Dystonia Awareness Month – Thanks for Caring and Sharing!

ADSG Thank You

A BIG thanks to the ADSG community for caring and sharing during the Dystonia Awareness Month. We particularly thank those who shared their personal information and their stories, and also to those who donated to dystonia causes or research. Our goal is to continue to raise awareness, understanding and education which may ultimately lead to better treatments and possibly a cure.

It has made an enormous difference this year and certainly exceeded our expectations compared to last year!

This year we composed a Dystonia Awareness Slideshow which was added to our Facebook Community Page. It reached close to 14,000 people. What an outstanding achievement!


Dystonia Awareness Month! What you have missed so far!

Dystonia Awareness Month

Seek permission to copy or use this image

As the end of September grows near, there is still time to join in or be involved with raising awareness of Dystonia. Here are some ways you can help make an impact:

  • Share ou Dystonia Awareness Slide 
  • Leave Dystonia flyers or posters at a clinic or Hospital
  • Add a Dystonia article/story in the media or your Local Council and Community Health Service Newsletter
  • Share our website page and other Dystonia info on Facebook and Twitter

For further ideas click link → Dystonia Awareness Month Page

What you have missed so far!

Have you seen our Dystonia Awareness Slide? Click image to direct you to slide or this link → Dystonia Slideshow

dystonia awareness slide i

Throughout Dystonia Awareness Month we have been sharing slides with photos and info supplied by the ADSG members. Link → Photos and info

Have you seen our new Dystonia images? You can share link to them through our Facebook Community Page! Link → Dystonia Awareness Images

Make it your mission to donate to #Dystonia causes or research! During the #DystoniaAwareness Month it is an opportunity to donate to research, projects or causes relating to Dystonia. Click image to direct you to ‘Donate’ page or this link  Donate

Donate Dystonia

Keep an eye out for more during Dystonia Awareness Month!

Our Website        Find Us on Facebook          Follow us on Twitter   

It’s Dystonia Awareness Month – Spread the word!

It’s September and that means it’s #Dystonia Awareness Month! Please help us to create further awareness and understanding of this debilitating Neurological Disorder by sharing this link or post to the slide! #DystoniaAwareness

Visit our ‘Dystonia Awareness Month’ page for more tips to raise awareness! http://wp.me/P57Axa-y9

Dystonia Awareness Month slide – Seek permission to download to share slide, copy or use images.

Dystonia Awareness Month Slide

Dystonia Awareness Month Slide. Seek permission to copy or use images or slide


Speech Pathology Week – Communication access: Everyone gets the message!

Speech Pathology Week 2017

During Speech Pathology Week 2017 join the conversation about communication accessibility and help make sure “everyone gets the message”.

Participate on social media by using #SPWeek #Dystonia

Speech Pathology Week promotes the speech pathology profession and the work done by speech pathologists with the more than 1.1 million Australians who have a communication or swallowing disorder that impacts on their daily life. Communication is a basic human right and Speech Pathology Week seeks to promote this fact. 

Dystonia can affect your voice and the ability to speak

Dystonia does not only affect the larger body parts like arms and legs, depending on the type of Dystonia, it may also affect your throat, voice or vocal cords, impacting the person’s ability to speak and communicate. More information → Types of Dystonia.  

There are many techniques that could be used to help people with communication difficulties. Augmentative and Alternative Communication (AAC) is a term used to describe a variety of communication methods, which includes communication Apps.

→ Augmentative and Alternative Communication (AAC) Factsheet

 ACC Scope Handout and Communication apps 

More Information 

Tips for successful communication

 What is Communication Access? 

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Get Ready For Dystonia Awareness Month In September!

Dystonia Awareness Month 2017

Dystonia Awareness Month – Seek permission to use or copy this image

Further awareness of this Neurological Movement Disorder is the key to a future cure! Please help those affected by joining us and helping to spread the awareness of #Dystonia during September.

Visit our ‘recent news’ page for updates! If you would like to help spread awareness during the #dystoniaawareness month there are many ways you can achieve this. 

  • Have a Dystonia awareness display at a pharmacy or chemist
  • Leave Dystonia flyers or posters at a clinic or Hospital
  • Add a Dystonia article or story in the newspaper
  • Share information on Dystonia on a radio channel
  • Have a sausage sizzle at Bunnings or another venue and share information on Dystonia
  • Organise a public conference or event to raise awareness of Dystonia
  • Share website page and other Dystonia info on Facebook and Twitter
  • Ask a Hosptial or Clinic to add information on the Dystonia awareness month on their medical display screens
  • Share the ADSG Dystonia Awareness Video 
  • Make it the month to donate to Dystonia research or to a cause relating to Dystonia

Visit our Dystonia Awareness Page for more information and publications!

Free Parkinson’s & Movement Disorder Patient & Carer Information Session!

Parkinson's & Movement Disorders Information Session for Patients & Carers

Flyer Courtesy of Queensland Brain Institute – The University of Queensland

The Asia-Pacific Centre for Neuromodulation (APCN) part of the Queensland Brain Institute at the University of Queensland is hosting a free Patient/Carer Information session. All patients and carers living with Parkinson’s Disease, Dystonia, Essential Tremor and Tourette’s Syndrome are welcome. 

Date:       Saturday 2 September 2017 at 10am – 2pm

Venue:    Caloundra Power Boat Club, 2 Lamerough Parade, Golden Beach, QLD 4551

Note:      A light lunch will be provided

For more info or to register for the session please click on link provided.    

Click Link → https://qbi.uq.edu.au/event/session/4707 

For more upcoming events or support meet ups please visit our ‘Events’ and ‘Support Meetings’ Page.

#Dystonia #MovementDisorders #Parkinson’s #QueenslandBrainInstitute #DBS

It’s National Pain Week! Let’s Manage Pain!

National Pain Week: 24 – 30 July 2017 #NPW2017 #Dystonia

Dedicated to reducing the social and other barriers to living with chronic pain. Click on link provided for info, updates, conferences and resources!

➡ National Pain Week 

Dystonia can cause a range of symptoms including pain. Click link provided for more info.

➡ Dystonia and Pain

More Links relating to managing pain or coping with pain visit the Chronic Pain Australia website.

➡ Chronic Pain Australia 


It’s Our Birthday!


Today is a very important day for ADSG! It’s the day that Lee Pagan created our very special Australian Dystonia Support Group 6 years ago!

Happy Birthday Australian Dystonia Support Group

We have grown since the 2nd July 2011, we have now over 600 Members (including email Members) and have achieved so much in that time especially with increasing public awareness of Dystonia!

We also have our own Facebook Community Page: 

And also our very own Twitter Account: 

Many thanks goes to Lee Pagan, our Admins and also to all our Members for making the Group a safe place to come together to support each other, while sharing the good, the bad and the ugly. 

Be involved in a Dystonia study! Functional screening tests in Cervical Dystonia

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Do you have cervical dystonia and can walk without assistance?

The Physiotherapists at Westmead Hospital are conducting a study into walking and balance in people with cervical dystonia. They are looking for adults with cervical dystonia who can walk unassisted to attend 1 – 2 sessions with a physiotherapist at Westmead Hospital. During these sessions, participants will be asked to perform a series of walking and balance tests, and fill in some questionnaires. Results from this study will be used to help design new physiotherapy treatments for people with cervical dystonia.

Click on links to Study flyer and information sheet for further details.

Functional screening tests in cervical dystonia Flyer 

Participant Information Sheet Clinical Trial – Functional screening tests in cervical dystonia

Clinical Trial Contact: If you would like more information or are interested in joining the study please contact Physiotherapist and Associate investigator, Melani Boyce, on melani.boyce@health.nsw.gov.au or phone 0407 987 386.

This research project has been approved by the Western Sydney Local Health District Human Research Ethics Committee and permission has been sought by researcher for ADSG to add to website and social media.

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Battling Dystonia and a mission to raise awareness!

Newsbreak! Have you seen this Dystonia video? 

Lee Pagan, founder of the Australian Dystonia Support Group, was interviewed about her battle with Dystonia, along with young Athlete, Ryan Flinn, who cycled 5,500km from Perth to Sydney in a bid to raise awareness and funds to find a cure for Dystonia.

Dystonia is a neurological movement disorder which affects adults and children. It can affect any part of the body and causes muscles to contract or spasm. This may cause pain, tremors, twisting and other uncontrollable movements. Some forms of dystonia are genetic but the cause for the majority of cases is not known. Link – What is Dystonia?

Watch the Interview! Source: Fighting Flinn – Being Human by Lily Cardis. We would like to give a special thanks to Lily Cardis for helping us raise much needed awareness for Dystonia.


Lee Pagan


Read further for more about Lee’s Story – Battling with Dystonia!


Lee Pagan was initially diagnosed in 2009 with Blepharospasm, which is a Focal Dystonia involving the muscles around the eyes.


She has now been diagnosed with Multi-Segmental Dystonia, which means that she has 2 or more body areas affected by uncontrollable and painful muscle spasms and movements.

Lee had to give up her career as a teacher, and many aspects of the life she once knew – particularly her independence. Her husband even had to retire to support her at home and to drive her to the various therapy sessions and appointments.  

When Lee was first diagnosed she went searching for Dystonia information and support and discovered overseas Dystonia websites and support groups.

That is how the Australian Dystonia Support Group came into being.

The Australian Dystonia Support Group continues to grow and are able to connect with more people with Dystonia. They now have lunches, gatherings and meetings in most of the capital cities, and are finally able to meet other Dystonia sufferers, in person.

ADSG has a fabulous Admin team and now also have an Australian Dystonia Support Group Website, a Facebook Community Page, a Twitter Page and an Email Distribution list. These additions enable friends and family members to read and understand more about this condition. The members are also able to access more information and medical updates relating to this condition as well as connect with other members.

They also have ADSG cards and Awareness Materials that are distributed to Neurologists, Health Practitioners, Pharmacies, etc. These materials have helped people find their group but have also lead to more education and awareness.

Lee Pagan stated that Ryan Flinn, a pro cyclist who rode across Australia in two weeks is amazing and can’t thank him enough for his efforts to raise funds and awareness for Dystonia.

Some of the ADSG members, families and friends have also been involved in awareness and fundraising campaigns.

What the public should know to better understand this condition!

There is so little known about the brain and there is even less known about Dystonia. It is an extremely complex, inconsistent, unpredictable and often debilitating condition. It can be a condition on its own or a symptom of another condition. Each person displays unique symptoms and we all respond differently to treatments. There is no cure.

When you take all of that into consideration I think we mainly want people to understand that:

  • Because it is complex and Neurological (which means that the initial problem is in the brain not the muscle) – we can’t ‘fix’ our muscles and get better – there is no miracle fix, but we all hope to find helpful treatments that will give us some quality of life.
  • Some people with Dystonia may look alright but inside the muscles are misbehaving and they are really suffering. There are some who are unable to walk or talk, and require wheelchairs for mobility and assistive technology for communication.  We are all so very different in how we display which makes finding a successful treatment quite difficult and very individual.
  • Because it is inconsistent and unpredictable – We may be able to do something one day but will struggle to get out of bed or function on another.

“I am one of many Dystonia sufferers. We all hope to spread the word and to gain some recognition and understanding.” Lee Pagan.

Related Links: 

Lee Pagan’s Story – Trapped!

Interview with Dystonia sufferer, Lee Pagan, ADSG Founder!

Deep Brain Stimulation (DBS)

Dystonia Awareness Video