Athetoid cerebral palsy in your 50s

DanceDeb
DanceDeb Online Community Member Posts: 36 Connected
in Cerebral Palsy Network
Hi all I have athetoid cerebral palsy, it effects my left forearm and hand causing tremor, balance effected but I can walk but can't ride a bike, coordination difficult, impaired speech and have difficult controls my facial expressions.  I can sometimes  swallow incorrectly,  and while my fatigue has always been there it so much worse.  As i age my weakness in my hands and wrist is worse, i have anxiety and depression, i have thanks to Scope reduced my working week to 30 hrs a week. I recently requested  my GP to refer me to London University college hospital to see if I have post impairment syndrome,  but just because I can walk he's not seeing the whole affect of my cp is having on me , he did do what I asked i hope that the hospital can see beyond what the tradition View of CP. We all know that we are different to each other. I want a explanation to what is happening and what to expect and way to manage the Smytoms. I am dyslexia, double vision, and hard of hearing too but I work hard to lead a good quality of life. Any advice when visiting the hospital will be great. Appointment is in October 

Comments

  • Richard_Scope
    Richard_Scope Posts: 3,719 Cerebral Palsy Network
    Hi @DanceDeb
    I'm very happy to read that you have been referred to UCLH for assessment.

    One thing that I would suggest is making a list or a voice note of the questions you want answers to. I used to find that at appointments, I would leave thinking, I should have asked this or that! So, now I have my questions pre-prepared. Also, leave nothing about how your CP has changed out. This may sound obvious but we are conditioned to say what we can do and downplay the tougher parts of our lives.

    Let me know how you get on.

Categories