Cerebral Palsy
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Hi, I'm Sahrash! Opinions wanted about how useful a walking frame is for my son.

SahrashSahrash Member Posts: 5 Listener
edited February 4 in Cerebral Palsy
Please can someone advise from their past or current experience will a walking frame help overtime? My son is 4 and a half and doesn't move at all in the walking frame which he uses at school only. 
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Replies

  • Cher_ScopeCher_Scope Community Team Posts: 2,699 Disability Gamechanger
    Hello @Sahrash and welcome to our online community :)  I'm glad you found us.

    If I could just ask a few questions to help us better offer support, was your son given the walking frame as a result of an assessment by a physiotherapist or similar?  And if so, what was their advice about long-term use? 

    Also, if you don't mind sharing, what condition does your son have that requires this aid? 

    Take care and I'm looking forward to speaking again soon.
    Online Community Co-ordinator

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  • Tori_ScopeTori_Scope Community Team Posts: 3,210 Disability Gamechanger
    Welcome to the community @Sahrash :) Thanks for reaching out to us. Please do let us know a few more details so that we can do our best to help, if you feel comfortable doing so. 
    Online Community Coordinator, she/her

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  • SahrashSahrash Member Posts: 5 Listener
    Hi @Cher and @Tori and thanks for the reply  :)

    Yes the Physio and my son's doctor recommended the walking frame. So that he can build on strenghting his legs. Also to encourage my son to try and take steps. 

    My son was diagnosed when he was just under 2 with Spastic Celebral Palsy. This was confirmed through a MRI scan which showed PVL. 

    If you require any more information please let me know. Speak soon  :)
  • Richard_ScopeRichard_Scope Community Team Posts: 2,587 Scope community team
    Hi @Sahrash
    Thanks for posting. I have CP too and when I was younger I used many types of walking frames. It is important that your son is helped by the physiotherapist and you to use the frame as you said by helping him to learn how to take steps. This needs to be done daily as part of his physiotherapy regime. so he gains muscle memory.
    Scope
    Specialist Information Officer - Cerebral Palsy

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  • SahrashSahrash Member Posts: 5 Listener
    Hi @Richard lovely to hear from you. It's great to get advice from someone that has CP. Are you able to walk now? Has the walking aids etc helped?
    We will start using the walking frame everyday now as I have brought this equipment home from school. How many hours in the day should he be in a walking frame? Is there anything else we can do to encourage him to stand or weight bear? 

    My son isn't getting much help from the Physio. They haven't seen him now over a year. 
  • Richard_ScopeRichard_Scope Community Team Posts: 2,587 Scope community team
    edited February 5
    I walk very rarely now. I prefer the speed and safety of my wheelchair. The key is to try and make it fun and incorporate it into the daily routine. Unfortunately, the pandemic has had a huge effect on physiotherapy services. There are some organisations that you could contact:
    Specialist movement therapy UK, Childrens Physiotherapy (the-movement-centre.co.uk)
    and
    Holistic therapies to help children with movement disorders (cpotential.org.uk)
    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • WestHam06WestHam06 Community champion, Scope Volunteer Posts: 1,134 Pioneering
    Hi @Sahrash
                           Welcome to the community and thank you for joining us. How are you? I have Cerebral Palsy and used a walking frame for a short while when I was younger. Physiotherapy is really important as it helps with muscle memory and it's important to encourage walking in the frame as part of this. It's also important to make it fun and enjoyable though I appreciate at times this may be difficult. Please do ask any questions you may have and I am happy to try to answer. All the best, thank you. 
  • SahrashSahrash Member Posts: 5 Listener
    Hi @Richard
    That's perfect, I have had my little boy in the walking frame today. He started moaning after 15 minutes. I will start to use this consistently everyday for at least an hour a day. Thanks for mentioning a couple of organisations. I have just made contact with them.
  • SahrashSahrash Member Posts: 5 Listener
    Hi @WestHam06,
    Thanks for the reply  :)
    I'm good thanks and hope you are well too! It's very difficult to look after my little boy as he is getting bigger as time goes on. I will continue using the walking frame. At school he has his standing frame too. I want to start some physio on his legs by either massaging the stiff muscles or applying pressure. Is there anything in particular you would recommend? Thank you
  • WestHam06WestHam06 Community champion, Scope Volunteer Posts: 1,134 Pioneering
    edited February 9
    Hi @Sahrash,  
                            I'm pleased to hear that you are well. I can imagine it must be difficult to adjust as your little boy grows but hopefully professionals will be able to support you with advice and guidance in relation to different challenges as they arise. I know when I was younger, and please can I stress this is personal experience and opinion, my Mum adapted and found ways around different things often through trial and error, finding what worked  best for me as an individual and as a family. You know your son best and so with professional advice and your instincts, it's possible they will meet in the middle and you will find things that work for your son and you. Remember, no two people with CP are affected in the same way, we're a fantastically unique group of individuals :)  I would recommend speaking with your son's physio in relation to massage and applying pressure. I would recommend physio as this is a really benefical way to support muscle stiffness and tone. Though currently not possible, swimming is another really benefical form of exercise as well as being fun. Physio is something I resisted as a child and even more so as a teenager causing long-term problems as a result. I now do it daily. I hope this is helpful and please do ask anymore questions. Thank you.
  • WestHam06WestHam06 Community champion, Scope Volunteer Posts: 1,134 Pioneering
    Hi @Sahrash
                            How are you and your family? How is your little boy getting on with regards to using his walking frame? Thank you. 
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