I was born in 1971, and my life took a turn right from the start. I was diagnosed with meningitis, but fortunately, the hospital in London that treated me knew what it was and saved my life. However, just a few weeks later, I became severely ill again. My head was swollen, and I found myself leaning to one side. I was rushed back to London, where they diagnosed me with post meningitis hydrocephalus and treated me with a VP shunt.
In my early years, I had to undergo several brain operations to revise the VP shunt that had been fitted when I was born. The situation seemed to improve, but when I was in my mid-20s, I had another operation due to a malfunction. The surgeon decided to replace the shunt and this worked for 24 years until it had to be changed in 2018. Now, aged 52, I have an adjustable shunt called a Miethke Hydrocephalus shunt fitted to the old one, which helps relieve discomfort and drain excess fluid.
My diagnosis has had a significant impact on my life. I now face daily fatigue, memory issues, and concentration problems. My surgeon has helped me find ways to manage these symptoms, but I had to give up paid work due to the hours and memory issues. Nevertheless, I still live my life and try to make the most of each day, albeit at a slower pace.
The Brain & Spine Foundation has been a great support system for me, providing me with online resources and advice. I am also incredibly grateful for my family’s support and understanding. They know exactly what to do if anything happens, and that brings me immense peace of mind.
If I could offer any advice to someone starting their journey with a neurological condition, it would be to be patient with themselves and others. Processing information can be challenging, so try breaking things down into bite-sized chunks. Don’t lose your temper, and try to be understanding, empathetic, and caring. After all, we are still human.
My neurosurgeon, has been an inspiration to me. He is calm, engaging, and understanding, with a great sense of humour and a genuine concern for his patients. I firmly believe that people in my situation or similar are still part of society and can still make a positive impact by volunteering, meeting people, and helping others. We are still human, and we still have feelings and emotions.
Thank you for reading,
Sharing your story helps drive positive change for people affected by neurological conditions. We like to share the experiences of real people who are using, fundraising or volunteering for our services to help raise awareness of neurological conditions.
There are many ways to share your story with us – in written format, as a video recording or an audio recording, we even have people share their story through artwork. It’s up to you which you most feel comfortable with.
To share your story, get in touch with us. We’d love to hear from you.