Brilliant CP Awareness Month, on the Scope Social Event for March

KW2023

I just want to say thank you to Richard Luke and Abdi Gas, from Scope for arranging 3 brilliant speakers for the online Scope Social evening, on Wednesday, to celebrate CP Awareness Month

First we heard from Dr Sonali Shah about her research projects, exploring CP and womens sexual health and reproductive health and experiences, living with CP across the life course, and maternity RIghts and CHoices for women with CP. Then we heard from Dr Ruth Bailey, who talked about her life and achievements and her work as a lecturer with Open University. Both ladies have CP, and it was great to hear their presentation and learn about their work.

Next we heard about Adult Annual Reviews from Rajkumar Rajan, senior Bobath tutor and physiotherapist at the National Bobath Cerebral Palsy Centre. Raj, as he is known to those of us who attend the Bobath Adult meet ups online, talked about how Bobath think all adults with CP should have an Annual Review, despite the NICE guidelines saying only adults with Cerebral Palsy GMFC 4 and 5 should have an annual review.

Unfortunately, we know that very few adults actually have an annual review. This is something we would like to see changed.

Raj went on to explain things such as Scoliosis development. I have certainly made a conscious effort not to ‘slouch’ to my left, since this. He also talked about how we often mistake weakened muscles for increased spasticity. This was definitely a light bulb moment for me because my legs have felt very stiff lately. This has made it very difficult to walk, even a few steps. After listening to Raj I realised that my legs are not stiffer, my muscles are weaker and by walking less (because its getting hard to walk) Im making it worse because the muscles will get weaker through lack of use. The muscle weakness will make it feel like the legs are stiffer. This of course also applies to other parts of our bodies, such as arms, hands, neck and back.

We are all told ‘CP is non progressive’. The initial damage caused to the brain is non progressive. In reality, the physiological stress on the skeletal body and early aging, are inevitable and being aware of this is important in order to be able to do what we can to delay it. Without the knowledge, we are of the mindset – ‘my condition is non progressive and I don’t need to exercise’, or ‘Im too old for exercise to help me now’.

On the face of it, the information we saw in Dr Sonali’s presentation and the points raised by Raj, could be quite depressing. However, information is power – now I know whats happening, I will at least, try, to do something about it. By doing some strengthening of the appropriate muscles, I should see some improvement and be able to turn my ‘decline ‘ around – even if the improvement is small. I left the meeting feeling positive and empowered.

Thanks again to Richard, Abdi and Giovanni for organising a great, informative event. 

I am really looking forward to the CP Network meeting next Wednesday (10th April), where I hope to learn what to do about my decline, from Sam James. I know Sam is an expert in this field, and she will be very interesting.