Hi, my name is donna_louise71!

donna_louise71
donna_louise71 Community member Posts: 4 Listener
in Start here and say hello!
Hi my name is Donna and I suffer from cervical dystonia, can anyone help please 

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  • janer1967
    janer1967 Community member Posts: 21,922 Championing
    Hi and welcome to the community Feel free to join in or ask any questions 
  • Cher_Alumni
    Cher_Alumni Scope alumni Posts: 5,715 Championing
    Hi @donna_louise71 and a warm welcome to the community from me :)  How are you doing today?

    I'm sorry to hear you have cervical dystonia.  I wasn't overly familiar with what that was, and looked at the Dystonia UK webpage about it which says:
    Cervical dystonia is a neurological movement disorder characterised by continuous or intermittent muscle contractions which cause abnormal, often painful, repetitive movements of the neck and head. The movements can lead to the head and neck twisting (torticollis) or being pulled forwards (antecollis), backwards (retrocollis), or sideways (laterocollis).
    That sounds really rough to live with, how are you managing?  Is this what you are looking for help with?

    I hope you have a lovely Friday and please do tell us a little more about how we can help to make things a little easier for you.
  • donna_louise71
    donna_louise71 Community member Posts: 4 Listener
    Good morning 
    yes I have cervical dystonia which is very painful, I can’t sit or stand straight, tremors are awful, which lead to like a epilepsy fit but I’m fully aware on what is happening around me. My whole body shakes which can last up to 5 hours, then I just sleep as it has totally wiped me out. I have been off work since April and I’m probably going to get dismissed through medical inefficiency.  I believe it’s a hidden disability, which I don’t understands I see the ad on ITV so I thought I would join to see if there is anyone else suffering like myself and hopefully get some advice. Many thanks Donna 
  • Ross_Alumni
    Ross_Alumni Scope alumni Posts: 7,611 Championing
    Hello @donna_louise71

    Welcome to the community, good to hear you saw the advert. 

    I'm sorry to hear about how much you are struggling with daily tasks and work, have you discussed these things with your GP and employer to see if there's anything they can do to help you cope?
  • donna_louise71
    donna_louise71 Community member Posts: 4 Listener
    Hi my doctor just keeps giving medication, which now doesn’t seem to have any effect. And I’m probably going to be dismissed by medical inefficiency. I understand that cervical dystonia isn’t a recognised disability, which I believe to be unfair as I am unable to have a normal daily routine, I struggle to shower/ bath and get dressed, everything is such an effort. I then get extremely stressed and my anxiety is high. Any ideas on who to cope would be greatly appreciated 
    many thanks 
    Donna

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