One being, while scrolling through Facebook this morning I saw a post on a Cerebral Palsy Page, it was a woman asking for advice regarding her son’s new splits. I felt the need to comment but refrained through fear it would be seen as negative. I cannot believe children are still recommended to wear those torturous devices! As a child I was forced to wear these daily and can still very vividly remember the blisters, rubbing, skin nipping almost 30 years later. I tried both fixed and jointed versions. 30 years later a stranger shares a picture of equipment that has been designed to aid her child and it looks exactly the same!! Has medical research not progressed in this time? I guess it hasn’t for conditions that are caused by the unknown.

As a young child I had lots of physiotherapy, in fact I had a therapist that I vaguely remember would visit the house, her name was Chris. I was very young and VERY stubborn. My memory tells me that I wasn’t her biggest fan. However, my mother tells me she was brilliant. Needless to say she was key in me gaining my mobility and eventually learning to walk – I remember doing lots of ‘bridging’ (laying on my back on the floor and lifting my bum up). We also had a Child Development Centre on the hospital grounds, I also spent what (even now) feels like eternity at this place attending more physio sessions and seeing specialist Doctors that knew very little about CP. From here we would also attend Orthotics, I had specialist boots for a while. Then the dreaded white plastic Calipers. I had heel raises. Wedges put in my shoes. Did any of it do any good? Not really. Maybe it all served some purpose, perhaps some support while my muscles developed. Personally, I just remember being uncomfortable and ridiculed at school. In the end I stopped wearing it all and just wore hi-tops or Converse.

Then as I turned 10/11 I was referred to a specialist at Sheffield Children’s Hospital. Here I was examined, poked, prodded and offered ‘ground breaking surgery’. It was only really ground breaking because it was unknown. But the promise of making me walk ‘properly’ and stand straighter was tempting for everyone involved. I had my first surgery at the age of 12. It was a multiple tendon release and muscle transfer on both legs and partial fusion of the hips. With all the great will in the world, it didn’t work, in fact it made my walking more awkward and my body stiffer. I had another surgery at 13 years of age at the same hospital, similar procedure to the first, equally unsuccessful. I later found out that these operations were unsuccessful because I was too old and my muscles too developed. At 15 I had another surgery, this time back home at my local hospital, this one was more efficacious, I could plant my right foot flat to the floor for the first time since the original surgery. Slowly I gained some strength and was able to walk quite well for some years. The problem with these surgeries is that they are performed while the body is still developing. My right leg was stunted and is just over an inch shorter than the left so I have quite a pronounced gait. Another issue is that they don’t last forever, I had follow up tendon releases at the age of 22 and 23. At the point I promised myself no more surgeries. At some point enough is enough and the benefits no longer seem to out-weigh the trauma and recovery time. Yet here I am at 34, almost 10 months post-op again, but if you are a reader of my blog, then you know all about that.

CP affects everyone differently and that is one of the biggest problems with treatments. The major issue I have with my body as I have aged is stiffness, personally, I believe I have benefited very little from surgical intervention. Having said that, without it who knows how good my mobility would be.

Over the years, I have gotten to know my body. What its limits are, what it can/cannot do. What treatments it likes to ease stiffness and spasms. Hot baths are my favourite, especially when it is cold out. Ice packs for swelling/oedema followed by heat treatment. Massage is also important, it helps relax the muscles and reduces the intensity of any spasms. Exercise is the most vital part of my wellbeing. Stretching and using my muscles keeps them strong. After all, stability is the key to remaining mobile.