My experience of having cerebral palsy.

Emeka_1107
Emeka_1107 Community Member Posts: 21 Connected
edited December 2022 in Cerebral Palsy Network
I have had cerebral palsy ever since I was born. Growing up, I had to use a range of equipment to help me manage living with CP such as; a Kaywalker, standing frame, splints and crutches. On the educational side of things, I went to an mainstream Primary school, high school, college and university. On the social side of things, I always managed to make friends easily. However, there were some times when I would get frustrated with having CP as a lot of my friends could do stuff that I found hard to do due to my CP. As I got older, I did reliase that I have always been blessed to have family and friends who continue to encourage me physically and mentally to rise above my disability and love me for me regardless of my disability.

Comments

  • Emeka_1107
    Emeka_1107 Community Member Posts: 21 Connected
    I also used a lycra suit to help my posture
  • L_Volunteer
    L_Volunteer Community Volunteer Adviser, Scope Member Posts: 7,921 Championing
    Thank you for reaching out to us @Emeka_1107. You have done really well sharing this with us. 

    It was really insightful hearing about your experiences with Cerebral Palsy. Family and friends who provide encouragement and unconditional love are super important!  <3
  • Alex_Alumni
    Alex_Alumni Scope alumni Posts: 7,535 Championing
    Hello @Emeka_1107 and welcome to the community, thanks for introducing yourself :)

    I also have CP, so it's interesting to hear that you use a lycra suit to help your posture, as that's not something I've heard about before. What do you like about it most?

    Enjoy having a look around, you can also visit our Cerebral Palsy category if you'd like to share more of your experiences of CP there!
  • Emeka_1107
    Emeka_1107 Community Member Posts: 21 Connected
    Alex_Scope said:
    Hello @Emeka_1107 and welcome to the community, thanks for introducing yourself :)

    I also have CP, so it's interesting to hear that you use a lycra suit to help your posture, as that's not something I've heard about before. What do you like about it most?

    Enjoy having a look around, you can also visit our Cerebral Palsy category if you'd like to share more of your experiences of CP there!
    Hi. I don't really use a lyrca suit now. I did used to hate using my lyrca suit as it made feel uncomfortable.
  • Richard_Scope
    Richard_Scope Posts: 3,954 Cerebral Palsy Network
    Hi @Emeka_1107
    It was fantastic getting to meet you at the Network Zoom meeting last week. Thanks so much for your contributions to the discussion.
  • Emeka_1107
    Emeka_1107 Community Member Posts: 21 Connected
    Richard_Scope said:
    Hi @Emeka_1107
    It was fantastic getting to meet you at the Network Zoom meeting last week. Thanks so much for your contributions to the discussion.

    Hi Richard. It was great meeting you at the Zoom meeting too.  Your welcome. I look forward to attending many more meetings in the future. 
  • L_Volunteer
    L_Volunteer Community Volunteer Adviser, Scope Member Posts: 7,921 Championing
    Glad to hear positive feedback @Emeka_1107. Hope you enjoy the many more meetings in the future too  :)
  • Alex_Alumni
    Alex_Alumni Scope alumni Posts: 7,535 Championing
    Hi. I don't really use a lyrca suit now. I did used to hate using my lyrca suit as it made feel uncomfortable.

    Ah I see, thanks for explaining @Emeka_1107, I used to feel that way about my AFO's as a child, they were very uncomfortable!
  • Poppy_
    Poppy_ Community Member Posts: 192 Empowering
    hi, how are you? 
    It’s great to hear of your experiences of having CP. I also have CP. I also had a lycra suit, although it was more shorts then the entire suit, and AFOs. I also hated them, far too uncomfortable. I remember I used to get massive blisters from them. I did enjoy a Kaywalker, until I got too unable to use it and had to switch to using a wheelchair while out and about. 
    I agree that family does help a lot with encouragement and support, my family and friends are a lot like yours, which has helped me a lot over the years. 
  • Emeka_1107
    Emeka_1107 Community Member Posts: 21 Connected
    Hi Poppy.

    I'm okay thanks.

    How are you.

    Blisters from AFOs are not fun. 

    I remember when I tried to sit on the top of my kaywalker and fell off it and chipped my tooth which in hindsight was not the best thing to do  :smile:
  • Poppy_
    Poppy_ Community Member Posts: 192 Empowering

    Emeka_1107 said:
    Hi Poppy.

    I'm okay thanks.

    How are you.

    Blisters from AFOs are not fun. 

    I remember when I tried to sit on the top of my kaywalker and fell off it and chipped my tooth which in hindsight was not the best thing to do  :smile: :
    I’m good thanks for asking. 
    No, they aren’t, blister plasters were my best friend back then. 
    Definitely not the best thing to do, mine had a fold out seat on.
  • Emeka_1107
    Emeka_1107 Community Member Posts: 21 Connected
    Ah cool.
  • L_Volunteer
    L_Volunteer Community Volunteer Adviser, Scope Member Posts: 7,921 Championing
    Sounds like a nightmare @Emeka_1107, especially the tooth chipping  :(
  • Emeka_1107
    Emeka_1107 Community Member Posts: 21 Connected

    @L_Volunteer Hi. How are you?

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