ADSG Quarterly Review November 2019

Dystonia Global Updates and Information

Awareness Events

It was Dystonia Awareness Month in September!

A BIG thanks to the ADSG community for sharing posts and information. It has made a big difference! Our goal is to continue to raise awareness so feel free to share links from our Facebook awareness posts! 

Seek permission to use this image. You can directly share the post to this image. Link: https://bit.ly/2PBrwoR

Drop the Jargon Day
A day for community or networks to use simple language. Jargon, technical terms or acronyms make it difficult for people to understand and use information. We shared some of the medical terms relating to Dystonia with the definitions to help you! Link to view and share the infographic post here → Drop the Jargon Day Dystonia Infographic

World CP Day
Raise awareness & recognise those with Cerebral Palsy (CP). Click links for information.
→ Dystonia in Cerebral Palsy
→ CP – Dyskinetic subtypes

Speech Pathology Week
Speech pathologists play a key role in helping Australians with communication disability communicate with confidence. This would include those with Dystonia or Dysphonia. More info here Speech Pathology Week – Communicating with confidence

Be Medicinewise Week
Encouraging Australians to get to know the language of medicines. Understanding and communicating about medicines is key to getting the most out of them, safely. A new survey findings indicate that nearly three quarters of Australians taking medicines on a regular basis are not actually keeping a complete record—and this has implications for safe and effective medicines use. Click link to read further → NPS MedicineWise Survey Findings.
Click link for tips for people with Dystonia NPS Medicinewise Week

Upcoming Events or Support Meet Ups – Visit our ‘Support Meetings’ page for details!
SA Dystonia Support Group Social Meet up – 16 November 2019
SE Qld End of Year Lunch Gathering –  17 November 2019

Presentations and Videos

→ Cerebral Palsy Research Network – CP Dystonia Edition: Series of webinars
They cover an overview of the CP and Dystonia, Care Pathways, Current Research and Gaps. Includes Q&A sessions

→ Dystonia Europe | Professor Tom Warner from UCL Institute of Neurology
Talks about Dystonia and research

→ Dystonia Europe | Raising a Child With Dystonia
Sam Chalmers shares her experiences being a mother of a child with Dystonia

→ DMRF Canada Dystonia Awareness Video
Features some dystonia thrivers who have bravely shared their stories

Articles and Information

→ RN Health Report Audio – Debilitating, misunderstood: living with dystonia
→ Brain & Life Magazine – What does a typical neurologic exam look like?
→ Dystonia Medical Research Foundation Dystonia Talking Points Flyer
→ Continuum: Lifelong Learning in Neurology Tremor (review) and includes audio
→ Cerebral Palsy Education Centre (CPEC) – Mollii Suit which is available for those with CP and like disorders
→ DMRF Post – Common Movement Disorder is frequently Misdiagnosed
→ The Mighty – 13 Things ER Staff Should Know About People With Rare Diseases
→ DMRF – Dystonia Dialogue Newsletter Summer 2019
→ MDS Blog – Rehabilitation as a Therapeutic Approach for Dystonia
→ European Neurology – The Legacy of Charles David Marsden: A Role Model in the Field of Movement Disorders

Research News

→ Frontiers in Neurology – Physical Activity, Sedentary Behavior, and Barriers to Exercise in People Living With Dystonia
→ Practical Neurology – Muscle Cramps
→ The Laryngoscope – Impact of an Upper Respiratory Tract Infection on Botulinum Toxin Efficacy in Spasmodic Dysphonia Patients
→ Neurology Minute Podcast – Cervical Dystonia Network Localization
→ Psyarxiv Preprints – Impaired perceptual sensitivity with intact attention and metacognition in functional motor disorder


Updates for Noting

→ Functional screening tests in cervical dystonia study – Call out for more participants!
The Physiotherapists at Westmead Hospital are conducting a study into walking and balance in people with cervical dystonia and looking for adults with cervical dystonia to participate.

→ Queensland Brain Institute Longitudinal Study of Movement Disorders – Looking for participants
This in-depth study will ultimately help in better and more timely treatments to improve the quality of life of people with movement disorders.

→ MRI Cervical Muscles In Chronic Migraine And Cervical Dystonia
We are pleased that Dr Lin Zhang is a recipient of the Brain Foundation research grant for this study. We have communicated with Dr Zhang and will keep you updated!


Follow and like our social media pages!

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

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

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 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.

Good Friday Appeal – Donate to RCH Complex Movement Disorders Program!

Do not copy or use without permission

The Good Friday Appeal is a time to support or donate to care and research at the Royal Children’s Hospital (RCH).

Donate to the RCH Complex Movement Disorders Program!
The (RCH) Complex Movement Disorders Program (CMDP) supports children with a Movement Condition, including Dystonia. It consists a variety of health professionals or a multidisciplinary team to provide care, innovative and intensive therapies, such as Deep Brain Stimulation to improve their quality of life.

Neurologist, Associate Professor Andrew Kornberg fundraised for the program, by flying a plane around Australia over a 27 day period, which included visiting RCH patients. More here: Cutting Edge Care for Complex Movement Disorders.

To donate directly to the RCH Complex Movement Disorders Program (CMDP) follow these instructions: 

1. Visit or click this linkwww.rchfoundation.org.au

2. Click DONATE button – complete your personal details 

3. In the COMMENTS box – add the following reference/text: Donation to Complex Movement Disorders Program @ RCH

If you are a member of ADSG you can add the following if you wish to: Member of Australian Dystonia Support Group – donation to Complex Movement Disorders Program @ RCH

For further info in regards to donating or fundraising for the CMPD program contact Donna Aranyi at donna.aranyi@rch.org.au or by phone 9345 4510.

Related Links:

Brooke’s Story – Has Generalized Primary Torsion Dystonia and underwent Deep Brain Stimulation (DBS) surgery at RCH → Brooke’s Story 

ADSG Donate page → Donate 

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

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

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!

Dystonia InformationJoin our GroupFind us on Facebook Australian Dystonia Support GroupFollow us us on Twitter Australian Dystonia Support Group

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  

Dystonia Awarenes

Seek permission to copy or use this poster