Where were you when you had your stroke?
I was visiting relatives in Kent with my family. My stroke occurred at a very young age, shortly before my 3rd birthday so I don’t remember anything about what happened.
Could you access hospital?
My Mum, a nurse, realised that something was wrong and took me to the nearest GP in Kent, then to the local hospital. From there I was taken by ambulance to Guy’s Hospital in London.
What expectations did you have for your treatment, rehabilitation, recovery?
Very few. I think everyone hoped the treatment and rehabilitation would minimise the effect of the stroke on my life although as I had to grow and develop there were lots of unknowns.
What was your experience of treatment and/or rehabilitation?
The NHS treatment was excellent throughout my childhood. I was seen by paediatric doctors and had regular physiotherapy to help with the walking difficulties and dystonia I suffered. There have been many challenges as the approach was to monitor and wait and see how my body developed and react with medications and treatments along the way. When I reached adulthood and moved around the country more I did find it more difficult to access treatment and to have continuity of care, but now have an excellent orthopaedic surgeon who monitors my progress and has operated on me to alleviate arthritic pain caused by my right sided weakness, dystonia and uneven gait.
What has helped you in your recovery?
My family who have been there from the beginning and took me to so many hospital appointments when I was young. As my stroke occurred so early in life I haven’t known any different so it’s a case of working out ways to overcome challenges rather than thinking how I did things before the stroke and how to do them after.
What have been/are your fears?
When I was young I feared being different and not able to do the same things as my friends. As I’ve gotten older the worries have mainly been focused on whether I can live independently and just how the wear and tear on my body because of the after affects of my stroke impact my day-to-day life. There is a lot of uncertainty and new health issues crop up because I’ve lived with right sided muscle weakness and dystonia for so long.
How did your family and friends feel and respond?
Naturally there have been anxieties along the way but on the whole I don’t feel I’ve been treated any differently. We have all had to adapt but 35 years on from my stroke it has shaped who I am but does not define me.
