How will it affect my life? Expand You may need to find ways to adapt and might have to learn new ways to complete everyday tasks. However, it is possible to live well with the condition and Dystonia UK is here to support you through all stages including initial onset, diagnosis, finding treatment and beyond. You may find these coping techniques helpful: Press your fingers against the temples, end of nose or other parts of your face – you need to find the spot that suits you Use distraction techniques: taking a very deep breath, chewing gum, whistling, humming, sucking on a straw, singing, reading aloud, or pinching yourself Use relaxation techniques in a dark place Put your head back, close your eyes or look down rather than trying to look ahead Block out bright light by wearing a hat or visor. Wear wraparound sunglasses outdoors and tinted lenses indoors.
Payroll giving Expand If you’re paid by PAYE you can ask your company if they can set you up with Payroll Giving. It’s an easy way for you to give regularly to us. Every time you are paid, a donation amount of your choice is taken from your pay before tax is deducted. So, if you pledge to donate £5 per month, it will only cost you £4 on basic tax rate or £3 on the higher rate. As donations are deducted before tax is calculated, it is one of the simplest and tax-efficient ways of giving to us. Your regular contribution will mean that we can plan well into the future and make sure we provide the best services for people affected by dystonia. If you would like to donate in this way, please contact your company's payroll department and ask for the relevant form. What’s great about it? No extra cost to you No extra hassle for you Tax-efficient Increases the regular support for Dystonia UK helping us plan into the future
Match giving Expand If you are taking part in an event or fundraising in the office, your company might ‘Match Give’ any money you’ve raised. For example, they may offer for every £1 you raise to also donate £1. You can add this onto your fundraising total giving your donations an amazing extra boost! To find out whether your company has a ‘Match Giving’ scheme you will need to enquire with them. What’s great about it? Extra motivation for a challenge you might be taking on No extra cost to you Offers your company a chance to give back to the community Increases the support for Dystonia UK
Date and times Expand The conference will be held over two days, Friday 25th and Saturday 26th of September 2020. Each day will have two sessions: Morning sessions: 9:30am: pre-recorded presentation made available to attendees 11am: live Q&A starts on Zoom 12pm: networking starts on Zoom 1pm: session closes Afternoon sessions: 1:30pm: pre-recorded presentation made available to attendees 3pm: live Q&A starts on Zoom 4pm: networking starts on Zoom 5pm: session closes
Programme Expand Campaigning for Change Friday 25th September 2020, morning session One of our roles as a national organisation is to magnify the voice of dystonia patients and to raise awareness. Much of our work in this area is facilitated by Neurological Alliances from across the UK. Policy experts will be sharing their thoughts on neurology care and how we represent the community to continue pushing for more awareness and change at a governmental level. Main speaker: Georgina Carr, Chief Executive of Neurological Alliance England Panellists: Tanith Muller, The Neurological Alliance of Scotland David Galloway, Northern Ireland Neurological Charities Alliance Rebecca Brown, Welsh Neurological Alliance Mental Health Matters Friday 25th September 2020, afternoon session It has long been suggested that dystonia is “all in your head” and while we know that not to be true, it is a fact that any long term chronic condition can have an effect on your mental health and we are inviting specialists in the field to come and have an in depth conversation about how you can look after your mental health, especially in these incredibly stressful times. Main speaker: Professor Emeritus Marjan Jahanshahi, UCL Institute of Neurology Panellists: Mandy, patient speaker Nick, patient speaker The Future of Neurology Saturday 26th September 2020, morning session The future is always uncertain but following the events of the last few months it seems even more so. We’re asking leading clinicians their thoughts on the future of neurology. Clinicians from across the country will be sharing general updates on the NHS, digital innovations such as telemedicine and how their trusts have been impacted. Main speakers and panellists: Dr Peter Moore and Dr Richard Ellis, The Walton Centre Dr Eoin Mulroy and Professor Tom Warner, UCL Institute of Neurology Dr Jean-Pierre Lin, Evelina London Children's Hospital Dr Kathryn Peall, University Hospital of Wales Know Your Rights Saturday 26th September 2020, afternoon session In partnership with Disability Rights UK we will be sharing advice on a broad range of topics, including the PIP process, your employee rights, and how to navigate the educational system. We know how stressful it can be having to deal with these situations and this session will give you practical tools and tips to help guide you through what can be a difficult process. Main speaker: Michael Paul, Disability Rights UK Panellists: Gemma Stevenson, Sky Sports journalist Tully Kearney, World Championship Gold Medallist and Paralympian
Ticket prices Expand You can purchase a full conference ticket (includes all four sessions) Price for full conference ticket per person: £40 Alternatively you can purchase each session individually Price for each session ticket per person: £10 Dystonia UK members - please enter your member discount code at the checkout to receive a 20% discount on tickets and merchandise. Tickets are sold on a per person basis. We are operating an honour system and we ask that if more than 1 member per household will be attending that you purchase individual tickets (even if you are sharing a screen).
How do I book my ticket? Expand Each session has limited capacity so please do ensure you book early to avoid disappointment. You can book your tickets here.
How do I access the conference? Expand All you need is a computer/laptop, internet connection and a pre-purchased ticket. Once you've purchased a ticket you can find all the information you need for the day in your 'Welcome to Dystonia Matters Digital' email.
What does my ticket include? Expand Your ticket includes: a digital welcome pack access to the live event
How can I find out which UK hospitals or clinics near me treat dystonia? Expand Head to our treatment centres page. Use the map of services on the website run by the British Neurotoxin Network.
Is there financial support for people with dystonia? Expand Yes. If you or someone you care for are unable to work or have other difficulties or needs because of your dystonia you may be eligible for support. The type and level of support will depend on your personal circumstances.
Why should I join Team Dystonia UK as a member? Expand Ultimately you should join us if, like us, you think Dystonia Matters. Our members join for a whole host of reasons including: to feel part of the community to support others living with dystonia to receive our 'Dystonia Matters' magazine regularly to set up a regular donation easily to show support of a loved one
What are the symptoms? Expand Symptoms of functional dystonia include: a limb fixed in an abnormal position intermittent attacks of abnormal postures Stress and anxiety are known to exacerbate the symptoms.
How do I know what size to buy? Expand Our clothing is unisex and available from Small to Extra Large. Recommended size chart for women UK Size Recommended Size 8 - 10 S 12 - 14 M 16 L 18 XL Please see the size charts below for the measurements provided by the manufacturers. Running vest S M L XL 1/2 Chest (cm) 44 48 52 56 Body length (cm) 67 70 73 76 T-Shirt S M L XL Chest (cm) 89-91 97-102 107-122 117-122 Hoody S M L XL 1/2 Chest (cm) 51 56 61 65 Body length (cm) 67 70 73 76 Sleeve length (cm) 59 60.5 62 63.5
Are you called Dystonia UK or The Dystonia Society? Expand We are Dystonia UK! Originally established in 1983 as The Dystonia Society, by a small group of people living with dystonia, we rebranded in 2019 to reflect the growing needs of our community. Dystonia UK is the operating name of The Dystonia Society. The Dystonia Society is registered as a charity in England and Wales (1062595) and in Scotland (SC042127).