CPEC | Healthy Mothers Healthy Families – 31 August 2019

Are you a mother of a child/ young person with a disability? Do you have time for your own health and wellbeing?

Attend a free full day workshop provided through an Association for Children with a Disability and Healthy Mothers Healthy Families (HMHF) collaboration.

HMHF is a program for women seeking to achieve better health, wellbeing and empowerment for themselves as they manage family duties.

The workshop will cover:
• how to make positive changes to your health and wellbeing
• research findings and the shared wisdom of other mothers
• health information, tips and strategies
• services and supports

The workshop will be available for up to 35 mothers. HMHF includes access to a website and workbook and is an interactive and inspiring event!

For more information and to register for workshop please click link provided.
⇒ Healthy Mothers Healthy Families Workshop. 


Brain mapping study could pave way to treat neurological disorder | Deakin

A world-first study led by Deakin University has pinpointed the potential cause of a relatively common but largely unknown debilitating neurological disorder that shares similarities with Parkinson’s disease.

Lead researcher Dr Daniel Corp, a lecturer in Deakin’s School of Psychology, said the discovery of the parts of the brain that may cause cervical dystonia, an incurable movement disorder, could pave the way for a non-invasive, targeted treatment for the condition. Click source link to read more! 

Source: Brain mapping study could pave way to treat neurological disorder | Deakin

Consensus Paper: Experimental Neurostimulation of the Cerebellum | Springer for Research & Development

Source: Springer Creative Commons CC BY 

Paper Snippet

The cerebellum is best known for its role in controlling motor behaviors. However, recent work supports the view that it also influences non-motor behaviors. The contribution of the cerebellum towards different brain functions is underscored by its involvement in a diverse and increasing number of neurological and neuropsychiatric conditions including ataxia, dystonia, essential tremor, Parkinson’s disease (PD), epilepsy, stroke, multiple sclerosis, autism spectrum disorders, dyslexia, attention deficit hyperactivity disorder (ADHD), and schizophrenia. Although there are no cures for these conditions, cerebellar stimulation is quickly gaining attention for symptomatic alleviation, as cerebellar circuitry has arisen as a promising target for invasive and non-invasive neuromodulation. This consensus paper brings together experts from the fields of neurophysiology, neurology, and neurosurgery to discuss recent efforts in using the cerebellum as a therapeutic intervention. We report on the most advanced techniques for manipulating cerebellar circuits in humans and animal models and define key hurdles and questions for moving forward.
Click link to read more!

Source: Consensus Paper: Experimental Neurostimulation of the Cerebellum | Springer for Research & Development

Complete Survey! How Do Individuals with Chronic Dysphonia Cope?

Research Participants Needed – Australian Dysphonia Network

We are super excited … It’s H E R E …

Late last year the Australian Dysphonia Network funded a scholarship via the Dr Liang Voice Program to explore aspects of living with chronic dysphonia.

The study is being conducted by an Honours Student @ USyd and while the ADN has funded it, we have not been involved in any way in the design (so it will be exciting for all of us).

It is now live.. so it’s time to recruit. Have your say, and help shape the future of management of chronic voice disorders.

Follow this link to begin the survey!


NOTE: The study is open to individuals with chronic voice disorders aged older than 18 and must:

– Have dysphonia that is chronic; with the condition lasting at least 3-4 months prior to diagnosis

– Have a definitive diagnosis of the disorder provided by a qualified ear, nose, and throat specialist (ENT) and/or a qualified speech and language pathologist (SLP)

–  Other Individuals excluded in this study include dysphonia with co- existing speech or language disorders, hormonal voice disorders and psychogenic dysphonia

– Speak English fluently and international participants are welcome

Source: Research Participants Needed – Australian Dysphonia Network

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.

It’s Swallowing Awareness Day – Dysphagia: A difficult diagnosis to swallow!

Swallowing Awareness day

Swallowing Awareness Day 2019 is an opportunity to bring attention to swallowing disorders and to connect people with speech pathologists, the professionals who can help. #dysphagia #SwallowAware2019 #Dystonia

Did you know that Dystonia can affect swallowing?

Dystonia is a neurological movement condition that can affect any part of the body and causes muscles to contract or spasm. Depending on the type of Dystonia it can cause swallowing difficulties. Link to types → https://wp.me/P57Axa-1I

What is Neurologic Dysphagia?

Swallowing is complex process involving the coordinated interactions of a network of nerves and muscles, and a number of neurologic conditions can interfere with this process, causing disordered swallowing (dysphagia). Read more here → https://bit.ly/2HgMHcy.

Have you heard of Oromandibular Dystonia (Cranial Dystonia)?

Difficulty in swallowing is a common aspect of oromandibular dystonia if the jaw is affected, and spasms in the tongue can also make it difficult to swallow.
Read more here → 
Oromandibular dystonia (cranial dystonia)

Swallowing Awareness Kit – Speech Pathology Australia

In the Campaign Kit you will find material to help promote the Association’s Swallowing Awareness Day → Swallowing day campaign kit 2019.

Tips! Back to Basics
Care for people who have difficulties with eating and drinking 

Giving Voice

Giving Voice – Royal College of Speech & Language Therapists

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

This webinar covered the following topics:

➡️ Forms of dystonia
➡️ Classifications of dystonia
➡️ How a diagnosis is made
➡️ Possible treatment methods
➡️ Q&A with Dr Meijer

If you did not get the chance to view the webinar please click play to view the YouTube video!

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

View talk by the inspirational Suzanne Bayliss, an ADSG member. She has multi-segmental Dystonia and has had Deep Brain Stimulation (DBS). Thanks for continuing to raise awareness Suzanne! Click YouTube video ‘play’ button to view talk!

Suzanne felt compelled to give this talk despite it being difficult for her to speak.

She is a former social worker and spent much of her career working with refugees. Her passion now is raising awareness of dystonia, a little known and greatly misunderstood neurological disease. Suzanne has five adult children, nine grandchildren and eleven great-grandchildren; some also have dystonia. Source: TEDxJCUCairns.

Related links:
Suzanne’s DBS Story → https://wp.me/P57Axa-dH
Deep Brain Stimulation → https://wp.me/P57Axa-vD
How is Dystonia diagnosed → https://wp.me/P57Axa-hy
Segmental and Multifocal Dystonia → https://bit.ly/2Sd5CtK

Physical activity in people with Dystonia Survey

Physical activity in people with Dystonia Survey

The purpose of this online survey is to understand how physically active or inactive people living with Dystonia are and what barriers to physical activity do people with dystonia experience.

It is a global survey and open to an adult > 18 years of age and have been diagnosed by a doctor/neurologist with any form of dystonia (also termed torticollis). This may include a focal dystonia (e.g., hand, neck), blepharospasm, spasmodic dysphonia, or segmental/generalised dystonia. It should take approximately 30 mins to complete and you can exit the survey and complete it later.

The research study is conducted by Dr Alana McCambridge (University of Technology Sydney (UTS) in Australia with the following co-investigators; Ms Muneeba Chaudhry (UTS), Associate Professor Lynley Bradnam (University of Auckland, New Zealand), and Dr Rebecca Meiring (University of Auckland).

Contact person: Dr McCambridge on alana.mccambridge@uts.edu.au or +61 4 9514 7222.

Link to further details and to complete survey → Physical activity in people with Dystonia Survey 

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!