help and support

Support from family and friends
Coping with Dystonia
Support groups in Australia and New Zealand
International groups
On-line support groups
Bulletin boards, chat rooms and forums
National organisations
Links for health professionals
Further reading

Dystonia can be a lonely and depressing condition. Outward symptoms can be a source of great embarrassment and frustration for the sufferer. The fact that there is no known cure for dystonia often adds to this distress. Many suffer personal problems resulting from changes to their body image. Self-esteem often lowers as individuals lose confidence in themselves and their ability to function as a normal human being. Some people are concerned about how the dystonia will affect their financial position, their normal routine and basic enjoyment of life. These issues are often made worse because so little is known about the disorder.

Support groups provide up-to-date information and moral support in a forum where people can share experiences with others in a similar condition. Inadvertently these groups often create more awareness of the particular disease process. It is not uncommon for a newly-diagnosed sufferer to attend at least one meeting session to obtain a greater understanding of their condition and learn new coping mechanisms.

We are in the process of setting up support groups up all over Australia. If you, or someone you know, would like to manage or attend a support group in your local area, please get in contact with us. Privacy laws prevent us from contacting people without their consent.

SUPPORT FROM FAMILY AND FRIENDS

Your family and close friends can support you in many ways, especially if they understand your condition. If you’d like us to send some information for them to read, send your request to Dystonia Australia and we’d be only too happy to fulfil it. It’s important that you share your feelings with those around you. This has been known to reduce the isolation that some individuals feel when they have a chronic condition.

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COPING WITH DYSTONIA

1. Accept your condition
Realise that your condition cannot be completely cured or resolved by medical treatment. Understanding your condition and learning more about it might be helpful in accepting what is happening to you.

2. Use a positive approach
Recognise that in order to move forward, you must develop a positive relationship with your body and the symptoms it is producing. You can do this by learning positive ways to cope with your condition.

3. It’s OK to grieve
Realise that parts of your life may never be the same again. Come to terms with the fact that these past experiences may now be over. Find new ways to make your life rewarding.

4. Realise your limitations
Don’t be so hard on yourself when things don’t go the way you’d like them to. Realise, that like all individuals, you have limitations too. Humans make mistakes and it might take a few more mistakes before you develop the skills you need to deal with your condition properly and live as well as you can.

5. Share coping mechanisms
If you develop a new way of coping, try sharing it with others in a similar position. By helping another person you’re also helping yourself.

SUPPORT GROUPS IN AUSTRALIA & NEW ZEALAND

The Dystonia Support Group of Cairns
Contact: Sue Bayliss
Ph: (07) 4032 4033
Email: s.j.bayliss@bigpond.com.au

Blepharospasm Australia (online support group)
http://bebaustralia.westernwebdesign.com.au/index.html

WA Blepharospasm Support Group
Contact: Lesley Reynolds
Email: lesnev@bigpond.com

Victorian Blepharospasm Support Group
Contact: Elizabeth Foster
Ph: (03) 9587 2326
Royal Victorian Eye & Ear Hospital
Ph: (03) 9929 8536
Fax: (03) 9663 7203
Email: elizabethfoster@bigpond.com

NSW Blepharospasm Support Group
Contact: Stephen Bradley
Mobile: 0408 232 338
Email: tangles60@bigpond.com

Spasmodic Dysphonia
Contact: Cynthia Turner
Ph: (02) 9411 2424
Email: cynthiat@romtech.com.au

Speech Pathology Department
St Vincent’s Hospital
Victoria Street
DARLINGHURST NSW 2010
Ph: (02) 8382 3372
Fax: (02) 8382 3687

Speech Pathology Department
Royal Victorian Eye and Ear Hospital
PO Box 139
EAST MELBOURNE VIC 3002
Ph: (03) 9929 8223
Fax: (03) 9663 7203
Email: ayorston@rveeh.vic.gov.au

Speech Pathology Department
Princess Alexandra Hospital
Ipswich Road
WOOLLOONGABBA QLD 4102
Ph: (07) 3240 2314
Fax: (07) 3240 2900

Speech Pathology Department
Queen Elizabeth Hospital
28 Woodville Road
WOODVILLE SOUTH SA 5011
Ph: (08) 8222 6723

Speech Pathology Department
Royal Perth Hospital
Wellington Street
PERTH WA 6001
Ph: (089) 224 2197
Fax: (089) 224 3511

Australian Spasmodic Torticollis Association (ASTA)
Contact: Laraine McAnally
Ph: (02) 9845 7447
http://www.asta.asn.au/

NZ Dystonia Patient Network Inc
Christine Blackler
National Coordinator
PO Box 4
Waikanae, Kapiti Coast, 5250, New Zealand
Ph/Fax: (04) 904 3323
Email: chris.blackler@paradise.net.nz
http://dystonia.org.nz

Info Line
Alison Fitzpatrick
Auckland
Email: alisonfitzpatrick@yahoo.com.au

INTERNATIONAL GROUPS

Dystonia Medical Research Foundation (DMRF), Chicago USA

WE MOVE (Worldwide Education & Awareness for Movement Disorders) New York, USA
[information on dystonia]

Subscribe to WE MOVE news

Care4dystonia, Inc.

Benign Essential Blepharospasm Research Foundation (BEBRF), Texas USA

National Spasmodic Dysphonia Association, Chicago USA

National Spasmodic Torticollis Association, California USA

Spasmodic Torticollis/Dystonia Inc (WI, USA)

Bachmann-Strauss Dystonia & Parkinson Foundation (New York, US).

Dopa-responsive Dystonia Central

EDF European Dystonia Federation

Osterreichische Dystonie Gesellschaft (Austria)

Belgische Zelfhulpgroep Voor Dystoniepatienten (Belgium)

Hrvatska Grupa Za Istrazivanje Distonije (Croatia)
Email: mrelja@mef.hr

Dansk Dystoniforening (Denmark)

Suomen Dystonia-Yhdistys (Finland)

Association des Malades Atteints de Dystonie (AMADYS) (France)

Ligue Francaise contre la Dystonie (LFCD) (France)

Deutsche Dystonie Gesellschaft e.V. (Germany)

Dystonia Ireland

Associazione Italiana per la Ricerca sulla Distonia (ARD) (Italy)

Nederlanse Vereniging van Dystoniepatienten (Netherlands)

Norsk Dystoniforening (Norway)

Associacao Portuguesa de Distonia (Portugal)
Email: gouveiacarvalho@clix.pt

Asociacion de Lucha contra la Distonia en Espana (ALDE) (Spain)

Asociacion de Lluita contra la Distonia a Catalunya (ALDEC) (Spain)

Svensk Dystoni Forening (Sweden)

Schweizerische Dystonie-Gesellschaft (SDG) (Switzerland)

Association Suisse contre la Dystonie (ASD) (Switzerland)

Associazione Svizzera contro la Distonia (ASD) (Switzerland)

The Dystonia Society (TDS) (United Kingdom)

Action for Dystonia, Diagnosis, Education and Research (ADDER) (United Kingdom)

ON-LINE SUPPORT GROUPS

Spasmodic Dysphonia Support on the Internet

Blepharospasm Australia

International Dystonia On-Line Support Group

Including:

Information for parents whose children have dystonia

“Ride It Out” Young People's E-mail Pen Pal Club

Transcripts of Dystonia Symposiums

BULLETIN BOARDS, CHAT ROOMS & FORUMS

Bulletin Boards for dystonia, spasmodic dysphonia, blepharospasm and musicians with dystonia

Blepharospasm Bulletin Board

WE MOVE chat rooms for Dystonia, Essential Tremor, Musicians with Dystonia, Parent-to-Parent, Spasmodic Dysphonia, Tardive Dyskinesia

Spasmodic Torticollis community forum

NATIONAL ORGANISATIONS

Medtronic movement for life website

Medicare & other health services

Health Insurance Commission

community.gov.au - Information and services for Australians

Centrelink - For services specific to carers and the disabled

Department of Family and Community Services - Payments and Allowances for people with disabilities, families and carers

Australian Human Rights and Equal Opportunity Commission - Disability Rights

Women With Disabilities Australia (WWDA)

National Industry Association for Disability Services (ACROD)

Self Help Queensland
Email: qnosho@gil.com.au

Carers Australia

Department of Caring and Ageing - Information about community and residential care services in Australia

Commonwealth Carelink Centres - Your link to living independently

Independent Living Centres:

New South Wales

Queensland

Western Australia

South Australia

Tasmania

Australian Capital Territory

beyondblue - the national depression initiative

depressioNet

Department of Health & Ageing - What is depression?

Genetic Counselling in Australia

Association of Genetic Support of Australasia (AGSA)

Speech Pathology Australia

Australian Physiotherapy Association

Understanding Parkinson's Disease

Parkinson’s Australia

LINKS FOR HEALTH PROFESSIONALS

Virtual Neuro Centre

Movement Disorder Virtual University

Subscribe to E-Move

Movement Disorder Society, Milwaukee USA

National Health and Medical Research Council

Therapeutic Goods Administration

The Merck Manual

Brain Foundation

Australian Association of Neurologists

World Federation of Neurologists

The International Steering Committee of Movement Disorder Nursing Societies

PubMed (National Library of Medicine) USA

National Organisation for Rare Disorders (NORD) USA

National Institute of Neurological Disorders and Stroke (NINDS) USA

Human Genome Project Information

FURTHER READING

Diagnosing idiopathic dystonia: must it take so long? Anne T Powell, John W Bidewell and Annette C Walker, Australian Health Review Vol 18, No.3, 1995

Spasmodic Torticollis: The Patient’s point of view Paper presented by Anne Powell, Associate Professor, UWS Nepean. 30th March 1995

What’s wrong with your voice?: The Story of Spasmodic Dysphonia in Australia Don Edgar PhD

What we still don’t know about spasmodic dysphonia Christy L Ludlow PhD NSDA Quarterly Report Volume 3. No. 3 Summer 1994

Speechless – Living with Spasmodic Dysphonia, published by the National Spasmodic Dysphonia Association in collaboration with Dot Sowerby, Jean Newcomer, and Betty Schonauer

Spasmodic Dysphonia: Myths and Facts Francis J Freeman PhD, Michael P Cannito MS, Terese Finitzo-Hieber PhD, Elliot Ross MD c1990

When Botox® doesn’t work Robert W Bastian MD, Professor of Otolaryngology/Head and Neck Surgery, Loyola University, Chicago NSDA Newsletter, January 2001

Longitudinal experience with botulinum toxin injections for treatment of blepharospasm and cervical dystonia Joseph Jankovic MD and Kenneth S Schwartz PA NEUROLOGY 1993:43:834-836

Acute and chronic effects of botulinum toxin in the management of blepharospasm (Updated August 1999) Jonathon J. Dutton, MD PhD, The Duke University Eye Center, Durham, North Carolina.

“Thank You for Asking”: A response-resource Coping Book Valerie F Levitan PhD, Published by the Dystonia Medical Research Foundation, 1998

Holding the Hope: A Parent’s Guide to Living with Dystonia 2nd Edition Karen K Ross, PhD, Published by the Dystonia Medical Research Foundation, 1996

The Disease That Distorts by Eugene Smith, Published by Peanut Butter Pub, 1997, ISBN: 0897166213

I’m Moving Two: A Poetic Journey with Dystonia by Beka Serdans, Published by Xlibris Corporation, 2000 ISBN: 0738828459

Surviving Dystonia by Carmine L Petrangelo, Published by Carmine L Petrangelo, 2002, ISBN: 0972371109


 

ON-LINE SUPPORT
“The most extensive support system is the network of concerned patients who participate in support groups and international foundations that promote education and research on dystonia. This is supple-mented by increasingly easy access to patient support materials on the World Wide Web. The importance of this type of support cannot be under-estimated.”
[Parkinson’s Disease and Movement Disorders, Third Edition (Chapter 26, edited by Mitchell F Brin)]

Go to our Online Support section where you'll find a number of these resources listed.