Spina Bifida

Join the Conversation on
Spina Bifida
2.7K people
0 stories
871 posts
  • About Spina Bifida
  • Explore Our Newsletters
  • What's New in Spina Bifida
    All
    Stories
    Posts
    Videos
    Latest
    Trending
    Post

    Ideas???

    Hi everyone! I'm Aly, I have spina bifida and cerebral palsy, I want to spread awareness and tell my story. Any ideas on where to start or what to write about?? #SpinaBifida #SpinaBifidaAwareness . #CP
    #mystory

    1 comment
    Post
    See full photo

    I'm sorry I didn't post yesturday.

    Picture Description: To make a difference in someone's life, you don't have to be brilliant, rich, beautiful or perfect. You just have to care. #Believe #Positivity #SpinaBifida

    3 reactions
    Post
    See full photo

    I have had Spina Bifida since birth and while I have usually taken the acceptance approach to some of the things that come along with it I have decided that there are some things I want to do differently this year.

    One of the big issues I have are hip, and knee contractures. We're not talking about slight. I am stuck in the same position standing up as I am sitting down. I can't lay down flat I can't straighten out at all.

    I have been through physical therapy and there is no way in this world anyone could afford the amount of PT it would take to correct this. I have inquired about surgery but the information I get is basically just cut my muscles from the bones and cut the tendons which will render my legs useless. They don't work well but I want to keep the function I do have.

    Over the weekend I have done a lot of research and to stretch my hips I would have to basically devote 20 hours a day to it. No one can do deep yoga type stretching 20 hours a day. I have a job (I work for The MIghty) I have a life. What I don't have is braces. I had them when I was little and they kept me in a normal straight position.

    The braces were taken away when I was 8 and I fell into the position I am in now because I just don't have the muscle strength to hold myself up. So I have gone to amazon and found a brace that looks almost similar to part of the set up I had as a child. I could wear a brace 20 hours a day. So I am going to start testing some things out on my own to see if I can make any progress. I already have an idea to build a desk kind of like the one I had when I was small and in braces in the photo. Someone made that for me and it was perfect. I couldn't fall because I was surrounded and I could just go about my business. Not the typical standing desk one works at but I plan to build one of these for the 45 year old version of me.

    I have accepted what "is" but now I want to see what I can do. I am doing it on my own but going to see what I can do to better my own situation since medical intervention has been so out of reach.#MightyTogether #Disability #SpinaBifida

    Post
    See full photo

    Spread SB awareness

    First I would like to say happy Halloween to you all.

    Picture Description: Keep calm and spread Spina Bifida Awareness.

    Today is the last day of Spina Bifida awareness month. I want to know what you did to spread awareness this month?

    #SpinaBifida #Awareness

    Post
    See full photo

    Look at your Spina Bifida as a positive not a negative

    Picture Description: We don’t always choose what happens to us, but we can choose to see it as a positive, to believe it is for the best, and to use it to grow.

    What does this quote mean to you as someone with Spina Bifida and or Hydrocephalus.

    Don’t look at your disability as a negative. Instead think of all the obstacles you overcame as someone with a disability. What are the obstacles you faced in your life that a lot of people said you wouldn’t? Please be respectful to each other. #SpinaBifida #InspirationalQuotes

    Post
    See full photo

    Look at your Spina Bifida as a positive not a negative

    Group Name: SB & Hydro Warriors group
    Title: Look at your Spina Bifida as a positive not a negative
    Date: October 24, 22

    Picture Description: We don’t always choose what happens to us, but we can choose to see it as a positive, to believe it is for the best, and to use it to grow.

    What does this quote mean to you as someone with Spina Bifida and or Hydrocephalus.

    Don’t look at your disability as a negative. Instead think of all the obstacles you overcame as someone with a disability. What are the obstacles you faced in your life that a lot of people said you wouldn’t? Please be respectful to each other. #InspirationalQuotes #SpinaBifida #Hydrocephalus