Cerebral Palsy
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CP and an amputee

jakijaki Member Posts: 8 Listener
Hi my boyfriend lives in Guildford and has cerebral palsy he also has had a below knee amputation so getting around even more difficult ?? Any other people with  CP and amputation as well. 

Regards

Replies

  • emmarenshawemmarenshaw Member Posts: 712 Pioneering
    Hello @jaki I'm Emma, one of the Community Champions who are here to help and advise. I do have CP but I'm not an amputee. I'm going to tag Scope's CP advisor @Richard_Scope to see if he can assist you.
     Maybe an assessment from an Occupational Therapist is needed just to see what his needs are and look at what equipment and help can be put in place to help him move around the house more easily. 
  • jakijaki Member Posts: 8 Listener
    Hi Emma many thanks for your reply. Robin has a brilliant ot who has done so much for him. Just wondered if any other CP have amputee as well. He is so different to other amputees he doesn't have a good leg at all. 
    Regards 
  • thespicemanthespiceman Member Posts: 6,408 Disability Gamechanger
    Hello @jaki   Pleased to meet you welcome.

    Thank you for joining and sharing.

    Sorry to hear what your boyfriend is going through. Please if I can add probably need to look at the advice given by my friend.

    @emmarenshaw who has given some good advice and guidance.

    I am one of the team of community champions also.  Please can I ask have you been in touch with.

    The Cerebral Palsy organisation for anything else they can provide.

    https://www.cerebralpalsy.org.uk.

    Might be useful to contact.

    Also as stated by my friend we have a dedicated member of our team . @Richard_Scope .

    Hope that helps you.

    Please there will be members who have similar issues and hopefully be in touch to help and offer anything.

    Please take care.

    @thespiceman
    Community Champion
    SCOPE Volunteer Award Engaging Communities 2019
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  • emmarenshawemmarenshaw Member Posts: 712 Pioneering
    @jaki Oh that's good to hear. Perhaps his OT can have a chat with him about whether he needs anything or even perhaps a homevisit from his GP to see if he can get help with his knee?

    As @thespiceman said  we have lots of members, so if you or he need any support or have any questions we're always here. 
  • Richard_ScopeRichard_Scope Posts: 2,829

    Scope community team

    Hi @jaki
    Good to meet you and welcome to the community. I live with CP myself but I have to admit I do not know of any amputees living with CP as well, apart from your boyfriend. This must present a real challenge for you both. Does Robin now use a wheelchair, or was he a wheelchair user before?
    The Amputation Foundation might have some useful practical solutions for you and I will support you bath as much as I can.
    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • Chloe_ScopeChloe_Scope Scope Posts: 10,653 Disability Gamechanger
    Welcome to the community @jaki! Please let us know if we can do anything to help. :)
    Scope

  • AilsAils Member Posts: 2,268 Disability Gamechanger
    Hi @jaki and welcome to the Community.  It is nice to meet you and thank you for sharing with us.  I hope you and your boyfriend receive all the help that you need.  Certainly everyone on the forum is here to support you should you need it.  If there is anything we can do for you then please just give us a shout.  All the best.  :smiley:
    Winner of the Scope New Volunteer Award 2019.   :)
  • Chloe_ScopeChloe_Scope Scope Posts: 10,653 Disability Gamechanger
    Hi @jaki, how are you getting on? :)
    Scope

  • jakijaki Member Posts: 8 Listener
    Hi Chloe many thanks robin got a second opinion privately and needs a lot more physio here's hoping. 
  • Chloe_ScopeChloe_Scope Scope Posts: 10,653 Disability Gamechanger
    Hi @jaki, I am glad to hear support will be put in place. :)

    Please do let us know how they get on!
    Scope

  • J_NicoJ_Nico Member Posts: 3 Listener
    Hi @jaki, I'm also an amputee with cerebral palsy. I'm an above knee and have spasticity so is difficult to walk even with crutches. How is your boyfriend getting on? I have to use a wheelchair most of the time but I'm hoping to get the the point where I can wear a prosthetic everyday. I have been an amputee for 2 and a half years and progress has been slow but I'll get there some day. 
  • jakijaki Member Posts: 8 Listener
    Hi robin is a below knee amputee. He is able to wear his prosthesis daily but it's not great. He is trying to improve strength in his legs but it's not great. Hope you do ok it's a big change. We have to really plan now for access and toilets etc. Take care 
  • jakijaki Member Posts: 8 Listener
    Robin was in a chair before for any distance. In it a lot more now. 
  • J_NicoJ_Nico Member Posts: 3 Listener
    Same here, I was in a chair for distance before but could walk unaided for short distances. It's quite uncomfortable to wear an above knee socket while sitting in a wheelchair, hence if I go out I have to take my prosthetic off. I find the socket generally quite uncomfortable so have plans to go private for my next socket as some people have said it's made a difference to them. I'm lucky that I have a council flat that's all on one level so I can get about and use the bathroom. Does Robin have balance issues or it it mainly a strength issue? I don't have a problem with balance myself, it's an issue of being able to extend my good leg enough to get the foot down and also having back pain as I have contractures in my hips on both sides, and a scissor gait 
  • jakijaki Member Posts: 8 Listener
    Hi it's both really. Robin has a rolling fair. He got a second opinion too and they suggested more physio. To be honest as specialised as roehampton were don't think they addressed the cerebral palsy really. Robin has a rolling fair. He can still drive his car but took Swansea months to confirm it tho he drove with the non amputated leg anyway. Swansea couldn't get their dozy head round pregabalin other than for fits so they kept sending pages asking what his fits were like We do go to a limb user group run by roehampton. They are very long standing amputees. Where about do you  live robin is in Surrey. 
  • J_NicoJ_Nico Member Posts: 3 Listener
    That happened to me as well when I told the DVLA I was on pregablin they kept asking me about fits even though I already told them I don't have them. My amputation doesn't affect my driving as I have a right leg and drive an automatic. I live in Brighton and go to the Sussex rehab center. It was quite frustrating at first cos the rules of the NHS are that you have to wait 18 months after your op before they'll let you trial a computerised knee so I was struggling on a free swinging knee which was really difficult with having CP and I developed some funny walking habits but now thankfully I have a c-leg which is a lot easier. The physios at my rehab center did help my CP by giving me excersises I could do which would stretch my hips out. It would be good to keep it in touch with you guys if you want to, my email address is [email protected]
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