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. 

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MDS Blog: Rehabilitation as a Therapeutic Approach for Dystonia

MBS post Snippet:
Dystonia is the third most common movement disorder characterized by excessive involuntary muscle contractions leading to abnormal postures and movements. There are various clinical forms of dystonia, and the current available treatments remain mostly symptomatic. While the vast majority of focal dystonias respond well to pharmacological and surgical treatments, many patients with generalized dystonia continue to have mixed responses. The use of rehabilitation-based treatments has emerged as a means to improve outcomes based on the beneficial effect shown in other movement disorders. 
Dr Amit Batla (UCL Queen Square Institute of Neurology), Dr Lynley Bradnam (University of Auckland) and Dr Teresa Kimberley (MGH Institute of Health Professions) who have expertise in this field was invited to discuss the status of employing a rehabilitation approach for the therapy of dystonia. Click link to read further!
Source
MDS Blog: Rehabilitation as a Therapeutic Approach for Dystonia

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 MooreWhat 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

 

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

Save the Date! Exercise for Dystonia Information Session

Guest Speaker: Neurophysiotherapist, Eileen Ting

She has advanced training and experience in neurological and vestibular conditions.
Eileen has has also undertaken a number of research studies

When: Wednesday 24 July 2019 at 10-12pm

Where: Goodwood Park Hotel (new bistro area)
75 Goodwood Rd, Goodwood SA

Time will be made available for coffee/tea and a chat afterwards.
People are welcome to stay for a meal following the information session. 

Contact: sadystonia@gmail.com for more info and to RSVP.

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!

https://sydney.au1.qualtrics.com/jfe/form/SV_3ZNWvk9q19eCVxj

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

Reminder! Parkinson’s & Movement Disorders Information Session – 13 May 2019

A free informative session for patients and carers living with Parkinson’s Disease, Dystonia, Essential Tremor and Tourette’s Syndrome!

The Asia-Pacific Centre for Neuromodulation (APCN) part of the Queensland Brain Institute at the University of Queensland is hosting a Deep Brain Stimulation (DBS) information session and an update on ongoing research in this area. A ‘question and answer’ segment will be available after each presentation. Refer to flyer for further details or event link provided.

Speakers

  • Professor Peter Silburn (Clinical neurologist)  – Overview of DBS
  • Professor Terry Coyne (Neurosurgeon) – Surgery for movement disorders’.
  • Karen O’Maley (DBS nurse at Neurosciences Queensland) – Choosing & Living with DBS for patients / families / support people

A light afternoon tea will be provided, for catering purposes please RSVP by completing the registration form at the following link and clicking on the registration button.

www.qbi.uq.edu.au/movementdisordersevent

Contact person: Sara Gottliebsen at apcn@uq.edu.au or 07 3346 6353 (Monday, Tuesday or Friday)

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