So the past few weeks have been intense. I met with the wonderful Emma from York University who is completing her Phd in Sociology, I believe, and is studying how Cerebral Palsy affects us in later life. As someone who, herself has CP she is interested in how the condition affects adults at different stages in their lives, finally this conversation is happening and something that people and society are starting to have and it is wonderful to see and hear. She is still accepting candidates so feel free to download the research advert and get in touch with her.
I have started following @cptruths, a young man who is bringing life with cerebral palsy to the forefront of social media and is addressing topics such as sex and disability
Open your camera and follow the Qr code to see Joseph Bird's awesome instagram page! He is bridging the gap between Cerebral Palsy, influencer and activist for products that help those with a disability. His confidence is infectious!
The next thing that I have come across is the action cerebral palsy covenant. There is such a discrepancy in care. It is only through my own journey that I am discovering that under the NICE guidelines (updated 2019) as an adult with Cerebral Palsy I have the right to be referred to a multidisciplinary team for help and support with my condition. It is something that I have never been made aware of despite meeting with many types of consultants and specialists.
It is such a lottery (postcode lottery) if you will on how you are treated and how you are supported. Make sure that you educate yourself on the NICE guidelines for both adults and children with cerebral palsy - all are available online or in my links
Adults guidance
under25s guidance
Lastly something that is close to my heart. My daughter who is 7 has been asking a lot of questions about my disability and what my childhood was like and to be honest I have struggled to answer some of her questions. A good friend suggested Rosie Jones childrens book "Edie Eckhart" and we have laughed all the way through the book and it has jogged some of my memories of being a child with a disability and it has opened up conversations we may normally not have had, Heartily recommend it if you have cerebral palsy and a parent or for your pre teen to read.
I have also started an intense physiotherapy treatment with my new neurophysiotherapist and boy she is making me work hard but I am hoping that it will all pay off.
We have had two poorly girls this week, thankfully it does not seem to be Covid (negative pcrs and lfts) despite symptoms but we have kept them home and hopefully tomorrow they will both be back at school so that I can reclaim some of my week! We have a lot of things to look forward to the next month, my husband's birthday and mothers day and I am taking my eldest to the theatre with a friend so a lot to look forward to.
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