Cerebral Palsy
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Hi

CPfighter1990CPfighter1990 Member Posts: 14 Listener
Have you found that your CP has got worse as you’ve got older? Do you manage to get physio therapy? If so how? I’ve not had Physio in six years.

Replies

  • nicebootsniceboots Member Posts: 196 Pioneering
    Hi @CPfighter1990 I’m in my early 30s and yes I’ve found the effects related to my cp have got worse as I’ve got older, although I do manage them pretty well. I didn’t see a physio from the age of 18, (when I was discharged from paediatric services) to the age of 23-24, when I found I was really starting to struggle. I went to my gp and requested a referral to physio and orthotics. Unfortunately the gp I saw knew so little about cp, she referred me to the wrong type of physio, who although really helpful and really good at stretching me out had to re-refer me to the neurophysio, so I had another long wait to see the right person. 
    When I did get the right physio it really helped, they could only give me six sessions, but we got the right exercises and stretches to suit me and got the right orthotics for me too. 
    I just have to contact my gp if I feel I need more physio, and he will refer me, I don’t even need to see him, I just get a message to him. 
  • Richard_ScopeRichard_Scope Posts: 2,727

    Scope community team

    Hi @CPfighter1990
    Good to meet you and welcome to our community. I have also noticed a decline in my mobility since I have gotten older. Adults with CP can sometimes experience some physiological burnout due to the amount of energy we use and the way we move. 
    I agree with @niceboots that some of this can be slowed by physiotherapy, hydrotherapy and the right orthotics and equipment. I also feel it's important to 'listen' to your body and try to manage your energy levels. For example, I try to complete my most demanding tasks in the morning, when I feel fresher. 
    I haven't had any physiotherapy in relation to my CP for many years. I tend to exercise myself, particularly swimming. I would contact your G.P. to have a discussion about physiotherapy. There is also this free physio app might be of interest to some. It illustrates 600 exercises, many of which appear to be appropriate for some people with CP: 

    https://www.physiotherapyexercises.com/ 

    Not as good as consulting a physiotherapist but maybe a starting point.

     



    Scope
    Specialist Information Officer - Cerebral Palsy

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  • atlas46atlas46 Member Posts: 827 Pioneering
    Hi @Richard_Scope

    Came across this charity that provides grants for Physio and the likes.

    hsfcharity.com and tel 020 7202 1365.

    It is the charity for whats called the hospital Saturday fund going back to 1873.

    Sorry can't do the link thing.

    Interested in what you think.
  • Richard_ScopeRichard_Scope Posts: 2,727

    Scope community team

    Thanks, @atlas46 I will take a look!
    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • Richard_ScopeRichard_Scope Posts: 2,727

    Scope community team

    I researched the organisation suggested by @atlas46. It may be something to consider?

    The Hospital Saturday Fund is a charitable organisation that can provide grants for those with immediate health needs. 

    Grants are provided for things such as specialised mobility equipment and therapeutic treatments including physiotherapy. 

    You can apply for a grant by clicking here https://www.hospitalsaturdayfund.org/ 



    Scope
    Specialist Information Officer - Cerebral Palsy

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  • MonkeyFaceMonkeyFace Member Posts: 8 Listener
    This thread makes me very sad... :(

    When he was too young to understand the value of his physio my little guy would look me in the face and say in all seriousness "I hate you" And for years I have promised him that his physio could stop when he stopped growing. For a few years now he understands the value of physio and exercise because he is more mature...But now how can I break this to him? How awful is this?
    Marc
  • nicebootsniceboots Member Posts: 196 Pioneering
    Hi Marc, sorry to hear this thread makes you sad. It must be so hard as a parent to have to make your child do physio. I can sympathise. I hated physio as a young child, at times I still do. 
    In my experience, physio, hospital appointments, splints and all the other things that go with having cp just become part of life. Almost like cleaning your teeth, It doesn’t always make it easier, but I have just accepted it. I was really lucky that I had amazing physios and consultants that came up with ways of me focusing on the benefits, and ways to encourage me. If all else failed bribery worked on me too... for example I had a reward chart when I was little, for every 15 minutes in my standing frame, I’d get a star. Then they’d be exchanged for pocket money. My friend does similar with her little one that has cp, physio and splints gets him time on the iPad. 
    I really hope you find things get easier, please don’t be afraid to ask questions if you need to, that’s what the community is all about 
  • MonkeyFaceMonkeyFace Member Posts: 8 Listener
    Your message made me smile. Thank you so very much NiceBoots...(I almost typed NiceBoobs!....OOOOPS!!!) Julian understands much better now about the value of all the effort through his physio. But I'm sure that he resigned himself to dealing with this only until he stops growing. As I promised him. What a **** I am for promising something that isn't true. But I didn't know. I need to figure a way over the next couple of years to gently peddle backwards on my promise. If you take a peek at two videos I have of him over a four year spread...you'll understand why all the professionals tell him how great he has become because of all his hard work...but he was promised it would stop... :(


    Thank you again for your supportive words NiceBoots!
    Marc

  • nicebootsniceboots Member Posts: 196 Pioneering

    Haha! Brilliant!! Wow! what a transformation! Those videos really prove that hard work pays off! Glad I've made you smile :)

    Love the website, really interesting concepts there, I'd never have thought of using censors to remind of bad posture, that should be marketed! when I was that age I just had my parents, teachers and physio constantly nagging me to 'put my heels down' or stand straighter!

    I didn't begin to realise the benefits of physio until my early teens when I had major surgery and the rehab was really hard work, but I could physically see and feel the benefits.

    I still have off days (or weeks!) with physio, and then suffer for it!

  • MonkeyFaceMonkeyFace Member Posts: 8 Listener
    Thank you NiceBoots! (feels funny writing that every time!) Reminds me a little of when Julian's big brother went to visit him for the first time in intensive care and still in the incubator....the only thing he said was "Small feet"

    I am actually working on a device that I'll look into marketing...but there are only 24 hours in the day.

    Been good talking with you and thank you for your moral support! Really appreciate it!
    Marc
  • TopkittenTopkitten Member Posts: 1,263 Pioneering
    Whilst children are granted long-term physio it usually isn't available to adults. GP referrals can give 6 sessions for most of the things they refer you for (including physio) and sometimes this can be repeated but usually with long delays in between. In hospital physio is usually available (depending what you go in for) but still only last until recovery is complete although sometimes a few sessions as out-patients are added on. If you want regular sessions of anything the only way is to go private.

    This is all part of the economy drive that has become a standard part of NHS working practices.

    TK
    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
  • CPfighter1990CPfighter1990 Member Posts: 14 Listener
    Hi all 

    thanks for the advice  :):):):):)
  • CPfighter1990CPfighter1990 Member Posts: 14 Listener
    Hi @CPfighter1990
    Good to meet you and welcome to our community. I have also noticed a decline in my mobility since I have gotten older. Adults with CP can sometimes experience some physiological burnout due to the amount of energy we use and the way we move. 
    I agree with @niceboots that some of this can be slowed by physiotherapy, hydrotherapy and the right orthotics and equipment. I also feel it's important to 'listen' to your body and try to manage your energy levels. For example, I try to complete my most demanding tasks in the morning, when I feel fresher. 
    I haven't had any physiotherapy in relation to my CP for many years. I tend to exercise myself, particularly swimming. I would contact your G.P. to have a discussion about physiotherapy. There is also this free physio app might be of interest to some. It illustrates 600 exercises, many of which appear to be appropriate for some people with CP: 

    https://www.physiotherapyexercises.com/ 

    Not as good as consulting a physiotherapist but maybe a starting point.

     




  • CPfighter1990CPfighter1990 Member Posts: 14 Listener
    Hi @CPfighter1990
    Good to meet you and welcome to our community. I have also noticed a decline in my mobility since I have gotten older. Adults with CP can sometimes experience some physiological burnout due to the amount of energy we use and the way we move. 
    I agree with @niceboots that some of this can be slowed by physiotherapy, hydrotherapy and the right orthotics and equipment. I also feel it's important to 'listen' to your body and try to manage your energy levels. For example, I try to complete my most demanding tasks in the morning, when I feel fresher. 
    I haven't had any physiotherapy in relation to my CP for many years. I tend to exercise myself, particularly swimming. I would contact your G.P. to have a discussion about physiotherapy. There is also this free physio app might be of interest to some. It illustrates 600 exercises, many of which appear to be appropriate for some people with CP: 

    https://www.physiotherapyexercises.com/ 

    Not as good as consulting a physiotherapist but maybe a starting point.

     




  • Richard_ScopeRichard_Scope Posts: 2,727

    Scope community team

    @CPfighter1990
    Anytime! We're always here for a chat.
    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • Richard_ScopeRichard_Scope Posts: 2,727

    Scope community team

    Hi @JessAnn
    Don't apologise, rant away! It can be very therapeutic to get it off your chest. I have lost mobility over time as well. I'm quadriplegic and use a wheelchair. Do you wear orthotics? If you do, it might be an idea to try and get a review of your orthotics. 
    It can be difficult for people without CP to understand what the effects are like and the amount of energy it takes us to perform some basic tasks. 
    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • Richard_ScopeRichard_Scope Posts: 2,727

    Scope community team

    If you would like to, we could work on a way of explaining it to your parents.
    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
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