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.

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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

ADSG Quarterly Review August!

It’s ADSG’S 7th Birthday!

Celebrating 7 years of supporting Australians living with Dystonia. Read more here  The Australian Dystonia Support Group has come a long way!

National Pain Week – 24-30 July 2018

Each year Chronic Pain Australia, the national voice of people living with chronic pain, organises National Pain Week to champion the needs of the many Australians living with some form of chronic pain. This includes pain caused by Dystonia.  This is an opportunity to discuss pain management with your doctor. Read more here → National Pain Week 2018! Do you live with chronic pain?

Premiere of ‘Dystonia’ the short film

The Premiere of the short film ‘Dystonia’ screened in June 2018. Insight into the world of ‘Dystonia’, and the life of a musician who must turn her situation around in the face of a devastating fate.  DVD coming soon! View tailer here → ‘Dystonia’ short film

International Clinical Trials Day – Research is the Key! For finding treatments and cures

We acknowledge the contributions from the patients and the medical profession who work together to help find treatments, and possibly a cure for Dystonia and other conditions. Visit our website to participate in a Dystonia Clinical trial here → Dystonia Research or clinical trials

Link to post here International Clinical Trials Day

The Dystonia Society UK – Dystonia Awareness Week!

It was the UK Dystonia Awareness Week in May and it was a great opportunity to share information relating to Dystonia. Even though the awareness week is over you can still get involved to help raise awareness of dystonia! You can also visit our website to share links to information, a flyer or poster here → ADSG information

Upcoming events!

Speech Pathology Week 19- 25 August 2018

Speech Pathology Week seeks to promote 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. This would include people with Dystonia.  Link for updates or more upcoming events here → Events

Dystonia Awareness Month/Week

In September it will be a great opportunity to create further awareness and understanding of Dystonia. Updates coming soon! Visit our awareness website page here → Dystonia Awareness Month

Dave’s Dystonia Walk 14th October 2018

This October, Dave, a member of our group, is going to compete in the Medibank Melbourne Marathon Festival. He will be walking 21.1kms in this event to raise awareness for sufferers of Dystonia. Visit his Facebook page for updates here → Dave’s Dystonia Walk Facebook Page

Funds raised will go to the Brain Foundation towards Dystonia research. To donate to this vital cause please click link here → Everyday hero Dave’s Dystonia Walk

Good luck Dave and thanks for raising awareness!

2018 NSDA Symposium Video → SLP Se-in Kim presents “The Role of Speech Therapy for Spasmodic Dysphonia (along with Muscle Tension Dysphonia and Vocal Tremor)” and more here  2018 NSDA Symposium Summary

Dystonia Europe → Living well with dystonia Video

Dystonia Europe → Professor Brigitte Girard explains why you should use MyDystonia

Botulinum toxin for spasticity and dystonia – Drug Utilisation Sub Committee (DUSC) Outcome Statement

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. Full report will be available by October.  Link to brief statement here → Drug Utilisation Sub-Committee Outcome Statement 31 May 2018

My Health Record – Opting Out

This year, you will automatically get a My Health Record unless you opt out. If you don’t want a My Health Record, complete the online process by 15 October 2018. You will need your Medicare card and driver licence (or other identification) to complete the opt-out process.

Important note: If you prefer not to opt out and a record is created you will need to log in or have access to the system and set your preferred privacy settings.

If you would like to opt out → Opt out of My Health Record

Medical devices Patient information leaflets

The Therapeutic Goods Administration (TGA), representatives from public health groups and other related networks met on 1 March 2018 to discuss the introduction of patient cards and consumer device information (patient information leaflet) for all permanently implantable medical devices. This may include Deep Brain Stimulation devices. This is in response to concerns from consumers about the absence or limited information provided to consumers about the medical device implanted during surgery. The leaflets will be composed in plain English and the initiative will be introduced in Australia in a staged approach, beginning from 1 December 2018. View more information here → TGA Patient Medical Devices Information Leaflets

Is registration of clinical trials mandatory in Australia or New Zealand?

The 2007 revision of the Australian Code for the Responsible Conduct of Research which was jointly issued by the NHMRC, the Australian Research Council and Universities Australia also contains a clause regarding prospective trial registration. Clause 4.10 of this document states that “researchers must register clinical trials with a recognised register to promote access to information about all clinical trials.”

This is the right step for patents having access to clinical trials. A list of trial registries here → Australian Clinical Trials

Need a Doctor?

See your GP, visit the Health Emergency Options website to find a doctor in the QLD area, an after hour service or call a home doctor. More information here → http://www.healthemergencyoptions.com.au/

Genioz Genome Study (National) Update

Genioz investigated the Australian public’s expectations of personal genomics The Genioz study. The study included forums with the public in several Australian capital cities. For an update click link to read the Genioz publication on Stage 1 of data collection here → Australians views on personal genomic testing: focus group findings from the Genioz study.

For further updates → Genioz Research Findings

Botox is easing arm tremors → Study helps sufferers of neurological conditions at Westmead Hospital

The Pulse → Hope for those with disabling tremor

DMRF  Targeted Gene Panel May Provide Cost-Effective Diagnostic Tool for Movement Disorders

Bionics Institute → Parkinson’s disease sufferers able to sleep through brain surgery (DBS) after breakthrough!

Anupam Datta Gupta, David H Wilson, Queen Elizabeth Hospital → Botulinum toxin for spasticity: a case for change to the Pharmaceutical Benefits Scheme

Queensland Brain Institute → What are neurotransmitters?

BMC Biomed Central  Dystonia – a heterogeneous clinical and treatment landscape

Medium Parkinson’s UK → Dystonia and Parkinson’s: ask the expert

National Disability Insurance Scheme → A GP & Allied Health Professional’s guide to the NDIS

 Irish EDS and HMS → Dear Doctor…. Patient’s Perspective Leaflet

Patient Worthy → How You Look is Not a Measure for How You Feel

CNN Health → The radio man without a voice

Society for Neuroscience → The Brain Facts Book

The Dystonia Society → Dystonia Matters 2018

International Parkinson and Movement Disorder Society  Moving Along Newsletter

The Dystonia Society → Paroxysmal Dystonia

International Parkinson and Movement Disorder Society → Pain processing in functional and idiopathic dystonia: An exploratory study

Parkinson’s News Today → Earlier Parkinson’s Onset and Dystonia Symptoms Seen in GCH1 Mutations in Study

Harvard Otolaryngology: New Findings in Dystonia  Researchers investigate the mechanisms of focal laryngeal dystonia, seeking diagnostic and therapeutic opportunities

The Lancet Neurology → The dark history of early deep brain stimulation

More dystonia research or clinical trials hereDystonia Research

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

It’s ADSG’S 7th Birthday!

Australian Dystonia Support Group 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!