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Just been diagnosed with mild CP at 44!!
I'm 44 and have just been diagnosed with mild CP! Where do I start.....I always knew I was different. Kids at school weren't pleasant, calling me names. I hated doing PE too.
Once I was working, I was also questioned on 'my walk' and was also asked by a manager if the reason I wasn't as quick as others at work (desk job) because of my disability! I went mad and said 'what do you mean? I don't have a disability!' She replied 'your leg, your limp!' I went mad replying 'I don't type with my feet and there's nothing wrong with me!' Similar assumptions and my replies went on for most of my life. I feel like I've been living telling lies. I also feel I would've lead my life differently if I'd known :-(
I was born breach and believe I didn't breathe for 20 mins. I didn't make any noises until I was 10 days old. I didn't walk until I was 2 and had to be propped up with cushions to sit up. (I may ask my parents to write more about my earlier years later).
As I said I always thought there was something different about me esp the right hand side. When I think back, even over the last 10 years, I occasionally had falls at home for no apparent reason, I could never catch myself, if that makes sense, I would just go down with a thump. I've been always conscious of my walk and balance, even more so as I've got older. I'm extremely clumsy and struggle to carry drinks or lift things like a full cup of tea/coffee with my right hand. My right hand can become extremely stiff and ridged as does my leg, sometimes it can hurt to write as my hand is so stiff, my leg can feel like I have cramp. It's very hard to described! I don't like going down stairs unless I can hold onto something and this is the same with gaps i.e. getting on/off trains. I struggle if I have to standstill for sometime unless I've got something to lean on otherwise I have the feeling I'm going to fall. I've also always been tired, yes I can go to bed late sometimes but so do others but I struggle to get up and can feel like a zombie, heavy body feeling.
I've always gone to the docs for the tiredness, had blood tests which were fine but I'm lacking in Vit D, which I now see is a symptom of CP!?!
I went to my new docs a couple of years ago, when I moved, I broke down and explained how I was feeling especially with my balance and legs. She was lovely and suggested physio. No docs had ever suggested this before! I went to physio and again broke down, the physiotherapist listened and said that she wanted to speak to a more senior physiotherapist within the neurological/rehabilitation physio part of the hospital. I thought nothing of this and they wanted to see me, I did feel abit silly as other patients there were in wheelchairs or had noticeable disabilities i.e. Strokes etc. However, they listened to me and I went to them for quite a while, this really helped. I was discharged but given the option to contact them at any time. They did suggest some medication Beclofen which would help with my tone. I got the prescription but the pharmacist said that I couldn't drive or drink alcohol while taking them!! So I went back to see my docs who got me the physio to talk to her about it. She said it's such a small dose that I'd be taking so it'll be no problem. I asked more questions as to what it's for etc. This is when I was hit with the words 'palsy, it's what's known as mild cerebral palsy'. At last I thought someone has finally said I have a condition, that's all I've ever wanted is to know what and why I feel like I do. I left feeling pleased in a funny sort of way but then that soon wore of and realisation hit me like a big brick. I've read up about CP and all the symptoms are me!!
I'm feeling angry, upset as to why I wasn't told this earlier. I really don't know what to do :-( My Mum and Dad are feeling very guilty that they didn't push for answers in my earlier years.
Sorry I've rambled on; I could keep going!
I understand from reading other posts that this is common to be diagnosed later in life! Would like to hear from others in a similar situation please, any help, guidance?
Thank you for taking the time to read this.
Thank you for taking the time to read this.