Dystonia and Pain Research | Complete a Survey!

What is the research study about?

The purpose of this global online survey is to better understand the pain experienced by people with dystonia.
The questions in the survey should take approximately 15-20 mins to complete and all the information will be treated confidentially. The information about you (e.g., dystonia type, level of pain) is collected anonymously so that it is not identifiable.

Who is conducting this research?

Dr Alana McCambridge, an academic at the University of Technology Sydney (UTS) in Sydney, Australia will be conducting the research. The student researchers on this project are Master of Physiotherapy students Amanda Amberg, Drew Johnstone, Luis Koeppenkastrop, Monique Crispin and Samuel Liney. 

Inclusion/Exclusion Criteria

To participate in the study, you need to:

  • have had a confirmed diagnosis of isolated dystonia by a health professional (e.g., general practitioner, neurologist)
  • have experienced pain as a result of dystonia in the past 7 days
  • able to read/type in English
  • able to give informed consent

Important note! If you have combined or co-occurring dystonia such as Parkinsonism or myoclonus, or if you have dystonia but you only experience pain due to other reasons (e.g., recent muscle injury) not related to your dystonia, you are excluded from this study as it could affect the study results.

Contact person

If you have questions contact Dr Alana McCambridge via email alana.mccambridge@uts.edu.au

The Survey will be running online for 6 weeks but may be extended if numbers are low. For more information and to complete the Survey please click link provided! 

→ Dystonia and Pain Survey

ADN Film | Dysphonia & The Value of Voice

This film stars 4 Sydney based Voice Health Professionals who take you through some of the issues of dysphonia diagnosis and management in easy to digest language. Supported by 5 brave people who know the daily challenges of a voice disorder, this film helps to shed light on some of the trickier aspects of dysphonia but leaves us feeling hopeful.

Look out for the second feature film ‘Breaking the Silence on Chronic Voice Disorders’ coming soon!

Click link or play to view the video!
Film via Australian Dysphonia Network

View the NSDA Virtual Symposium Webinars!

The 2020 National Spasmodic Dysphonia Association Virtual Symposium took place in May, with a combination of live and pre-recorded presentations relating to Dysphonia or voice disorders.

Due to the COVID19 Restrictions there has been many online webinars from around the world! A thanks to all the networks for sharing such great webinars for the Dystonia community!

Click links to view the NSDA Symposium Webinars!

→ Laryngeal Mechanoreceptors and Laryngeal Motor Control

→ Wearable Non-Invasive Neuromodulation Technology for the Symptomatic Treatment of Spasmodic Dysphonia

→ Validation of the Communicative Participation Item Bank as an Outcome Measure for Spasmodic Dysphonia

→ Understanding Spasmodic Dysphonia

→ The Team Approach to the Patient with Vocal Fold Paralysis/Paresis

→ Spasmodic Dysphonia, Vocal Tremor, and Muscle Tension Dysphonia: A Voice Therapy Perspective

→ Botulinum Toxin Injections for Spasmodic Dysphonia

→ Alternative Injection Approaches for SD and Vocal Tremor

→ Surgical Procedures for Abductor and Adductor Spasmodic Dysphonia

→ Voice Techniques to Manage Symptoms of SD and Related Voice Conditions

→ Develop Resilience and Master the Art of Thriving

→ Question and Answer Panel with NSDA Researchers

→ Living with a Voice Disorder Discussion Panel

 

Dystonia Europe Webinar | Cervical Dystonia Rehabilitation in Times of Difficulty in Having Access to Usual Therapy

Jean-Pierre Bleton, a Physiotherapist/Rehabilitation Specialist from the A. De Rothschild in Paris, gives advice on cervical dystonia rehabilitation in times of difficulty in having access to usual therapy. Specialist answers participants’ questions with support of Neurologist Consultant, Dr Marie-Hélène.

Click play to view webinar!

NSDA Webinars | Voice Techniques to Manage Symptoms of SD & Related Voice Conditions

This two-part webinar, led by Speech Language Pathologist/Voice Therapist, Christie DeLuca, walks you through specific voice techniques to help cope with and manage spasmodic dysphonia or voice symptoms. It covers  voice therapy techniques to decrease strain, tension, throat discomfort and severity of breaks when speaking, to increase speech fluency, and to increase ease and clarity of speech. It includes helpful “tricks” and tools for speaking on the phone, speaking in virtual meetings, and projecting your voice without effort. Source: National Spasmodic Dysphonia Association.

Information sheets relating to the two-part webinar
→ Quick Voice Tips for Dealing with Spasmodic Dysphonia or Related Voice Disorders
→ Spasmodic Dysphonia and Related Voice Conditions during COVID-19

Speak to your speech/voice therapy clinic or your doctor if you would like a consultation through telehealth.

Click play to view Part I Webinar!

Click play to view Part II Webinar!

Participate in a Tele-yoga Study for adults with Cervical Dystonia!

The purpose of this study is to investigate the effect of yoga delivered remotely on adults with dystonia. This work will have implications related to physical interventions, symptom management and quality of life as well as implications related to the role of tele-therapy.
For Australian participants, the time difference has been taken into consideration and they will allocate sessions to accommodate the time difference.

Details of Study

→ Open to adults (18-80 years-old) with Cervical Dystonia
→ 30-minute one-on-one yoga sessions
→ Breathing, posture, relaxation and meditation exercises included
→ Delivered remotely through videoconferencing 2 times per week
→ Time commitment is 12 weeks (includes follow-up testing)
→  Able to use teleconferencing 

Eligibility details for Volunteers

Excludes those with the following:
→ A diagnosis of major depressive disorder
→ Injury or condition that could prevent the ability to engage in yoga poses based on self-report
→ Cognitive impairment or condition that would prevent the subject from understanding the tasks or communicating with the research team
→ Has had past yoga experience exceeding 5 or more times within the last 2 months
→ Women who are pregnant
→ No access to a technological device (such as a smartphone, computer, laptop, or tablet) or access to WiFi that can be used to access the teleconferencing medium

→ If the subject does not want to be recorded during the yoga sessions

Contact of this Study

To participate, confirm details or for further information please email Assistant Professor, Jean-François Daneault (Rutgers University) at jf.daneault@rutgers.edu

Link to additional details → Tele-yoga and Dystonia

World Voice Day 2020 | Focus On Your Voice

World Voice Day aims to highlight the impact of voice changes!

Dysphonia can be caused by many medical and neurological conditions such as Laryngeal Dystonia. Join in to raise awareness, support research into the early diagnosis and management of voice disorders!

Dysphonia can be debilitating and isolating. It can impact on individuals, the workforce and the broader community. It can ruin careers, relationships and lead to depression, yet it is often poorly diagnosed and frequently misunderstood. The Australian Dysphonia Network aims to change that by raising awareness through today’s launch of ‘The Value of Voice’ a short (90 sec) promo clip that is being shared in honour of World Voice Day.

 

For more information and to help spread awareness click the global links provided!

Types of Dystonia → Laryngeal Dystonia or Spasmodic Dysphonia
Australian Dysphonia Network (ADN) → Voice Disorders downloadable resources
World Voice Day Australia Voice Awareness Resources
World Voice Day → Voice Caring
ADSG Post → Have you heard of Dysphonia or Laryngeal Dystonia?
Brain Foundation → Spasmodic Dystonia
National Spasmodic Dysphonia Association (NSDA) → Voice Conditions
The Dystonia Society (UK) → Voice and laryngeal
Dystonia Medical Research Foundation → Spasmodic Dysphonia
Speech Pathology Australia Factsheets

#WVD #WVDAus #Dystonia #Dysphonia

Swallowing Awareness Day 2020 | Dysphagia: A difficult diagnosis to swallow!

Swallowing problems can occur at any stage of life, including those who live with a certain type of Dystonia. In this video Dr Julie Cichero explains why Swallowing Awareness Day is so important for raising awareness of swallowing difficulties (dysphagia).

Related links:
→ Types of Dystonia
→ Speech Pathology Australia Swallowing Information 

#SwallowAware2020 #dysphagia 

ABC Adelaide Radio | Dystonia talk with Neurophysio Assoc Prof McLoughlin

Note for this post. This audio has now expired.

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.