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

Rare Disease Day – Dystonia and Raising Awareness!

Rare Disease Day Dystonia

On 28 February 2018 it is Rare Disease Day to raise awareness for rare diseases and their impact on the lives of patients and families.

It is also an opportunity for participants to be part of a global call on policy makers, researchers, companies and healthcare professionals to increasingly and more effectively involve patients in rare disease research.

Did you know there are some forms of Dystonia that are rare?

Dystonia is a neurological movement condition which affects adults and children and is often not well known. It can affect any part of the body and causes muscles to contract or spasm. Pain, tremors, twisting and other uncontrollable movements can be experienced. Symptoms may be due to the Basal Ganglia or other areas of the brain that control movement. Neurotransmitters may send signals to muscles to cause them to be overactive.

Even though Dystonia can be known as idiopathic or primary Dystonia, it may also be genetic or result from other health conditions such as stroke, other diseases, physical trauma, or as a side effect to certain medications. There are different types of Dystonia and some are rare, such as Dopa-responsive dystonia (DRD), which usually appears in childhood or adolescence with difficulty in walking.

Visit Ophranet to search for more rare forms of Dystonia and other rare conditions. Link: Ophranet Portal

Rare Disease Day 2018 and #CitSciMedBlitz!

Harik, who is part of the ADSG Admin team, volunteers her time despite living with Cervical Dystonia, to support people with all forms of Dystonia, including the genetic and rare forms.

She will be participating in the 24 hour challenge #Mark2Curathon to raise awareness for all rare conditions including NGLY-1 deficiency.

The challenge would be to identify key terms, including genes, diseases, and drugs in all biomedical research which will help the researchers or scientists.

It would be a big achievement in just participating as the condition affects her neck, causes muscle spasms as well other symptoms, and will make it difficult to even attempt the challenge, but she is willing to give it her best to raise awareness for all rare diseases!

You can follow the event and updates on twitter @Mark2Cure or for more info you can visit the Mark2Cure website.

Get on board! Raise awareness and support rare disease research!

#Dystonia #ShowYourRare #MyRare #RareDiseaseDay 

It’s Dystonia Awareness Month – Spread the word!

It’s September and that means it’s #Dystonia Awareness Month! Please help us to create further awareness and understanding of this debilitating Neurological Disorder by sharing this link or post to the slide! #DystoniaAwareness

Visit our ‘Dystonia Awareness Month’ page for more tips to raise awareness! http://wp.me/P57Axa-y9

Dystonia Awareness Month slide – Seek permission to download to share slide, copy or use images.

Dystonia Awareness Month Slide

Dystonia Awareness Month Slide. Seek permission to copy or use images or slide

 

Get Ready For Dystonia Awareness Month In September!

Dystonia Awareness Month 2017

Dystonia Awareness Month – Seek permission to use or copy this image

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 the awareness of #Dystonia during September.

Visit our ‘recent news’ page for updates! If you would like to help spread awareness during the #dystoniaawareness month there are many ways you can achieve this. 

  • Have a Dystonia awareness display at a pharmacy or chemist
  • Leave Dystonia flyers or posters at a clinic or Hospital
  • Add a Dystonia article or story in the newspaper
  • 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 Hosptial or Clinic to add information on the Dystonia awareness month on their medical display screens
  • Share the ADSG Dystonia Awareness Video 
  • Make it the month to donate to Dystonia research or to a cause relating to Dystonia

Visit our Dystonia Awareness Page for more information and publications!

It’s Our Birthday!

NEWS FLASH! IMPORTANT ANNOUNCEMENT!

Today is a very important day for ADSG! It’s the day that Lee Pagan created our very special Australian Dystonia Support Group 6 years ago!

Happy Birthday Australian Dystonia Support Group

We have grown since the 2nd July 2011, we have now over 600 Members (including email Members) and have achieved so much in that time especially with increasing public awareness of Dystonia!

We also have our own Facebook Community Page: 
https://www.facebook.com/AustralianDystoniaSupportGroup

And also our very own Twitter Account: 
https://twitter.com/AusDystoniaSG

Many thanks goes to Lee Pagan, our Admins and also to all our Members for making the Group a safe place to come together to support each other, while sharing the good, the bad and the ugly. 

Battling Dystonia and a mission to raise awareness!

Newsbreak! Have you seen this Dystonia video? 

Lee Pagan, founder of the Australian Dystonia Support Group, was interviewed about her battle with Dystonia, along with young Athlete, Ryan Flinn, who cycled 5,500km from Perth to Sydney in a bid to raise awareness and funds to find a cure for Dystonia.

Dystonia is a neurological movement disorder which affects adults and children. It can affect any part of the body and causes muscles to contract or spasm. This may cause pain, tremors, twisting and other uncontrollable movements. Some forms of dystonia are genetic but the cause for the majority of cases is not known. Link – What is Dystonia?

Watch the Interview! Source: Fighting Flinn – Being Human by Lily Cardis. We would like to give a special thanks to Lily Cardis for helping us raise much needed awareness for Dystonia.

 

Lee Pagan

 

Read further for more about Lee’s Story – Battling with Dystonia!

 

Lee Pagan was initially diagnosed in 2009 with Blepharospasm, which is a Focal Dystonia involving the muscles around the eyes.

Dystonia

She has now been diagnosed with Multi-Segmental Dystonia, which means that she has 2 or more body areas affected by uncontrollable and painful muscle spasms and movements.

Lee had to give up her career as a teacher, and many aspects of the life she once knew – particularly her independence. Her husband even had to retire to support her at home and to drive her to the various therapy sessions and appointments.  

When Lee was first diagnosed she went searching for Dystonia information and support and discovered overseas Dystonia websites and support groups.

That is how the Australian Dystonia Support Group came into being.

The Australian Dystonia Support Group continues to grow and are able to connect with more people with Dystonia. They now have lunches, gatherings and meetings in most of the capital cities, and are finally able to meet other Dystonia sufferers, in person.

ADSG has a fabulous Admin team and now also have an Australian Dystonia Support Group Website, a Facebook Community Page, a Twitter Page and an Email Distribution list. These additions enable friends and family members to read and understand more about this condition. The members are also able to access more information and medical updates relating to this condition as well as connect with other members.

They also have ADSG cards and Awareness Materials that are distributed to Neurologists, Health Practitioners, Pharmacies, etc. These materials have helped people find their group but have also lead to more education and awareness.

Lee Pagan stated that Ryan Flinn, a pro cyclist who rode across Australia in two weeks is amazing and can’t thank him enough for his efforts to raise funds and awareness for Dystonia.

Some of the ADSG members, families and friends have also been involved in awareness and fundraising campaigns.

What the public should know to better understand this condition!

There is so little known about the brain and there is even less known about Dystonia. It is an extremely complex, inconsistent, unpredictable and often debilitating condition. It can be a condition on its own or a symptom of another condition. Each person displays unique symptoms and we all respond differently to treatments. There is no cure.

When you take all of that into consideration I think we mainly want people to understand that:

  • Because it is complex and Neurological (which means that the initial problem is in the brain not the muscle) – we can’t ‘fix’ our muscles and get better – there is no miracle fix, but we all hope to find helpful treatments that will give us some quality of life.
  • Some people with Dystonia may look alright but inside the muscles are misbehaving and they are really suffering. There are some who are unable to walk or talk, and require wheelchairs for mobility and assistive technology for communication.  We are all so very different in how we display which makes finding a successful treatment quite difficult and very individual.
  • Because it is inconsistent and unpredictable – We may be able to do something one day but will struggle to get out of bed or function on another.

“I am one of many Dystonia sufferers. We all hope to spread the word and to gain some recognition and understanding.” Lee Pagan.

Related Links: 

Lee Pagan’s Story – Trapped!

Interview with Dystonia sufferer, Lee Pagan, ADSG Founder!

Deep Brain Stimulation (DBS)

Dystonia Awareness Video

Functional Neurological Disorder Awareness Day UK – Info, videos and more!

 

FND Awareness Day

Functional Neurological Disorder Awareness Day (UK) is a campaign to raise awareness of Functional Neurological Disorders (FND).

What is a Functional Neurological Disorder?

Functional Neurological Disorder (FND) encompasses a diverse range of symptoms including functional limb weakness and movement disorders, functional and dissociative attacks (non epileptic), sensory problems, cognitive problems, visual and speech symptoms. Whilst the symptoms may appear similar to neurological diseases including those of Multiple Sclerosis, Parkinson’s and Epilepsy, and can be just as debilitating, they are not caused by structural disease of the nervous system, but a problem with the “functioning” of the nervous system. Source: FND Action.

Functional Dystonia is known as a Functional Neurological Disorder where some specific symptoms of dystonia appear but tests that normally establish the cause of these symptoms are negative. Source: The Dystonia Society

More info: Functional Dystonia Factsheet PDF

Watch Professor Mark Edwards, Consultant Neurologist at St George’s Hospital, London, Specialist in Functional Neurological Disorder talk about FND!

Snippet of Discussion with Professor Mark Edwards

“It is a problem with the way that you, the conscious person inside your head can get access over auto control your body. The body and the basic mechanics of the brain look like they are all wired up okay. If you have spinal cord damage for example then the basic wiring of the system is just broken, so that’s why it is not working. In a functional disorder all of the wiring is okay and the person wants to move but the two things are not communicating properly. Functional disorder is a problem with accessing or controlling the body.” Source – Professor Mark Edward at FNDaction.

#action4FND #Functionaldystonia #FND

Brain Awareness Week – Be Involved! Spread Awareness and Donate to Research

Dystonia why research important 2017

Dystonia: Why is research important? Please do not copy, alter or upload image without permission. You may share the post or link from this page

It is Brain Awareness Week! Get involved, Spread awareness, Donate to research

Dystonia is a neurological movement disorder which can appear in adults and children. It can affect any part of the body and causes muscles to contract or spasm, resulting in tremors, twisting and other uncontrollable movements as well as pain. Symptoms may be due to the Basal Ganglia or other areas of the brain that control movement.

We need to know more about Dystonia. Research is vital for treatment and hopefully a cure! To donate to research, a cause or to a project relating to Dystonia click on link provided!
 Donate to Dystonia reasearch or projects

Brain Awareness Week (BAW) is a global campaign to increase public awareness of the progress and benefits of brain research. Link: http://www.dana.org/BAW/  #brainweek

What is Dystonia? → Dystonia

Dystonia Research → Research

Hastags: #Dystonia #Dystoniaawareness 

Dystonia Awareness Month – Muscle cramps and dystonia

Dystonia cramps my style

Do not copy or use image without permission. Share page link

Dystonia Awareness Month – Dystonia cramps my style!

“Muscle cramps and dystonia can be confusing as they can feel very similar. You may not always be able to tell the difference between them, but they are caused by separate problems and are also treated differently. Dystonia can be a condition on its own (called ‘primary’ dystonia) or it can be connected to other conditions, including Parkinson’s (‘secondary’ or ‘symptomatic’ dystonia).” Source: Parkinson‘s UK

Link to Factsheet:  Muscle cramps and dystonia

#DystoniaAwareness