Cerebral Palsy
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NuckelaveeNuckelavee Member Posts: 3 Listener
edited January 21 in Cerebral Palsy
Hello i came across this site when I was looking for information on CP. My fiance has mild CP that effects his lower limbs. When I first met him he told me he "used to have" CP, he was in major denial about it and just soldiered on. After I did a bit of looking into it, I realised it's a life long condition cause by his pre term traumatic birth. As a Teen he went off the rails and refused to attend appointments and eventually they removed him from thier list and hasn't seen any professional about it for over 15 years. You wouldn't really know he has it unless he is tired or had a drink and he is prone to tripping up and his lower legs are on the thin side. Recently he has been getting a lot of pain in his right hip and leg but is very stubborn and won't go see a Dr. He doesn't even like taking any pain relief but last week he was nearly in tears with pain and ended up taking some.  In the past he has been to see drs but they tell him they're not really experienced with CP and that its probably sciatica. When I worked for my local hospital I did try and find any adult services or anything for CP but it seems that they're all for children. I don't really know what exact info I'm looking for but I have learned a lot from this site already. Sorry for the long post but I didn't know where to start, thanks for reading. 😊
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Replies

  • janer1967janer1967 Member Posts: 9,123 Disability Gamechanger
    Hi there 

    There are lots of posts and members here with CP we also gave a CP virtual meeting on mondays and a CP rep who I will tag in 

    @Richard_Scope
  • Tori_ScopeTori_Scope Posts: 4,010

    Scope community team

    Welcome to the community :) I'm sorry to hear that your partner is having a tough time at the moment @Nuckelavee

    We have plenty of members with cerebral palsy, so you've come to the right place. I've moved your post into our cerebral palsy category so that they can find it more easily.

    As Jane mentioned, Scope and CP Sport run a virtual cafe every Monday that all over 20s are welcome to join. You can find the link to join here.
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  • Richard_ScopeRichard_Scope Posts: 2,725

    Scope community team

    Hi @Nuckelavee
    Thanks for posting. Sounds like your partner is living with diaplegic CP. As we age we experience physiological burnout with increased wear and tear of the hips, ankles and knees etc. This down to the fact that our movements are extremely inefficient and place excess strain upon those joints. 
    There are things that can be done. Your partner's G.P. should be aware of the Adult CP Care Pathway and the Adult CP Multi-Disciplinary Centre at UCLH.
    How old is your partner?

    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • NuckelaveeNuckelavee Member Posts: 3 Listener
    He's 31 now. I did say to him that it could be a sign of arthritis setting in because it's only really flared up this bad when the cold weather came about. Currently we live in Lincoln, we are moving up to Scotland next week to my home town I'm hoping the local GPs will have more experience with patients an CP, since it's a very small community on an island in the north sea. I know of a few locals with various types of CP so hopefully they will have a group or something that he can go to, if he can get over the anxiety of meeting new people. He also starting a new job, 40 hrs a week, week on, week off (During covid). Hopefully that will help because his current job sees him often working 70 hrs a week and travelling all over the place fixing diesel ship engines. I've been worried about him burning out anyway because he works a hard job with not many days off.
  • Richard_ScopeRichard_Scope Posts: 2,725

    Scope community team

    edited January 21
    Arthritis is very common on people living with CP, especially over 30. It is part of what has been termed, Post-Impairment Syndrome. Our friends at Cerebral Palsy Scotland will be able to support you both after your move. 
    It's really difficult admitting things are becoming tougher or different to what you were used to. I found it incredibly hard. But the sooner he can address this he will realise that he is not alone and there is support and solutions.
    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • NuckelaveeNuckelavee Member Posts: 3 Listener
    I'm hoping he will do something because he can't keep soldiering on. Especially when he's in pain. I've been "nagging" at him to seek some sort of pain management for a couple years now, he's just not keen on taking any meds for it. Sometimes I don't know what to say to him. Hoping the local pool will open next month or so to get him do to some exercise, his nan used to take him when he was a child and it helped. She brought him up, she under estimated him thinking he wouldn't be able to work and he would struggle as an adult, but he's proved a lot of people wrong. 
  • WestHam06WestHam06 Member, Scope Volunteer Posts: 1,261 Pioneering
    Hi @Nuckelavee
                                Welcome to the community, thank you for joining us. I am sorry to hear your partner is struggling at the moment due to pain, it can be really difficult to admit that we may need extra support or that things are changing. I had difficulty with this, particularly in my teens, I also have CP. I would encourage your partner to talk to their GP, as this may help him to address some of the physical difficulties he is experiencing. The hardest step is asking for help but once he has done this, he may find things that help him to live more comfortably. Please if you have any more questions, do ask and I hope your move goes well and as you say, swimming pools open soon as this is a great way to do some exercises though there are ways to do exercises at home. Thank you.
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