Cerebral Palsy
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I am new on here and want to meet new people, to share stories with

lucy1994lucy1994 Member Posts: 7
edited March 2015 in Cerebral Palsy

hi I'm lucy. Im 20. I live in Shropshire.I'm in a
wheelchair. I can't talk but I can understand everything just like you.
Sometimes I can get so frustrated because I'm in a wheelchair and I can't talk.
Sometimes I feel like no one understands how I'm feeling. That makes me so
down.

I have cerebral palsy and am looking to find people to talk to

Replies

  • NoahNoah Member Posts: 430 Pioneering
    Welcome to Scope's online community Lucy,

    Its great that you are reaching out to people, and are able to communicate to us all on here,

    Many of us, to some degree do understand the the different challenges that one faces with Cerebral Palsy. There are many very interesting and inspirational stories within the online scope community, we would love you to tell us some more of your story.

    I imagine you have developed endless patience not being able to talk, and probably some ingenious ways of communicating, that most of us have never thought of, as we take being able to talk for-granted.

    Do you have any hobbies? Have you discovered dance movement as a way to communicate? Do you enjoy writing or doing artwork?  

    Look forward to reading some more of your story.

    Noah
  • lucy1994lucy1994 Member Posts: 7
     Hi Noah, Thank you for your comments. I like listening to music, swimming, driving my off-road buggy, going to pubs  and doing art.  I paint  with paintbrushes attached to poles.   You can see some of my work on my facebook page Handmade by Lucy.
     After school I had a year out before I went to residential college. I was very unhappy at college and had to pack it in.  It was so hard packing in college because I thought that people were angry with me. I live back at home now and have a wonderful friend called Amy who comes to help me. We have great fun.
    I have 2 older brothers, and one twin brother. They are called Mikey, Jamie and Sam. 
    I would like to talk to other wheelchair users who might understand how I feel.
  • NoahNoah Member Posts: 430 Pioneering
    Your welcome

    I like the idea of painting with brushes attached to poles, sounds like good fun. I wasn't able to find examples of your work - maybe you can put a link up or something.

    I bet driving your off road buggy is fun to, and gives you chance to get out and see the countryside - Do you take photos of where you have been, and try converting them into paintings?I was at an art exhibition a few years ago where an artiest, used photos and a mixture of wax and paint to layer up his paintings, in an abstract way, it really was very effective. And they sold for around £600 each!  

    A very good friend of mine who has been ill for over 10 years with ME which confined him to his bed almost all the time, has recently moved to the coast and been given a chance, to really show his incredible talent for painting some breathtaking amazing pictures and is well on his way to being a earning good money from being a professional artist, he has found his niche, doing something he loves, and it has also helped his health improve to.

    You will find your niche, and discover what you can do - Its great you have your friend Amy to help you to.

    Have you considered doing a wheelchair sport? Maybe there is a local group, near where you live. Its a great way to meet other wheelchair users while also doing something fun.

    I'm only a part time wheelchair user for when there is a lot walking or I need to preserve my energy. There are many others on the Community Forum that will understand how you feel.

    If you have any questions or concerns anytime, feel free to either post on the Community forum or email the [email protected]

    The Scope helpline is excellent, and we will all do our part, to try and help you where we can.

    All the very best.


  • JenniferUJenniferU Member Posts: 124 Courageous
    Hi Lucy,

    Welcome to the community! 

    Your painting trick sounds great! We were looking for some crafting tips for disabled people. Maybe you could share it in our tips section, and any others you might have? You can look here: https://community.scope.org.uk/tips/activities-and-games 

    Jen

  • forgoodnesssakeforgoodnesssake Member Posts: 368 Pioneering
    edited March 2015
    Hi there...when you say you can't talk, do you have any kind of communication aid or spelling or symbol board?  If you don't then it must be incredibly hard for you and so you can ask for a special assessment by a speech and language therapist or a specialist communication aid centre.  There is more information here www.communicationmatters.org.uk.  My son is 17 and is a power chair user and has no speech and he has an electronic communication aid and a spelling board which really help.  It is still a slow process and frustrating at times but means he has been able to go to mainstream school and is in a local drama group (he played the alcoholic blackmailing butler in their latest production!)  All the best.
  • lucy1994lucy1994 Member Posts: 7

    hi noah. I tried wheelchair football. I didn't like it as I don't see myself in a wheelchair.

    Hi Jennifer. I paint with poles with paint brushes strapped to them. This gives me more support. Someone has to hold the poles with there fingers to support me. I will make a video and post it to your tips section.

    Hi forgoodnesssake. I use a communication aid to talk too. Sometimes I can get so frustrated with not being able to type as quick as others talk.
    Would your son be interested in emailing me so we can talk?

    Lucy

  • NoahNoah Member Posts: 430 Pioneering
    I look forward to seeing a video of how you paint with brushes attached to poles, it really sound quite ingenious, and I expect really effective to.  
  • ChelleMChelleM Member Posts: 44 Courageous
    Hi Lucy, How are you?
    I'm Michelle I'm 25 years old and I was born with Cerebral Palsy I use a wheelchair for long distances.
    I've recently started my own blog about living with Cerebral Palsy that you might find helpful you can find it www.seemenotcp.wordpress.com and I'll always be happy to have a chat anytime :) x
  • lucywebster1lucywebster1 Member Posts: 2

    Hi Lucy,

    I'm also Lucy, also 20, and also have CP! The similarities made me think I should say hi.

    In terms of CP, I use an electric wheelchair and generally wobble about a bit but that's about it.

    Your painting sounds really interesting. I did art at school but then discovered I was much better at writing, and now I am a freelance journalist (I know, I can't believe it either!). I'm at uni doing Politics and International Relations and, with the amount of work I have now, am pretty jealous that you've escaped education, but I love it really.

    I also used to get very frustrated but now I have the right care plan, independence and good friends I am pretty happy. Maybe there are some small changes you could make that would help? Sometimes you get stuck in a rut (well I do) and once you break out of it you're fine again. I'm sorry I can't say anything more concrete or useful.

    Anyway, just thought I'd say hi :)

  • lucy1994lucy1994 Member Posts: 7
    hi Michelle. I'm good thank-you. I would like to chat with you lots. I use a communication aid to talk. Do you have a communication aid to talk? Looking forward to hearing from you.
  • lucy1994lucy1994 Member Posts: 7
    hi lucy. Can you talk? Which uni do you go to? I would like to chat with you lots. Do you like uni?
  • lucy1994lucy1994 Member Posts: 7

    You can go on my facebook page to see my Art work,

    www.facebook.com/handmade.by.Lucy.Hopkins

  • lucywebster1lucywebster1 Member Posts: 2
    Hey, yes I can talk, I just have a slight speech impediment. I go to Warwick and I love it. What are you up to? :) oh, if you're interested you can see my blog at www.lucy-webster.com. Have you ever done any writing?
  • NoahNoah Member Posts: 430 Pioneering
    I have to say, I love your paintings, you have a real talent Lucy, My favorite is the one with the houses and boats, great use of colour. I'm sure you will go far, Have you approached any galleries about exhibiting your work?  or maybe thought about having your own exhibition.

    Noah 


  • KellyLynnKellyLynn Member Posts: 2
    Hi Lucy. I enjoyed reading your comment. I'm 33 and have CP. I often feel the same way you do. Keep searching and striving
    !
  • Richard_ScopeRichard_Scope Posts: 2,838

    Scope community team

    Hey Lucy
    Nice to meet you! I joined the forum to meet other people with CP, to hopefully learn from their experiences and impart some of my knowledge as well. I did not grow up with other disabled people and I felt out of the loop at times. Creativity is definitely a good release!
    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • Tasha76Tasha76 Member Posts: 11
    Hi Lucy I have mild cp and spina bifida acculta and struggle with walking I know how u feel I don't like being me and no one seems to get that either
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