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

‘Voice Disorders – join the conversation’ Forum

‘VOICE DISORDERS – JOIN THE CONVERSATION’

Australian Dysphonia Network Event – Saturday 27th October 2018

» Are you interested in learning more about voice disorders research, treatments and management?

» Would you like to meet others with voice disorders or to have a friendly catch-up?

If so, then this is the forum for you! Click link to buy your tickets. Hurry before tickets run out!

» https://www.eventbrite.com.au/e/voice-disorders-join-the-conversation-tickets-47382650784

Includes morning, afternoon tea and lunch!

This one day event will provide an opportunity to hear from experts and learn what’s happening in the world of voice disorders research, treatments and management. Above all, you will meet other who share your experience and who understand life with a broken voice.

The program is now available and will provide both formal and informal opportunities to learn, catch up with others, to laugh and to exchange tips and strategies.The event is open to people living with any chronic voice disorder. We encourage you to bring your partner or friend because we recognise the impact that dysphonia has on relationships … this event will provide them a chance to meet others, exchange stories and feel supported. 

Source: Forum 2018 – Speakers Announced – Australian Dysphonia Network

Related links: Introducing the fabulous Voice Health Professionals and other Guest Presenters for upcoming forum » https://bit.ly/2QK2iC7

Speech Pathology Week 2018 – Communication access is communication for all!

Join the conversation about communication accessibility and ensure ‘communication access is communication for all’.

Participate on social media by using #SPWeek #Dystonia

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. Communication is a basic human right and Speech Pathology Week seeks to promote this fact. More information here SP Week Flyer Dystonia can affect your voice, speech or swallowing

Depending on the type of Dystonia, it may also affect your throat, voice or vocal cords, impacting the person’s ability to speak and communicate. More information → Types of Dystonia.

Speech and voice therapy or techniques can help manage the symptoms of Dystonia. More details relating to Speech Pathology here → Speech Pathology Australia  – What is a Speech Pathologist?

Need some communication tips? Click link → Tips for successful communication

More Information

 Laryngeal Dystonia or Spasmodic Dysphonia (voice)

→ Augmentative and Alternative Communication (AAC) Factsheet

 ACC Scope Handout and Communication apps 

Event Reminder – ‘Voice Disorders – Join the Conversation’

This forum planned by Australian Dysphonia Network (ADN) for Saturday 27th October 2018, is an opportunity for those living with or affected by a voice disorder, to come together and share ideas, experiences and support, while hearing from specialistists and researchers in the field. It is open to people living with a voice disorder & their companion(s) as well as professionals and students working or interested in the field of voice health. Link to further details, cost and to register for event → Voice Disorders – Join the Conversation Forum.

ADSG Quarterly Review

There was an abundance of information and events that related to Dystonia in the last 3 months. Here is what you may have missed!

February 2018

Rare Disease Day – To raise awareness for rare diseases and their impact on the lives of patients and families

Harik, who is part of the ADSG Admin team participated in the 24 hour global challenge #Mark2Curathon to raise awareness for all rare conditions including NGLY-1 deficiency. The challenge was to identify key terms, including genes, diseases, and drugs in all biomedical research which will help the researchers or scientists. Link: Dystonia and Raising Awareness!

Despite having some limitations due to Dystonia she unbelievably made it to top 5! https://mark2cure.org/blog/citsciblitz-update/

March 2018

Swallowing Awareness Day – Swallowing is Ageless and What’s this thing called Dysphagia?

⇒ Did you know that Dystonia can affect swallowing?

Brain Awareness Week – To increase public awareness of the progress and benefits of brain research

⇒ Dystonia and Brain Research are vital!

The Royal Children’s Hospital, Melbourne – Good Friday Appeal

⇒ Have you heard about their Complex Movement Disorders Program?

April 2018

Voice Awareness Month – A time to recognise and support people with voice disorders!

⇒ Did you know that laryngeal dystonia or spasmodic dysphonia is also known as a Voice Disorder?

World Voice Day – To Cherish your Voice!

Word Voice day link ⇒ NSDA Videos

Dystonia Europe 25th Anniversary Conference

⇒ History of Dystonia, Prof P Santens

⇒ What causes dystonia? Dr B Bergmans

⇒ Recent Developments in Research, R Goodchild

⇒ Blepharospasm Prof B Girard

Other Conference Presentations  Dystonia Europe YouTube Videos  

FND Awareness Day – To raise awareness for Functional Neurological Disorder

⇒ What is (Functional Neurological Disorder) FND and Have you heard of Functional Dystonia?

⇒ Interview and Q&A with Dr Alex Lehn, Neurologist and leader of the multi-disciplinary team from the Mater Hospital, Brisbane, Australia

Other FND Awareness Day Links ⇒ FND Hope YouTube Videos

World Parkinson’s Day – UniteForParkinsons

⇒ Did you know that Dystonia can be present with Parkinson’s disease?

Upcoming 

Australian Dystonia Suppoirt Group Events 

⇒ UK Dystonia Awareness Week: 5 -13 May 2018

⇒ International Clinical Trials Day: 20 May 2018

Visit our Events’ page for more! 

Research Links

International Parkinson and Movement Disorder Society  Systematic Review of Rehabilitation in Focal Dystonias: Classification and Recommendations

Review Article: ⇒ How Many Types of Dystonia? Pathophysiological Considerations

Discovery through DNA  How Many Dystonia Genes?

Dystonia Research

Click for for more!

Other related information

Virtual Medical Centre  Cervical dystonia: Causes, symptoms and treatments: Dr Rodrigues

International Parkinson and Movement Disorder Society (MDS): Recent Advances in Deep Brain Stimulation (DBS) Technology

Dystonia Medical Research Foundation Magazine (Dystonia Dialogue) ⇒ Cervical Dystonia, Burden of Dystonia is More than a Movement Disorder, Research and more!

Botulinum toxin treatment  Dr Marie-Helene Marion’s views on what can be done for people with dystonia when botulinum toxin treatment is not working well

Finding Your Way ⇒ Dystonia Guidebook for Teens

The Medical Journal of Australia (MJA) Podcasts Episode 5  Botulinum toxin for spasticity, with Dr Anupam Datta Gupta

Dystonia cramps my style  Muscle cramps and dystonia

Types of dystonia ⇒ Myoclonus dystonia

How to manage dystonia symptoms ⇒ Living Well with Dystonia

Emotional Wellness Toolkit  6 strategies for improving your emotional health

Codeine medicines are now prescription only  Info & links

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

It’s Voice Awareness Month! A time to recognise and support people with voice disorders

Join in to raise awareness, support research into the early diagnosis and management of voice disorders and to appreciate how important it is for everyone’s voice to be heard!

Voice Awareness Month Australian Dysphonia Network

Voice Awareness Month Australian Dysphonia Network #Dysphonia #Voice #Dystonia

Did you know that laryngeal dystonia or spasmodic dysphonia is also known as a Voice Disorder?

It is a type of Dystonia (Neurological Movement Disorder), where spasms are experienced in the muscles of the larynx (voice box) that cause the voice to sound tight, strained or hoarse. It can affect speech or voice and make it difficult to communicate. Link to more info → Types of Dystonia

You can follow the Australian Dysphonia Network Facebook Page for updates or planned events. Keep an eye out for World Voice Day Aus

It’s that time of year again. The time that we encourage people to pause for a moment and spare a thought for the phenomenon that is voice!  Those tiny little vocal folds work so hard for us from the time we are born until the time we die – without any accolades or thanks…  they really are the ‘unsung hero’, so April is THEIR month.For most people – voice comes naturally. They are able to communicate with little or no effort or thought (perhaps on occasion, a little more thought would be useful ), but for some of us it’s an hour by hour (or sentence by sentence) struggle.The month of April is OUR opportunity to share our stories and to help people understand that voice does not come easily for everyone all the time. Read more here → APRIL 2018 is voice awareness month – Australian Dysphonia Network 

Speech Pathology Week – Communication access: Everyone gets the message!

Speech Pathology Week 2017

During Speech Pathology Week 2017 join the conversation about communication accessibility and help make sure “everyone gets the message”.

Participate on social media by using #SPWeek #Dystonia

Speech Pathology Week promotes 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. Communication is a basic human right and Speech Pathology Week seeks to promote this fact. 

Dystonia can affect your voice and the ability to speak

Dystonia does not only affect the larger body parts like arms and legs, depending on the type of Dystonia, it may also affect your throat, voice or vocal cords, impacting the person’s ability to speak and communicate. More information → Types of Dystonia.  

There are many techniques that could be used to help people with communication difficulties. Augmentative and Alternative Communication (AAC) is a term used to describe a variety of communication methods, which includes communication Apps.

→ Augmentative and Alternative Communication (AAC) Factsheet

 ACC Scope Handout and Communication apps 

More Information 

Tips for successful communication

 What is Communication Access? 

blue lineNext Event Reminder → Dystonia Awareness Month in September!blue line

Have you heard of Dysphonia or Laryngeal Dystonia?

Dysphonia or Laryngeal Dystonia is a voice disorder or a type of Dystonia (Neurological Movement Disorder), where spasms are experienced in the muscles of the larynx (voice box) that cause the voice to sound tight, strained or hoarse. There a number of types of Dystonia which can affect speech or voice and make it difficult to communicate.

World Voice Day What is Dysphonia

 

Please help us spread awareness! 

Australian Dysphonia Network → Living with a voice disorder

Brain Foundation → Spasmodic Dystonia

National Spasmodic Dysphonia Association (NSDA) → Spasmodic Dysphonia

The Dystonia Society (UK) → Laryngeal dystonia

World Voice Day → Voice Caring