ABC Adelaide Radio | Dystonia talk with Neurophysio Assoc Prof McLoughlin

Associate Professor James McLoughlin, Neurophysiotherapist at Advanced Neuro Rehab  and Flinders University has clinical experience in both neurological & vestibular rehabilitation.  He explains Dystonia with Sonya Feldhoff on ABC Adelaide radio. 

Click link and listen at the 44:30 min mark!

Additional information
Dystonia is a neurological movement or brain disorder which causes muscles to contract or spasm, resulting in pain, tremors, twisting and other uncontrollable movements. Symptoms are thought to be related to the Basal Ganglia that control movement (Neurotransmitters sending signals to muscles causing over activity). There are different types of Dystonia, including Functional Dystonia (Functional Movement Disorder) where symptoms of Dystonia appear and considered involuntary performed without conscious awareness or effort and usually triggered by an event or trauma. Click link for more info ⇒ What is Dystonia?

Take part in this global Survey! Physical Activity Motivators and Benefits in People with Cervical Dystonia (CD)

You will be asked to describe your usual exercise and/or physical activity in a week and demographic information about you and your dystonia, treatments and medications. After this you will complete 7 different surveys. These include; quality of life, dystonia disability, pain and psychological impacts, motivation, life satisfaction, self-determination and self-efficacy and optimism. Most of the surveys are short and can be completed quickly. You cannot be identified from your answers and all participants in the survey will remain anonymous. It will be running until around 20 December 2019.

You can participate if you are over the age of 18 years, have been diagnosed with CD by a neurologist and regularly engage in exercise or physical activity.  

This research study is conducted by Associate Professor Lynley Bradnam (University of Auckland, New Zealand) with the following co-investigators;  Dr Rebecca Meiring and Research Assistant Tia Lindbom.

Functional screening tests in cervical dystonia study – Call out for more participants!

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. 

If you are interested in joining the study please contact Physiotherapist and Associate investigator, Melani Boyce.

Phone: (02) 8890 6500 or mobile: 0407 987 386

Link to further details → Functional screening tests in cervical dystonia

Tremor Review | CONTINUUM: Lifelong Learning in Neurology

Humans have been documenting their tremors for thousands of years. Tremor is defined as an involuntary movement that is both rhythmic (ie, regularly recurrent) and oscillatory (ie, rotating around a central plane). Tremor may manifest in a vast array of ways. As such, the clinical phenomenology is very rich, and it should be no surprise that numerous methods for classifying tremors exit. Thus, tremors may be classified based on speed (ie, frequency measured in hertz), regions of the body affected (eg, arm, voice, head), activation state in which tremor manifests (eg, when the body part is at rest), occurrence of associated medical conditions (eg, hyperthyroidism), and the brain region from which the tremor arises (eg, basal ganglia, cerebellum). Because there are many ways to classify and divide tremor, a large nomenclature applies to tremor. The richness of the clinical phenomenology and its associated nomenclature can be daunting to the clinician. The goal of this article is to provide the reader with a basic approach to the diagnosis and management of the patient with tremor. This approach includes a medical history, a focused neurologic examination, diagnosis, and, finally, treatment.

Article includes ‘Dystonic Tremor’ which may occur in people with Dystonia and links to videos!

Click link to read more → Tremor : CONTINUUM: Lifelong Learning in Neurology

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! 

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.