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!
⇒ https://www.abc.net.au/radio/adelaide/programs/afternoons/afternoons/11748432

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.

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!


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

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

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.

Email: melani.boyce@health.nsw.gov.au
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


INTRODUCTION
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

Movement Disorder Research Project – Participants needed!

Queensland Brain Institute (QBI) Longitudinal Study of Movement Disorders

QBI at Queensland University are looking for participants with movement disorders (e.g. Parkinson’s disease, essential tremor, dystonia etc.) and healthy controls with age ranging from 35-75 years.

Better understanding is needed into the nature and cause of movement disorders in order to identify the pathway of the disease progression. This in-depth study will ultimately help in better and more timely treatments to improve the quality of life of people with movement disorders.

The session may take around and 1.5 – 2 hours. You will be required to perform some simple movement tasks and voice and handwriting samples will also be taken. An experienced researcher will be present at all times to guide your through these assessments

Click links for further information.

→ Movement disorder research project

→ Participant Information Sheet and Consent Form – Quantitative Analysis of Movement Disorders’ Symptoms: A Longitudinal Study

→ Queensland University Ethics Approval Letter

Contact details: Email apcn@uq.edu.au or phone 0436 428 774

This project has been approved by the University of Queensland Human Research Ethics Committee (EC00456).

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. 

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

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

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