sharing my experience with cerebral palsy, what is yours? — Scope | Disability forum
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sharing my experience with cerebral palsy, what is yours?

christopherduggan
christopherduggan Member Posts: 2 Listener
edited November 15 in Cerebral palsy
Hello everyone. My name is Christopher and I was born with cerebral palsy. I found this community as I've been wanting to connect with more people like me. I recently turned 30 years old and as I've aged my pain is getting worse. It's quite difficult. I am able to walk with the assistance of a stick. But I am in pain every day and I find it distracting and upsetting. Over my life I've had many surgeries, most notably a spinal fusion in 2012.

I often struggle with my mental health and have since I was a child. Nobody should have to go through this. Though I am able to live an independent life, I will always regret being born this way and wish I could be like everyone else. I wish I could walk for more than a few minutes without being in pain. And I wish people didn't stare at me or that I could blend in with everyone else without feeling self-conscious about being different. I believe in God and would like to think there is a purpose or meaning for what I experience and the many challenges of my life.

Wanted to share a bit of my story not for sympathy, but just to express it to others who might understand. I often find abled people cannot relate to my experience and that includes family, close friends, and even therapists or psychiatrists. I am interested to hear the experiences of others and perhaps make friends :smile: feel free to share here.

There is a lot more I could say but I'll leave it there for now. 
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Comments

  • Alex_Scope
    Alex_Scope Posts: 213

    Scope community team

    edited November 15
    Hi @christopherduggan it's great to meet you and welcome to the community! To help with discussion I've added a cerebral palsy tag to your post, and moved it into the Cerebral Palsy category as I noticed a duplicate post here. I have also removed the link to your Facebook as I'm afraid personal details aren't allowed on the forum.

    I myself have cerebral palsy and have also struggled with my mental health, a lot of our experiences in childhood, particularly of mainstream schooling in my case, do seem to have a lasting impact. I'm glad you've come to share your experience, I'm sure there are plenty of others here who would be happy to do the same.

    Please let us know if we can help in any way and I hope you enjoy your time here :)
    Alex
    Online Community Coordinator
    Scope

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  • Richard_Scope
    Richard_Scope Posts: 2,946

    Scope community team

    Hi @christopherduggan
    Welcome to the community and thank you for your very honest post. I live with quad CP and have also had many, many surgeries in the past and I suppose that left me with the feeling that I was a problem that needed to be fixed. It takes years to feel comfortable in your own skin and everybody reaches that point at their own pace, though some never do and that is okay but battling with yourself and things you cannot change is fruitless and exhausing.
    What have you done to address the physical pain that you are experiencing, are you getting appropriate support at all? I can try to help you with that.

    Scope
    Specialist Information Officer and Cerebral Palsy Programme Lead

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  • WestHam06
    WestHam06 Member, Scope Volunteer Posts: 1,393 Pioneering
    Hi @christopherduggan
                                          Welcome to the community and thank you for joining us. Thank you for sharing your experiences with us, I also live with Cerebral Palsy and can relate to some of the experiences you have mentioned. I acknowledge living with Cerebral Palsy is tough and for me, personally, it is something I don't think I'll ever fully accept or be at peace with, however, I recognise now that it is a part of me and I can't change that. Whilst it causes me many difficulties, it has also enabled me to have some incredible experiences, which I may not have otherwise had. We all deal with our CP in different ways and that's ok. In terms of pain and ageing, I would agree, certain things have become harder as I've got older and I definitely experience more pain. I am fortunate to receive support in managing this through physio and medication as well as other treatments. Please can I ask, are you receiving any support with managing pain? Please do ask any questions you may have, it's important to feel as though you can share experiences with others who may be able to relate a little more. Thank you. 
  • Reg
    Reg Member Posts: 99 Pioneering
    Hello @christopherduggan

    I also have CP and have had surgeries over the years on my hands and hip. I now get about on crutches but it took me many years to accept that I needed them and hand braces. For a long time I tried to stabilise myself with a golf umbrella and hoped for overcast days. I preferred to fall rather than what I thought was accepting defeat.

    Although ageing with CP is not great in relation to pain and mobility ( or at least that is my experience) the one positive with passing years is that you find that what you struggled to accept and were embarrassed by no longer affects you.

    I wondered if you were getting any help from OT? I just thought a rollator rather than a stick may make walking easier for you ? It has been suggested for me but I have a small dog and I think that I would end up running him over. As it is, he is used to having to dodge the crutches so we cope as best we can.

    I still am surprised that my leg does not work so have never totally accepted CP. I would try and think that your struggle to accept your CP may be a positive for you as it may have made you more independent than you would otherwise be? I am still hankering after adventures even if I am lucky to get down the road without a trip and I suspect I will never change. 

    Do you have any hobbies that help to distract you? I find work and the antics of the small dog a great distraction

       
    Reg

    I am a Scope volunteer.
  • DanceDeb
    DanceDeb Member Posts: 10 Listener
    I have CP, while my is mild, i still have aches and pain strangely enough particular at night, sleep disturbance and fatigue. I am an OT, while i understand posture and support myself with the knowledge i have gained. I find life a challenge, i can't respond, always have to plan my activity always putting fatigue break in my daily life. I have used my CP with pure determination to achieve what i have. Although the battle had been hard and long i am proud of who i am. I get anxiety and on antidepressants but it's the fatigue that i struggle with, my muscles get tight and i do some stretches to release my high tone. I am 55 i now finding working full time really difficult. 
    I am i take all the help i can but i am who i am proud of who i am but understand that life will always be  a bit of a fight.

Brightness

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