.com/But-You-Look-So-Normal/dp/1457520753
You can also find her on Facebook: @ButYouLookSoNormal and Instagram: but_you_look_so_normal
Find out more about YoungStroke at http://youngstroke.org/
