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Meeting people like me

Vix1925Vix1925 Posts: 1Member
edited August 2014 in Cerebral Palsy
I have very mild cerebral palsy due to complications at birth.
My parents never spoke about it growing up and so I learnt to hide it very well. Although that came with its own problems like being labeled the boring one amongst friends - I'd make excuses not to go ice skating, cycling, adventure grounds etc.
I guess I'm finding it harder to cope with as I'm getting older too. The emotional strain of not talking about my condition for 30 years and putting a brave face on things is taking it's toll. I feel like nobody understands me. I don't know anybody else like me. I would really like to meet any local (Gloucester) people around my age with mild CP. Someone has to understand me!

Replies

  • ScopeHelplineScopeHelpline Posts: 210Member Courageous
    Hi,
    Thanks for posting, we just wanted to let you know that Scope have Regional workers who are available to have a chat with about cerebral palsy and any issues surrounding this, and who might also know of local groups that you could contact.
    If you would like more information regarding a regional referral, please contact the Scope Helpline on 0808 800 3333 or email us on [email protected]

    Scope Helpline
  • NoahNoah Posts: 430Member Pioneering
    edited August 2014
    Well, you are in the right place, as many of us do understand what you are coping with. Well done for putting on a brave face all that time, yes I think quite a few of us learn very young to try and hide it well, as we are trying to fit in. The Scope help line is excellent, as is this forum for asking questions and sharing experiences. Hope you find something useful. For me its the friends that have stuck by me through thick and thin that keep me going, and they are not necessary individuals that have a disability. Recently I have met some amazing people that do have CP, and that has helped loads. Maybe try and involve yourself in some hobby, interest or sport groups.
  • NoahNoah Posts: 430Member Pioneering
    Just found this amazing website via the scope site, that you can use to find different clubs near you for sports, it is very inclusive and not just for wheelchair sports. You should take a look.

    http://wheelpower.org.uk/WPower/
  • redchicken43redchicken43 Posts: 48Member Pioneering
    I have had mild CP since birth and I am 45 now but I was very lucky from an early age where my parents refused to treat me any differently. At the same time they blocked out any discussion about my condition and never to this day have ever talked to me about it. This you might think is a strange therapy but made me also feel that I was alone at times. However, as a result of this I never really felt that I was different to everybody else and through shear determination in life I was able to get a job, meet my wife and have two children. These may be things that able bodied people would take for granted but for me it is more than I ever expected from life. My point really is that you are not alone in dealing with your condition and without a doubt you have probably gained a lot of strength over the years out of your one single weakness. Don't give up my friend and there are plenty of people here who you can talk to.
  • granniegrannie Posts: 1Member
    edited January 2015
    We have recently learned that our 23 month old grandson has Periventricular leukomalacia. We are in a difficult situation because we are the paternal grandparents and the parents, whereas they both have his interests at heart, they cannot tolerate each other, this makes communication about his condition very poor indeed. He is to start speech therapy next month and he gets some physiotherapy but only once a week. We want to do as much as we can to ensure that he has a comfortable life and develops as much as his capabilities will allow. To meet this we will be adding onto the NHS services with private care.
    We really need to know whether there is any fear of too much speech and language therapy or physiotherapy?
    His motor skills at the moment are that he doesn't walk or stand unaided. He crawls on his tummy but cannot hold his own weight. He has not got any words but makes lots of noises that we understand.
    We have looked at a couple of videos that show the Anat Baniel method does anyone know of a practitioner around the Staffordshire area?
    Thanks for any help
  • RockyRocky Posts: 76Member Listener
    Hi Grannie, I do understand how difficult it can be for grandparents to do the right thing without being too intrusive. Scope have information on Periventricular Leukomalacia which may help http://www.scope.org.uk/support/families/diagnosis/pvl
    Basically it is best to stick to mainstream therapies and treatments such as physiotherapy and speech therapy rather than pay a lot of money for alternative therapies. Each child is individual and Anat Baniel may have some beneficial effects or not. What suits one child will not suit another. It is very important before embarking on any therapy that you check out its efficacy and ensure claims are supported by clinical trials. It would be best to seek the advice of your grandson's doctor or paediatrician if you can. Additional speech therapy and physiotherapy would be fine but you would need to ensure that the practitioners involved with your grandson's treatment communicate with each other and have shared treatment plans and goals.
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