ADSG Quarterly Review July 2020

Dystonia Global Updates and Information

Due to the COVID19 Restrictions there have been numerous online webinars and information from around the world! A thanks to all the networks for sharing such valuable webinars for the Dystonia community.

Awareness Events

International Clinical Trials Day – Raising awareness of the importance of clinical trials and research
Acknowledging the contributions from patients and the medical profession who work together to help find treatments, and possibly a cure for Dystonia and other conditions. Click link to read more International Clinical Trials Day

World Voice Day 2020 | Focus On Your Voice – Highlighting the impact of voice changes
Dysphonia can be caused by many medical and neurological conditions such as Laryngeal Dystonia. Raise awareness, support research into the early diagnosis and management of voice disorders. Click link to read more World Voice Day

Upcoming Events
→ National Pain Week | 22-28 July 2020
→ Speech Pathology Week | 25-31 August 2020



Presentations, Videos and Audios

→ DMRF Canada Living Well Webinar Series | Dystonia & Sleep
 Relationship between dystonia and our quality of sleep

→ Dystonia Society Webinar |Taking Control of Your Dystonia – A physiotherapy focus
To help empower Dystonia patients through learning and implementing of new techniques with a physiotherapy focus

→ NSDA Webinars | Voice Techniques to Manage Symptoms of SD & Related Voice Conditions
This two-part webinar, led by a Speech Language Pathologist/Voice Therapist and walks you through specific voice techniques to help cope with & manage spasmodic dysphonia or voice symptoms

→ DMRF Webinar | Dystonia Genetics & Genetic Counseling
Genetic Counselor discusses Dystonia Genetics & Genetic Counseling which includes genetic variations and inheritance risk, types of genetic testing and factors to consider in testing

→ DMRF Webinar | Dystonia & COVID-19
Movement disorder specialists, Prof Mark Hallett and Associate Prof answer questions relating to Dystonia and the Coronavirus

→ Dystonia Europe Webinar| Cervical Dystonia Rehabilitation in Times of Difficulty in Having Access to Usual Therapy
Presentation by Jean-Pierre Bleton, a Physiotherapist/Rehabilitation Specialist. Includes answers to participants’ questions with support of Neurologist Consultant, Dr Marie-Hélène

→ National Spasmodic Dysphonia Association Virtual Symposium Webinars
Combination of live and pre-recorded presentations relating to Dysphonia or voice disorders

→ DMRF | Untangling the Complexity of Dystonia: 40+ Years of Research Achievements
Presentation on Dystonia Research

→ Benign Essential Blepharospasm Research Foundation 2019 Symposium
 Presentations on topics relevant to Blepharospasm patients and Q&A sessions


Information and Articles

DMRF – Mindfulness Meditation Audios
→ Brain & Life Magazine – How Practicing Mindfulness Can Ease Stress
→ Blepharospasm Australia –Beneficial Aids
→ Dystonia Europe Newsletter – Dystonia Latest News and Research
→ Dystonia Europe – Advice during Coronavirus Crisis (Clinical psychologist/neuropsychologist)
→ Dystonia Medical Research Foundation Canada – Dystonia Canada Report Spring 2020
→ Untangling the Complexity of DystoniaDMRF special report
Dystonia Medical Research Foundation Dystonia Dialogue Spring 2020

Visit our social media platforms for more!





Research News

→ MDPI Toxins Review – Treatment of Blepharospasm and Oromandibular Dystonia with Botulinum Toxins
→ ScienceDirect – Treatment of dystonia and tics
Ipsen – Results of a survey relating to spasticity or cervical dystonia & receiving BoNT-A

Participate in these two following research studies:

Dystonia and Pain Research – Complete a Survey!
→ Rutgers University – Participate in a Tele-yoga Study for adults with Cervical Dystonia! (contact to confirm if still recruiting)



Updates for Noting

Medical Costs Finder is an online tool
Use this tool to
see how much people have paid out of pocket for a medical service and compare the costs estimated by your specialists and other health providers for a service with the typical costs for the same service. Link here Medical Costs Finder

Opioids: New and amended PBS listings
As at June 2020, opioid medications are available in smaller quantities with no repeats for the treatment of non-chronic pain. To be eligible for treatment with opioids, patients will need to be unresponsive or intolerant, or have achieved inadequate relief of their acute pain, to
maximum tolerated doses of non-opioid treatments. Further details here → Changes to availability of pain medication on June 1: How will you be affected?

It’s ADSG’S 9th Birthday (2 July)!


The group has grown to approximately 950 members

DMRF Canada Living Well Webinar Series | Dystonia & Sleep

Dystonia and Sleep: Is there a connection, and how well do we understand it?

Movement Disorder Specialist, Dr. Martino (University of Calgary’s Cumming School of Medicine) explains the relationship between Dystonia and our quality of sleep. This is the first webinar in the Living Well Webinar Series. Click link or play to view the video!

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

Webinar | Untangling the Complexity of Dystonia: 40+ Years of Research Achievements

Have you missed the DMRF webinar in regards to 40+ Years of Research Achievements? 

Watch a presentation on dystonia research with Joel S. Perlmutter, MD, Professor of Neurology and Head of the Movement Disorders Program at Washington University in St. Louis, and DMRF Scientific Director.

You can now view the webinar by clicking link or play!

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!

The Dystonia Society Webinar | Taking Control of Your Dystonia – A physiotherapy focus

This webinar is to help empower Dystonia patients through learning and implementing of new techniques with a physiotherapy focus. Presentations by:

Richmond Stace, a Chartered Physiotherapist, Specialist in Pain Physio & Pain Coach
The coaching he delivers focuses on the person, their strengths and the potential to improve their life in specific ways using practical tools, including sensory motor training techniques with a range of exercises and strategies.

Sally Glover, a Clinical Specialist Physiotherapist
She has a particular interest in the multidisciplinary rehabilitation in Neurological conditions, including Dystonia. She talks about individually tailored exercises or physical activity, the combination of Botulinum toxin treatment and physiotherapy, practical tips at home and more!

Related information that may be useful → Facial Massage Worksheet

Click play or link 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