Ataxic Cerebral palsy

Bren0412
Bren0412 Online Community Member Posts: 4 Listener
edited April 2023 in Cerebral Palsy Network
Hi all, 
My name is Brenda and I'm 59. Recently after obtaining my old medical records. I have only very recently discovered that I was diagnosed in 1966 with having mild ataxic cerebral palsy. My parents (both deceased) told me I had mild cerebral ataxia which I now know was not the case. I had my last assessment at the age of 11.in 1975.There after no professional checks ups. No treatment. My life has been very difficult. With chronic pain in legs, osteoarthritis, diabetes. 
I am here to seek advice, support and to be able to do same for others. 


Comments

  • L_Volunteer
    L_Volunteer Community Volunteer Adviser, Scope Member Posts: 7,922 Championing
    Hi @Bren0412. Thank you for reaching out to us. How are you feeling after accessing your older medical records? It sounds really difficult for you that there have been no professional checkups or treatments :(

    In an ideal world, what would advice and support look like for you at the moment? We are here for you and, hopefully, we can provide advice and support.

    Thank you for being willing to support others. It is people like you who make this community the supportive and friendly space it is  <3
  • Adrian_Scope
    Adrian_Scope Posts: 11,750 Online Community Programme Lead
    Good morning @Bren0412 and a warm welcome to the community! It's great to have you here. It takes courage to share your story and seek support, so well done to you for taking that step. I'm sorry to hear that you've been dealing with chronic pain in your legs. Is that what prompted you to try and get your old medical records?

    It's good that you were able to obtain them and get a better understanding of your diagnosis. 

    I'm going to tag in our Cerebral Palsy information officer @Richard_Scope who should be around next week and I hope that by joining our community, you'll be able to connect with others who have experienced similar things and may be able to relate or benefit from your experience.

  • Bren0412
    Bren0412 Online Community Member Posts: 4 Listener
    Hi there, my story is long and complicated. When I read a person's story here that sounded so like my own and relatable. I realised I was not alone. So yes meeting others and sharing views, experiences. Is really helpful for as I only just finding out why I've struggled through out my life when perhaps i didn't have to and and to find out the truth of a diagnosis I didn't know I had makes me aware now. It was never my fault. 
  • L_Volunteer
    L_Volunteer Community Volunteer Adviser, Scope Member Posts: 7,922 Championing
    It sounds really positive that you realised you are not alone @Bren0412. You are right, it was never your fault  <3
  • Alex_Alumni
    Alex_Alumni Scope alumni Posts: 7,538 Championing
    That's lovely to hear @Bren0412 and I'm only sorry to hear that you didn't have the support you needed growing up.

    I'm so pleased you feel less alone now finding this community. I myself have a different type of CP, spastic diplegia, so if you did want to chat about anything, just shout :) 

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