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!
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
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
→ 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
→ 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
→ 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
→ 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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