Triplegic Cerebral Palsy - Walking

bex_h70
bex_h70 Online Community Member Posts: 4 Listener
edited August 2022 in Cerebral Palsy Network
Hello I’m a twin mum with girls just under 2. 
Bella has hydrocephalus and triplegic cerebral palsy. She is very determined but also very frustrated about Robyn being off walking etc.
It got me thinking about how common it is for people with triplegic CP to walk?
Out gait trainer has just arrived and it’s freaking me out a little.
Any insights on walking would be great. 

Comments

  • Richard_Scope
    Richard_Scope Posts: 3,772 Cerebral Palsy Network
    Hi @bex_h70
    Great to meet you. Wow, twins. I'm sure they keep you very busy! I have not met many children or adults with the diagnosis of triplegic CP but there are commonalities that can be found in the limbs affected, be it hemiplegia, triplegia or quadriplegia. There are two very important things that need to happen to increase Bella's mobility. Consistent, regular physiotherapy and patience. Without seeing Bella it is very difficult for me to say how likely she is to walk and even then, children can surprise us!
    What is freaking you out about the gait trainer?
  • bex_h70
    bex_h70 Online Community Member Posts: 4 Listener
    Hello Richard. 
    Just it’s general size and level of support it offers vs the smaller more portable options we discussed at physio. She quite good at pulling up and supported stepping so the frame (Buddy roamer) caught me off guard. Plus we have to wait for fitting and a missing part. So it’s just sitting there waiting. I’ll be better once it’s being used it’s the unknown of how she’ll be with it I think. 

    I’m struggling with regular physio at the moment as we had a lead physio change over and she wants to do more assessments before we book a new block. Hopefully things will be back in the swing of it soon for her we just seem to be waiting. 

    I think that’s what I struggle with the variation in each child seems huge. I like facts and the known but seems that it’s not possible with CP. 
  • bex_h70
    bex_h70 Online Community Member Posts: 4 Listener
    Sorry I hadn’t seen your response. Thank you. 
    Yes we have previous exercises but she’s progressed quite a bit. Physio is always happy with her and what’s been added to her exercises. 
    Seems we aren’t getting a new block either as it’s just the daily stuff she needs at the minute. 
    I’ll remind myself that it is a positive. 
  • Siwheels73
    Siwheels73 Scope Member Posts: 750 Pioneering
    Hi @bex_h70, I do not have Cerebral Palsy, butI have grown up with Hydrocephalus. I am 49 now which, given my life expectancy was 6 months when I was born, isn't too bad! I would be more than happy to talk privately about the ups and downs, if you'd like.
  • L_Volunteer
    L_Volunteer Community Volunteer Adviser, Scope Member Posts: 7,922 Championing
    Thanks everyone for being supportive. It is people like you who make our community the supportive and friendly space it is.

    @bex_h70 How have things been since you last posted on this thread? I appreciate it has been a little while since you last posted on this thread now. Please don't hesitate to let us know if we can do anything to support you  :)
  • bex_h70
    bex_h70 Online Community Member Posts: 4 Listener
    @Siwheels73 thanks I know headaches and memory can be big things throughout life. 

    @L_Volunteer . The gait trainer ended up being too large so back to waiting again. Hopefully the next one will be better. 
  • L_Volunteer
    L_Volunteer Community Volunteer Adviser, Scope Member Posts: 7,922 Championing
    Oh no, what a nightmare @bex_h70. Hopefully, the next one will be better, indeed. Please feel free to let us know how it goes. We are all here for you  :)

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