Tuesday, 1 October 2013

Things I have learnt about having cerebral palsy

October 2nd is world cerebral palsy day. I think this is a great initiative, cerebral palsy is the biggest cause of childhood physical disability. It affects more 17 million people worldwide. Yet, despite it being such a common condition, I feel that there's a lot of common misconceptions about cerebral palsy, and I think it's quite misunderstood among the public. As a young woman with cerebral palsy I feel that it's an endless learning curve. I am always learning new things about this condition and how to cope with it. 
(some general pointers about cerebral palsy (source - world cerebral palsy day)

Today I want to share with you some of the things I've learned about having cerebral palsy, just to show you the complexities of this condition, and to help others understand it better. 

  • Cerebral palsy is non progressive, but the physical symptoms of this condition aren't static. I have spastic cerebral palsy which means my muscles are affected by spasticity, this makes them tight and can cause contractures and joint deformities. Sometimes my muscles are less tight than normal, depending on my treatment regimen. A good example of this is when I have botox injections, these temporarily make my muscles less spastic and tight which means that my pain is lessened and physio is easier to do. The key thing here is that although treatments help me manage my symptoms better and improve my quality of life, they don't give me an increased level of functioning, my impairments remain.
  • Cerebral palsy isn't just a childhood condition. Now you're probably thinking 'well obviously, there's no cure for CP.', but in my experience with healthcare, it's clear that it is viewed by many healthcare professionals as a childhood condition. I think this is because growth spurts present big problems for managing CP - in CP muscles grow slower than bones which creates complex problems. I think many medics (and parents and patients) believe that once a child finishes puberty the effects of CP will remain more or less the same and so no more treatment is required. In my experience, this wasn't case. I was discharged from my consultant aged 17, I was told I could stop wearing splints, physio was no longer necessary. Lo and behold, aged 20, I was back under the care of a consultant, my muscles had shortened to the extent that I needed four surgeries to eliminate contractures and I have accepted that I will need splints and stretches for life to try and manage my CP. Of course, what makes this difficult is that healthcare for adult CP patients is sparse. I currently see a paedatric consultant due to the lack of adult CP specialists.  
  • Everyone is affected differently. I really cannot emphasise this enough. In the past couple of years, I've spoke to a lot of people with cerebral palsy through the Hemihelp (twitter @hemihelp) charity, having previously never known or spoken to anyone with cerebral palsy before. In August, a few of us met up in London and the biggest thing I took from it is how varying our hemiplegia (my type of CP) was. I'd always just assumed that everyone with hemiplegia had the same functional abilities and limitations. So I'd say that be cautious about making assumptions about how someone with cerebral palsy is affected and remember that our lived experiences of this condition will be different. Cerebral palsy is caused by brain damage, and the brain is one of the most complex things in the universe, so it kinda makes sense that CP will vary widely. 
  • The non-physical symptoms are just as important. Cerebral palsy is primarily a physical condition - it's physical effects on movement, function and posture are apparent and often very visible. However, CP very often comes with non-physical, invisible symptoms which often get overlooked. For me, I have visual perception issues which mean I cannot go unfamiliar places on my own as I cannot visualise the route I need to take. In school, I struggled with certain bits of maths which was incredibly distressing. For me, it was only as an adult that I realised that these were caused by my CP (thanks to the wonderful Hemihelp). However, these things have just as much impact on my daily living as my physical problems. I also have considerable fatigue and pain because of my CP, that makes it very difficult to function. 
  • Never understimate the importance of a support network. It's only as an adult that I've realised the importance of the support my family and partner provide. It enables me to do just about everything I do. I've also found talking to others with my condition invaluable, because it reassures me that I'm not alone, others understand what I'm going through, and can give me advice. 
  • Cerebral palsy doesn't define me. I am not just my cerebral palsy diagnosis, I am a person in my own right. I can still have similar ambitions as others my own age. For me, the past three years have been spent going through surgery and other treatments, I've had to put my life on hold that I sort of felt cerebral palsy was dominating my life. I've come to accept that there will be times where CP makes my life tricky, and it can be a headache trying to figure out how to manage it and get on with life, but it's important to remember it's not all that I am. 
These are just some of the lessons I've learnt about cerebral palsy in the past year or so. Feel free to tweet me (@thisisamy_) if you have any questions. 

1 comment:

  1. The ratio of affected people by cerebral palsy is really shocking. We should try to reduce it's causes for the health and safety of our coming generation.
    physical therapy Bergen County