Most people may assume that cerebral palsy is a physical disability but it is actually related to the brain sending out the wrong messages to muscles all over the body. In my case, this came about as I suffered hypoxia to the brain when I was born. This meant that as I was born early part of my brain didn’t receive sufficient oxygen so didn’t develop correctly as a result my brains sends the wrong signals to my arms and legs.
I had regular appointments with my consultant neurologist who would also record my walking. I remember always wearing the same pair of cycling shorts for these videos. I felt like I was on my own private catwalk in front of the camera (although I am not sure my shorts were much of a fashion statement). It felt event more like a fashion show due to the crowd that would attend these appointments along with my parents. There was the neurologist, a physio and about another three people whose names we were never told, I think they were in training but it made the whole process more of an occasion as I a crowd to impress! I would then walk back and forth across the room in front of the camera. They always tried to get me to walk normally but I couldn’t help putting my best foot forward (literally) and making sure that my walking was just the bees’ knees. I had to walk both with and without my splints. I remember always feeling gutted that the general consensus was that my walking was better with my splints than without. It made me think that the doctors just enjoyed proving the point that they were always right! As part of these video clinics, I also had to balance on one leg. I always chose my right leg first (the best one!) My consultant would count to 20 (felt like the longest 20 seconds in my life!) As my right leg was better than my left, I usually made it to 20 without too many issues on this side. It then came to my left leg… a different story. With this one I put my arms out to help me and as the seconds ticked by my arms would begin to flap more and more, I would also wobble from side to side increasingly like a windmill on steroids. I was always gutted when my right foot hit the floor before the 20 seconds. I still remember the first time that I made it all the way to 20 seconds on my left leg-one of my major achievements to date and even more important when this historic moment was recorded on camera!
Something that is particularly frustrating for me now is the fact that I had very regular and comprehensive appointments when growing up as this is when treatment is most important. When I turned 18, I was told that I would have a transition appointment to pass me onto the adult team. Needless to say, this never happened, surprise surprise! As a result, I have had to go to my GP anytime I want some support. Therefore, since the age of 18 I have not had any follow up in 6 years other than one physio appointment at university. I know this should be a positive as it shows I am maintaining my mobility on my own through my stretches and routine but it has resulted in issues. Just the other day, I went the GP with a painful foot. I felt this was linked to my CP due to the excessive impact I put my feet under through running. I asked the GP for a referral to the adult CP team. After him looking very confused and not having a clue what I was talking about I got the referral. A week later I have my appointment with the adult neurologist -good news, and I was impressed with the fast turn-around. However, when Mum and I arrived, she had no GP referral on her system and none of my medical notes. As a result she had no ways of assessing me or advising as there was no way to know my level previously. However, she was surprised to hear that I had no treatment for the past 6 years Therefore, I was referred yet again. I just feel like I am being passed around the houses for something as simple as not having my notes. Despite this mega rant (the diva is back out again!) I know that the support that I received growing up was second to none and have always been grateful to the NHS for such good quality of care despite the pressures that they are under.
I hope this shows to others going through treatment for their condition, whatever it may be, that you are not alone in the frustrations of the process. Personally, although I hated all the regular doctors’ appointments growing up, I realise now that it was worth it to give me the best chance of living an active life now my muscles have stopped growing. Also, despite my temper tantrums at what felt like constantly being told to walk properly and stretch, I have now built habits and routines that enable me to continue to do this independently.