North Wales

About the group

This group was set up in 2013 as part of the North Wales & Shropshire group but split into two in 2018. It meets to give members an opportunity to meet for support and a chat with refreshments.The group meets 3/4 times a year in Llandudno. The group meets to offer support and share experiences and ideas, refreshments are provided. The group does try to get speakers (suggested by members) when they can. There is a small suggested donation to cover the costs of the meeting. The group is organised by 2 volunteers (1 coordinator and 1 treasurer) with support from members.

Future meeting dates

Click here to see when the group is next meeting.

Group Contact

Group Contact Name:	Moira Gleed
Group Contact Number:	0845 899 1060
Group Contact Email:	[email protected]

Please remember all our support groups are organised and run by volunteers. Please bear this in mind when getting in touch with the group contact.

Calls cost 5p per minute plus your phone company's access charge.

Please note the above contact details are for information about the local group only. If you want information about dystonia and its treatment or to discuss how dystonia is making you feel then you should contact the Dystonia Society helpline on 020 7793 3650 or [email protected]

Latest

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Dystonia Europe Survey

Your personal dystonia experience and input can benefit the dystonia community today and in the future.
Hampshire East DS Group Meeting 11 August 2018

Local support group meeting

North Shropshire Borders

This group was set up in 2013 and meets to give members an opportunity to meet for support and a chat over refreshments. They meet 3/4 times a year.
A.D.D.E.R.

ADDER is a north east of England charity which offers support and guidance to patients with dystonia or other similar conditions and their loved ones.
Bournemouth Eye Hospital

The Blepharospasm Group at Bournemouth Eye Hospital is an affiliated group.
North West & Midlands Group for dystonias affecting speech, eating & swallowing

This is a condition-specific group for support with dystonias affecting speech, eating and swallowing.
Younger Adults Group

Set up in 2013, this group is for younger adults with all forms of dystonia. The group meets virtually through a closed facebook page that gives its members the opportunity to share experiences and support one another.
Northern Blepharospasm

This condition-specific group was set up in 2011 and is for all those with Blepharospasm, meige, hemi-facial spasm and their carers who live in the North of England.
Voice Group

This group was set up in 2012 and is for all those in the UK who is affected by voice dystonia. At present the group meets virtually through a closed facebook page and offers support and an opportunity to share experiences.
Northern Ireland

This group was set up in 2010 and meets to give members an opportunity to get together for mutual support, refreshments and a chat.
South Wales

This group was set up in 2012 and meets to give members an opportunity to hear speakers and meet for a coffee and chat. The group meets 3/4 times a year in a variety of venues.
Edinburgh

This group started in 2013 and holds meetings every two months, giving members an opportunity to share their experiences of living with dystonia, their current treatments, concerns, tips and tricks to dealing with dystonia amongst other things.

More detail on tremor

Many people with dystonia experience head shake especially if the dystonia is affecting their neck. People often ask us about the difference between head shaking caused by essential tremor and that caused by dystonia. In this article Dr Marie-Helene Marion explains what the differences are and how neurologists tell if it is dystonia or not.
Blinking and eye problems

Most abnormal blinking or twitching of the eye clears up quickly - within a few hours of when the symptoms appear. If the symptoms do not go away one possible cause is eye dystonia.
Tremor

Tremor is an uncontrollable shaking or oscillation of a part of the body. Dystonic tremor is a type of tremor which occurs in conjunction with dystonia.
Foot dystonia

Foot dystonia is uncontrollable and often painful muscle contractions in the foot which causes a twisting or turning in of the foot. Foot dystonia is believed to be caused by incorrect messages from the brain to the muscles in the foot or lower leg.
Oromandibular dystonia

Mouth, tongue or jaw dystonia (the medical term is Oromandibular dystonia) is characterised by forceful contractions of the face, jaw or tongue. It can cause difficulty opening or closing the mouth, often affecting chewing and speech.
What is dystonia?

Dystonia is the term used to describe uncontrollable and sometimes painful muscle spasms caused by incorrect signals from the brain. It is estimated to affect at least 70,000 people in the UK. There are a large number of different types of dystonia which affect people in widely differing ways. Unfortunately there is not yet a cure.
Neck dystonia

Neck dystonia (the medical name is cervical dystonia, or sometimes spasmodic torticollis) is uncontrollable and often painful muscle contractions in the neck which cause awkward postures and discomfort. The head generally pulls to one side, backwards or forwards.
Blepharospasm

Eye dystonia (the medical term is Blepharospasm) is uncontrollable and often painful muscle contractions around the eye. Symptoms of eye dystonia may include excessive blinking and involuntary closure of the eyelids.
Hemifacial spasm

Hemifacial spasm causes the muscles on one side of the face to contract. In its mildest form this may cause no more than a slight inconvenience, although the symptoms may still be disfiguring and socially embarrassing. In more severe cases, the contractions may interfere with vision, since the other eye is usually unaffected, it rarely causes loss of sight.
The role of muscles in neck dystonia

The purpose of this article is to give a brief explanation of how some of the muscles in the neck can cause the abnormal movements and positions seen in neck dystonia.