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2 recommendations and reviews from 1 person

Recommendations from The U.

• Referral from April 4, 2016
  

  Mandi W. asked:

  Hi ive been diagnosed with Dystonia and was wondering if there is any groups in or around the Liverpool u.k. area where I can go and talk to others about this. As I feel quite alone at the moment with no one to talk to about the way its affecting my life. Thanks in advance.

  

  The U. replied:

  Hi Mandi, We do have a group in the Liverpool area - the details are here on our website: http://www.dystonia.org.uk/index.php/living-with-dystonia/groups/15-living-with-dystonia/groups/180-liverpool-a-merseyside You might also find it helpful to give our Helpline a ring. They're open Mon-Fri, 10 am-4 pm and their number is 020 7793 3650.

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• Referral from November 12, 2015
  

  Mags H. asked:

  Hello everyone. A friend kindly pointed me in your direction, as I have a question about my 8 year old Son. Zak has profound and multiple disabilities, including Cerebral Palsy and Epilepsy. He recently (about 3 or 4 months ago) developed a bit of a 'chewing' thing. He is nil by mouth, totally tube fed,has no safe swallow and is completely non verbal, rarely even makes sounds. Anyway, this chewing is constant, quite loud and seems involuntary. There's a chance it is a sensory issue, but I've been reading up on 'neurological chewing' and came across a paper on 'involuntary chomping' associated with 'primary focal dystonia'...and wondered if anyone has any experience of chewing as a dystonic event. He is seeing his Neurologist on Monday, but wanted to get some opinions before we go. Much appreciated, Thank you, Mags.

  

  The U. replied:

  Hi Mags, we're really sorry we haven't replied sooner, we missed your post and have only just spotted it. You might want to give our helpline a call for info and support. You can call them on 020 7793 3650 or email support@dystonia.org.uk They're open Mon-Fri 10 am-4 pm.

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