It’s Dystonia Awareness Month 2019 | A time to spread the word!

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 awareness of #Dystonia.

• Share our  Dystonia Awareness Slide 
• Have a Dystonia awareness display at a pharmacy or chemist
• 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 Newsletters
• 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 Hospital or Clinic to add information on the Dystonia awareness month on their medical display screen
• Ask networks to share on their events page or Calendar 
• Share link to the ADSG  Dystonia Awareness Video 
• Make it the month to donate to Dystonia research or to a cause relating to Dystonia

Follow updates and share awareness posts directly from our Facebook and Twitter page! 

ADSG Quarterly Review August 2019

Have you missed Global Dystonia Updates and Information? 

Awareness Events 

⇒ National Pain Week
Championing the needs of Australians living with some form of chronic pain (including those with Dystonia). Check out the results of the National Pain Survey 2019! It explains the needs of people living with chronic pain.

⇒ Exercise Right Week
Encouraging Australians to be more active, but to help people understand where to find the right advice when it comes to exercise.

⇒ National Volunteer Week – Volunteers are “Making a world of difference”
ADSG would like to acknowledge and thank our members and the community in helping to raise awareness of Dystonia as well as other volunteers who work tirelessly to make a difference in people’s lives.

Special Announcement! Happy 8th Birthday to ADSG! 2 July 2019

The group has grown over the years and an appreciation to all for their support. If you would like to view a brief history of ADSG view our slide here → ADSG SLIDE

Upcoming Events and Meet ups!

⇒ Jeans for Genes Day: 2 August 2019
Supporting children with genetic diseases

⇒ Be Medicinewise Week: 19–25 August 2019
 Understanding and communicating about medicines

⇒ Speech Pathology Week: 25-31 August 2019
Communicating with confidence!

⇒ CPEC Healthy Mothers Healthy Families: 31 August 2019
Free workshop to learn how to create a healthy lifestyle that fosters your own health and wellbeing alongside a happy and healthy family life.

For more upcoming events please visit our ‘Events’ page.

⇒ Get ready for Dystonia Awareness Month all through September
Do not forget to share our awareness posts!

Presentations and Videos

⇒ Dystonia Europe
26th Annual Conference & D(ystonia)-DAYS 2019

⇒ International Essential Tremor Foundation/NSDA
Teleconference recordings & includes understanding and Treating Vocal Tremor and Spasmodic Dysphonia

Information and Articles

⇒ NSDA – Understanding Spasmodic Dysphonia Handout
⇒ NSDA – Voice Therapy Exercises
⇒ DMRF – What is Lower Limb Dystonia?
⇒ A Surprising Use for Botox: Helping People Regain Their Voices
⇒ Dystonia Europe – DBS Patient Case Study
⇒ Mass. Eye and Ear Communications – Fact or Fiction? 4 Things To Know About Spasmodic Dysphonia
⇒ Brain & Life Magazine – How to Fight Fatigue: Fatigue is a troubling symptom of many neurologic conditions
⇒ Brain & Life Magazine – Questions to Ask About Depression
⇒ NPS MedicineWise – When should I take my medicines? A common question posed by patients, especially when starting a new drug
⇒ DMRF Canada – Focus On: Childhood Dystonias
⇒ DMRF – What is Myoclonus Dystonia (M-D)?
⇒ DMRF – Dystonia (Frequently Asked Questions)

Research News

⇒ Uni of Sydney – Complete this Survey! How Do Individuals with Chronic Dysphonia Cope?
⇒ Dystonia Europe – Complete this Survey! Dystonia – Rare or not?
⇒ Deakin University – Brain mapping study could pave way to treat neurological disorder
⇒ Taylor & Francis – Visual compensation in cervical dystonia
⇒ Springer – Consensus Paper: Experimental Neurostimulation of the Cerebellum
⇒ PhD student Meredith Moore – What I Learned from Surveying 471 People with Voice Disorders
⇒ Dystonia Medical Research Foundation – Promise & Progress
⇒ Tremor and Other Hyperkinetic Movements – Neuropathology of Dystonia

Updates for Noting

Medicare Benefits Schedule (MBS) Review Taskforce – Report by the Neurosurgery and Neurology Clinical Committee

The MBS review Taskforce has made recommendations to the Government and was endorsed. The report included a new item proposed – Botulinum toxin for focal dystonia. However in order for the new item Botulinum toxin for focal dystonia to be listed on the MBS, assessment by the Medical Services Advisory Committee (MSAC) is still required. This sounds promising and ADSG will monitor the progress of this. The Implementation Liaison Group (ILG) for Neurology and Neurosurgery will hopefully also have a consumer representative to support the implementation process.

The final report or recommendations will be added to the MBS review webpage. The revised report has the ‘non-spasmodic’ term removed after ADSG contacted the MBS review team. This will ensure that some patients are not being excluded from reimbursement for effective and appropriate treatment, especially patients with Focal Dystonia.

Links to further details
⇒ Draft Report from the Neurosurgery and Neurology Clinical Committee
⇒ Government response to recommendations of the MBS Review Taskforce

Centre for Community – Driven Research (CCDR) Database 

The Centre for Community-Driven Research (CCDR) is a non-profit organisation bringing much needed change to the way we think about community engagement in health and research. Their vision is to facilitate meaningful connection between service providers, research organisations, the non-profit sector, practitioners, industry, government and the communities for which they provide a service or aim to benefit. This includes developing solutions to issues faced through community engagement.

One of the goals of the CCDR is for a more person-centric health sector globally through their core programs such as the PEEK. The aim is to conduct patient experience studies across several disease areas using a protocol that will allow for comparisons over time (both quantitative and qualitative components). CCDR also convened the Australian Patient Organisation Standing Committee (APOSC) which was developed out of a need for leadership and to support the delivery of best-practice community engagement in health, while continuing to develop evidence in this field of practice. The purpose of the program is to provide a platform for community-based organisations to consider and make recommendations on matters of strategic importance, relevant to national health systems, that relate to patient engagement in health policy, research, health services, Health Technology Assessment and program development.

The CDDR database is a list of community organisations or groups that exist in Australia. You can search the database to find these networks. CCDR is in the process of adding groups that are listed on the ACNC, but as a second step they will identify other groups as well and include them to the database. They already have our details and we are grateful that they will include us to this list.

More information ⇒ https://www.cc-dr.org/au/

Financial Services Council – Genetic testing and Life Insurance

It was announced that Australians will be allowed to get up to $500,000 of life cover without disclosing an adverse genetic test result and came into effect on July 1.

Following extensive consultation with the life insurance industry and genomics community the Financial Services Council (FSC) approved Standard No. 11: Moratorium on Genetic Tests in Life Insurance. This means if you want to get a genetic test or take part in genomic research you do not have to share the results with your life insurer.

Further details ⇒ Genetic tests no longer a barrier to getting life insurance

Medicare rebate increases – Patient rebates for 176 General Practitioners

These changes were applied in July 2019 and include services such as health assessments, chronic disease management plans, and mental health services provided by GPs.

Further details ⇒ https://beta.health.gov.au/ministers/the-hon-greg-hunt-mp/media/1st-of-july-medicare-rebate-increases

Visit and like our social media pages!

ADSG Community Facebook Page
https://www.facebook.com/AustralianDystoniaSupportGroup/

ADSG Twitter Page
https://twitter.com/ausdystoniasg

 

ADSG Quarterly Review May 2019

Have you missed updates and information relating to Dystonia?
Read further for a recap!

Awareness Events

Voice Awareness Month and World Voice Day

Voice care and the importance of the voice in our everyday lives. This included awareness of Voice Disorders such as Spasmodic Dysphonia. Click links!

→ BBC Ideas video from the Rethinking disability – How to speak when you don’t have a voice

→ NSDA – Overview on Spasmodic Dysphonia by Dr Stacey Halum

→ World Voice Day – Be Kind With Your Voice: Top 10 tips!

Good Friday Appeal

Supporting or donating to care and research at the The Royal Children’s Hospital, Melbourne (RCH) → Donate to RCH Complex Movement Disorders Program!

World FND Week

Raising awareness about Functional Neurological Disorders (FND), a problem with the functioning of the nervous system and how the brain and body send and receive signals. 

→ FND Hope – Functional Neurological Disorder (FND)

→ FND – Poster

→ Functional Dystonia

World Parkinson’s Day!

Dystonia and Parkinson’s disease are movement disorders that are closely related. Around 40% of people with PD experience dystonia as a symptom.

→ Shake it Up Australia – Dystonia and Parkinson’s disease

→ EPDA – Dystonia motor symptoms

Brain Awareness Week

Increasing public awareness of the progress and benefits of brain research, including Dystonia research.

→ ADSG – What is Dystonia

→ Brain Foundation – Donate to Dystonia research

Swallowing Awareness Day

Bringing attention to swallowing disorders and to connect people with speech pathologists, the professionals who can help → Dysphagia: A difficult diagnosis to swallow!

Rare Disease Day

Raising awareness of rare diseases! Dystonia is a neurological movement condition which affects adults and children and is often not well known → Rare types of Dystonia. 

Upcoming Events and Meet ups!

→ Parkinson’s and Movement Disorder Patient and Carer Information Session – 13 May 2019

→ SA Dystonia Support Group Social Meet-Up – 26 May 2019

Presentations and Videos

Click links to view!

→ Suzanne Bayliss Talk | Oh Sing with Broken Voice My Dystonic Body

→ DMRF – DBS for Dystonia Part 1

→ DMRF Canada | Webinar for Parents of Children and Teens with Dystonia

→ DMRF – Solving the Dystonia Puzzle

→ Movement Disorders Clinical Practice – Video Abstract

Information and Articles

Click links to read!

→ DMRF – Dystonia Dialogue Newsletter Spring 2019

→ Parkinson’s UK – How to manage foot problems related to your Parkinson’s

→ GMA – Selma Blair, an actress reveals she has Multiple Sclerosis (MS) and suffering from spasmodic dysphonia

→ Global Dystonia Registry – supporting future dystonia studies, including clinical and research trials, through the collection of data on persons affected by dystonia

→ nzhearald – Why Kiwi hitmaker Jenny Morris can’t sing anymore

→ DMRF – Dystonia: Common Misunderstandings

→ Brain & Life Magazine – Ease Awkward Social Situations

Research News

Click links to direct you to papers!

→ Cochrane – Deep brain stimulation for people with involuntary posturing, or dystonia

→ BMC Journal of Clinical Movement Disorders – Review Medical treatment of Dystonia

Updates for Noting

Medicare Benefits Schedule (MBS) Review Taskforce – Report by the Neurosurgery and Neurology Clinical Committee

The MBS review Taskforce has made recommendations to the Government and was endorsed. The report included a new item proposed – Botulinum toxin for focal dystonia. However in order for the new item Botulinum toxin for focal dystonia to be listed on the MBS, assessment by the Medical Services Advisory Committee (MSAC) is still required. This sounds promising and ADSG will monitor the progress of this. The final report or recommendations will be added to the MBS review webpage soon. The revised report has the ‘non-spasmodic’ term removed after ADSG communicated with the MBS review team. This will ensure that some patients are not being excluded from reimbursement for effective and appropriate treatment, especially patients with Focal Dystonia.

Links to further details

→ MBS Review Taskforce reports

→ Recommendations to Government from the MBS Review Taskforce

Our Facebook has reached 2000 likes! Thanks again to everyone who has liked and shared our page. Let’s all continue to educate and help raise Dystonia awareness.

Dystonia End of Year Gathering

Come to our end of year gathering in Queensland!

This is a great opportunity to catch up in a relaxed environment. Partners, carers and family are all welcome. 

When: Sunday 25 November 2018 at 12 – 4pm 

Where: Beenleigh Tavern Function Room at 114 Distillery Road, Beenleigh, Queensland 

RSVP: By 15 November at ADSG@live.com.au or through our ‘Contact Us’ page with names and numbers to assist with the booking confirmation

Note: The food menu caters for special dietary requirements, including gluten free options

ADSG Quarterly Review November 2018

 Information and events that relate to Dystonia you have missed!

 

It was Dystonia Awareness Month in Sptember!
ADSG members provided quotes to raise Dystonia awareness and understanding.
Check out our poster! → It’s Dystonia Awareness Month 2018! A Time To Raise Awareness

Dave’s Dystonia Walk – Raised over $6000 towards Dystonia Research!  
One of our members competed in the Melbourne Half Marathon to raise dystonia awareness and raise funds for the Brain Foundation for research into #Dystonia.
Link to his page → Dave’s Dystonia Walk 14th October 2018

Others participated in the melbourne Marathon too! Well done to all of them! Link to article about Xabian Patterson, one of the participant’s → Xabian’s mammoth finish.

Drop the Jargon Day #dropthejargon 2018
A day to use plain language and not Jargon, technical terms or acronyms which make it difficult for people to understand and use information. We shared some acronyms relating to Dystonia in a poster with the definitions to help you! Link → Drop the Jarogn Dystonia Poster

Speech Pathology Week 2018 – Communication access is communication for all!
Dystonia can affect your voice, speech or swallowing. Link to more info → Speech Pathology Week Post 

Be Medicinewise Week 2018
It is important to discuss Dystonia related medications or complementary medicines with a doctor and pharmacist, especially why given and what side effects you should expect. Link to more info → Be Medicinewise Week Post

World CP Day Inforgraphic
Raising awareness and recognising those with dystonic CP and dystonia. Link → CP and Dystonia Infographic

Upcoming Events and Meet Ups

Healthy Mothers Health Families free day workshop – 8th December 2018
HMHF is a program for women seeking to achieve better health, wellbeing and empowerment for themselves as they manage family duties → Healthy Mothers Healthy Families | CPEC – The Cerebral Palsy Education Centre.

Queensland End of Year Gathering  – Sunday 25 November 2018
Further details and to RSVP → https://wp.me/P57Axa-1E

The short film ‘Dystonia’ is now available to view online!
True story of Margot Chiverton, an ADSG member. She was a highly successful musician, before she reluctantly left after developing Dystonia. Link → Short Film ‘Dystonia’

Benign Essential Blepharospasm Research Foundation 2018 Symposium
Seven formal presentations on topics relevant to blepharospasm patients and Q&A sessions.
Link → Videos from the 2018 Symposium 

The Rare Condition That Stole This Woman’s Voice on Studio 10!
“For people with SD, it takes great effort and strain to speak.” Link → Studio 10 Segment 

DBS Dystonia Patient Sketch Animation – Boston Scientific Link → Deep Brain Stimulation for Dystonia

→ Navigating Dystonia and Depression
Depression and anxiety are well-known challenges for many who suffer from any form of dystonia.

→ What’s it like to live with a voice disorder?
ABC RN segment about #voice disorders, including an interview with Louise Maher-Bale from the Australian Dysphonia Network who has #SpasmodicDysphonia.

→ A Turning Toe – A personal Dystonia story
“Pain in my left foot, for no apparent reason. This resulted in the toes of my left foot twisting upwards. At times my foot would also rotate, and a couple of times the whole leg ‘locked up’.

→ Dental Visits Made Easier
For many people with neurologic conditions, a visit to the dentist produces extra anxiety. 

→ Nature Reviews Illustrated PrimeView PDF
Epidemiology, mechanisms, diagnosis and management of dystonia. 

→ DMRF Promise & Progress Science Report
Myoclonus Dystonia Research Update, Technology Advancements in Deep Brain Stimulation and more! 

→ Treatment of Dystonia Ebook 
Provides an effective guide to this challenging group of disorders, offering an overview of the current and emerging treatment options for all manifestations. Treatments for the many forms of dystonia differ substantially in pediatrics and adults – both are covered in detail in this book.

→ MSD Manual Consumer Version – Dystonia
Dystonia is characterized by long-lasting (sustained) involuntary muscle contractions that may force people into abnormal positions—for example, causing the entire body, the trunk, limbs, or neck to twist.

→ Prevalence and incidence of rare diseases: Bibilographic data
Diseases listed by decreasing prevalence, incidence or number of published cases. Inlcudes Dystonia. The data published in the document are worldwide estimations, or European estimations if a worldwide estimation is not available.

→ Queensland Brain Institute – What is a neuron?
They are the fundamental units of the brain and nervous system

 

Drug utilisation sub-committee (DUSC) → Botulinum toxin for spasticity and dystonia: utilisation analysis Full Report PDF

The Drug Utilisation Sub Committee (DUSC) of the Pharmaceutical Benefits Advisory Committee (PBAC) assesses estimates on projected usage and financial cost for medicines. It also collects and analyses data on actual use (including in comparison with different countries), and provides advice to PBAC. The DUSC reviewed the utilisation of botulinum toxin type A supplied through the Pharmaceutical Benefits Scheme (PBS) for the treatment of spasticity in patients with cerebral palsy or following a stroke, and for spasmodic torticollis, blepharospasm and hemifacial spasm.

Centre for Genetics Education → Updated fact sheet on life insurance products and genetic testing in Australia
The Centre for Genetics Education has just updated its fact sheet on Life insurance products and genetic testing in Australia.

European Journal of Neurology → Dystonia: diagnosis and management
F1000Research Review → Recent advances in understanding and managing dystonia
National Spasmodic Dysphonia Association (NSDA) → Spasmodic Dysphonia Past Present and Future NSDA
Developmental Medicine and Child Neurology → Deep brain stimulation for pediatric dystonia: a meta-analysis with individual participant data 
International Parkinson and Movement Disorder Society → Resting‐state basal ganglia network codes a motor musical skill and its disruption From dystonia 
European Journal of Neurology → Spread of dystonia in patients with idiopathic adult‐onset laryngeal dystonia
International Parkinson and Movement Disorder Society → The Phenomenology of Functional (Psychogenic) Dystonia

Visit our Dystonia Research Page for trials and studies!

‘Voice Disorders – join the conversation’ Forum

‘VOICE DISORDERS – JOIN THE CONVERSATION’

Australian Dysphonia Network Event – Saturday 27th October 2018

» Are you interested in learning more about voice disorders research, treatments and management?

» Would you like to meet others with voice disorders or to have a friendly catch-up?

If so, then this is the forum for you! Click link to buy your tickets. Hurry before tickets run out!

» https://www.eventbrite.com.au/e/voice-disorders-join-the-conversation-tickets-47382650784

Includes morning, afternoon tea and lunch!

This one day event will provide an opportunity to hear from experts and learn what’s happening in the world of voice disorders research, treatments and management. Above all, you will meet other who share your experience and who understand life with a broken voice.

The program is now available and will provide both formal and informal opportunities to learn, catch up with others, to laugh and to exchange tips and strategies.The event is open to people living with any chronic voice disorder. We encourage you to bring your partner or friend because we recognise the impact that dysphonia has on relationships … this event will provide them a chance to meet others, exchange stories and feel supported. 

Source: Forum 2018 – Speakers Announced – Australian Dysphonia Network

Related links: Introducing the fabulous Voice Health Professionals and other Guest Presenters for upcoming forum » https://bit.ly/2QK2iC7

Dave’s Dystonia Walk 14th October 2018 – Dystonia Awareness Video!

This October, one of our members is going to compete in the Melbourne Half Marathon to raise awareness for sufferers of Dystonia. Having being diagnosed in March 2015 and undergoing Deep Brain Stimulation surgery in April 2017, Dave is now embarking on walking 21.1kms in this event to help raise funds for the Brain Foundation for research into Dystonia.

Please share his video about his brief journey with #Dystonia and undergoing deep brain stimulation #DBS.

Link to to follow this important cause » Dave’s Dystonia Walk 14th October 2018

Link to to donate to this cause » https://bit.ly/2rQKN9j

Related links: Walk aims to shake off debilitating disorder Dystonia – Mornington News Article

The short film ‘Dystonia’ is now available to view online!

This short film is the true story of Margot Chiverton, an ADSG member. She was a highly successful musician who performed in orchestras around the world, including the Adelaide Symphony Orchestra, before she reluctantly left after developing #Dystonia. Written and directed by Peter Chiverton. Starring Lydia Fay, Nathan Bolton and Charlotte Jakubowski.

If you would like to also read Margot’s story please click link » Living with Dystonia. 

Thank you for raising awareness Margot and Peter Chiverton! 

Click play to view film! 

It’s Dystonia Awareness Month 2018! A Time To Raise Awareness

We want Dystonia Awareness because……………

ADSG members have provided quotes to raise Dystonia awareness and understanding. We would like to thank them for their input! Please share link to this poster! Link: https://wp.me/p57Axa-24Z #DystoniaAwareness  

Seek permission to copy or use this poster

It’s ADSG’S 7th Birthday!

The Australian Dystonia Support Group has come a long way!

The Australian Dystonia Support Group (ADSG) was formed in 2011 by Lee Pagan who has  Adult Onset Generalised Dystonia which affects many muscles throughout the face and body. 

During my search for information, support and understanding, I discovered Dystonia websites and support groups. As I read about the devastation faced by many of the contributors, I realised that more support was needed in Australia, so the Australian Dystonia Support Group was created. Each day, I connect with people who cannot imagine living another day, suffering as they do, or others who are desperately trying to hold onto their previous existences and then having to face the grief of losing the life they once had. I sympathise and empathise with them, as I often find myself wondering how I will continue to wake each morning, knowing that life as I knew it has gone, and that my life will always involve this debilitating condition. There is no cure! I can only hope for a treatment that will give me a reasonable quality of life. Source: Lee Pagan’s Story → ‘Trapped’ 

Since then the group has grown from 4 people to approximately 700 people, now has another 3 admins who volunteer their time to run the group and also has expanded to include a website, Community Facebook and twitter page. In addition to this we:

→ Provide a closed online support group where members can share their experiences while offering a connection to others who live with similar challenges

→ Support gatherings as well as Dystonia information sessions or seminars

→ Provide Information relating to Dystonia and updates by other networks and contacts

→ Communicate with researchers in relation to Dystonia clinical trials which is then shared with members

→ Share flyers, posters and other publications to members, the community and clinics

→ Educate or raise awareness relating to Dystonia, including a yearly Dystonia Awareness Month in September

→ Necessary feedback is provided to networks and contacts to help them understand what is important to people with Dystonia and their families

The Group has come a long way with increasing community or public awareness, providing wonderful support to other Dystonia sufferers and also being in touch with Organisations, networks and researchers.

Congratulations Lee Pagan on an amazing achievement!

Related links: 

→ Interview with Dystonia sufferer, Lee Pagan, ADSG Founder!

→ Lee Pagan’s Story: Trapped!

→ ADSG Connecting and Supporting – A look back at 2017!