WRITTEN & PROVIDED BY DNA Inc.

ADVISORY BOARD APPROVED BROCHURES

Physiotherapy

Physiotherapy in dystonia is complex and its effect depends on the type of dystonia being treated. For instance postural training and head control exercises can be helpful for people with cervical dystonia (neck dystonia). Other treatments such as massage and stretching do not suit everyone and might even worsen symptoms for a short time in some people, while others gain benefit. Physiotherapy cannot cure dystonia but it may work alongside other treatments such as botulinum toxin, provide relief and help you feel more in control of your symptoms. It is important to understand that muscles do not behave normally in dystonia so you should contact a physiotherapist who understands the condition or is willing to discuss your treatment with someone who is experienced to get the best effect.

 

Jean-Pierre Bleton's book. A physiotherapy handbook

Merz Pharmaceuticals has once again donated 100 translated copies of Jean-Pierre Bleton’s book for physiotherapists – Spasmodic Torticollis – A physiotherapy handbook –

If you would like a copy for your physio please contact DNA on info@dystonia.org.au with your request and postal address. There is no cost for the book but there is a P&P fee of $9.00 You can pay this fee into Dystonia Network of Australia Inc’s bank account: BSB 062 601 Account number 1039 3686. Many thanks to Debbie Marques and  Merz Pharmaceuticals for providing the books.


Australian Dystonia Awareness Week  5th – 12th September 2020 Incl.

Dystonia Network of Australia Inc. (DNA)  is pleased to announce that the    Australian Dystonia Awareness Week on the Government Calendar for 2020 is 5th – 12th September inclusive. We are indebted to Grainger films who decided to professionally  produce the dystonia awareness radio ad for us pro-bono.  Stay tuned to our press release  and news stories pages on our web site for updates. For more information you can also email us mailto:info@dystonia.org.au

 

DNA Dystonia 0.30 sec.  Radio Ad

 

9/9/19

ABC Health Report on Dystonia

Dystonia Network of Australia Inc. (DNA) is thrilled to announce as part of the Dystonia Awareness week the segment on the ABC Health Report on Dystonia is now playing. DNA members Robyn and Paul are the patients who are telling their Dystonia stories and our DNA Advisory Board Members Associate Professor Victor Fung MDS Neurologist spoke on Botox and its effective treatment of Dystonia and how it works by altering messages from the brain, Doctor Stephen Tisch MDS Neurologist spoke about Movement Disorders and what they are, he also spoke on new MRI called a DTI which can show Dystonia the gapes in gene research, and how patients with the gene can sometimes have no symptoms and others without the gene can have the symptoms and finally how therapies are sometimes ahead of understanding conditions and Dr Lynley Bradnam Professor of Physiotherapy (NZ) spoke about Dystonia and what it is and different types of the condition also DBS surgery and how in the early days it was thought it was a hysterical condition and advances in imagery Here is the ABC link: https://www.abc.net.au/radionational/programs/healthreport/living-with-the-mental-weight-of-dystonia/11491220

With Permission of                                                                                                                                                                                                                          James Bullen
Producer, Health Report,                                                                                                                                                                                                                                                                       ABC Radio National  Sydney, Australia

 


 

17/06/20                                        Dystonia Related Pain Survey

Dear All,

We urge you to consider participating in this online Dystonia Survey by Dr Alana McCambridge:
INFORMATION SHEET AND CONSENT FORM FOR ONLINE SURVEYS:
Attached is a small advert that we are using for the study, and the survey link is here: https://protect-au.mimecast.com/s/eVzCCNLJ8nf9k3nlIm_a0w?domain=utsau.au1.qualtrics.com
Participants can also access the link via my twitter profile:
https://twitter.com/AlanaMcC_PhD/status/1272675107438129152?s=20
The final part of the survey is tricky to read as it tries to look into using the ‘new classification system’ for dystonia so if you are aware of people struggling to answer that section at the end they have the option of answering “I don’t know” as well.

Dr Alana McCambridge, PhD
Lecturer, Research RAO Physiotherapy
Graduate School of Health, Physiotherapy
University of Technology Sydney
T. +61 (02) 9514 7222
Building 20, level 6
PO Box 123 Broadway NSW 2007 Australia
uts.edu.au

With permission of Dr Alana McCambridge, PhD Lecturer UTS Sydney

18/04/20

Dear All, one of our members, sent DNA this link for an online cervical dystonia trial for global distribution.

 

18/11/19

Cervical Dystonia Research Survey.

Dear members and sufferers of Cervical Dystonia who continue to exercise  would you please consider completing this survey link below which has been sent to us by Associate Professor Lynley Bradnam  University of Auckland, New Zealand. Follow this link below to the Survey: 

Letter from Dr Lynley Bradnam

https://auckland.au1.qualtrics.com/jfe/form/SV_2aeVmCOIOmfJTMh

With permission of  Professor Lynley Bradnam  University of Auckland, New Zealand.

 

28 /06 /19

Dr Lynley Bradnam
Professor of Physiotherapy  
tandfonline.com
(2019). Visual compensation in cervical dystonia. Journal of Clinical and Experimental Neuropsychology. Ahead of Print.
With permission of  Professor Lynley Bradnam  University of Auckland, New Zealand.

 

18/11/19

Results of the Physical Activity in Dystonia Research Survey.

Dear all,

Thank you for your interest in hearing about the results of our recent online survey regarding physical activity behavior of people with dystonia. Please find attached a brief summary of the main findings.

The study has been published in a freely available online academic journal. You can access the full paper    here.                 Thank you for assistance with this study, we are sincerely grateful and look forward to pursing research into physical activity and exercise for people with dystonia further.

Warm regards,                                                                                                                                                                                                                                 Dr Alana McCambridge, Dr Rebecca Meiring, and A/Prof Lynley Bradnam

 

 


 

Jan. 2019

Physical Activity in Dystonia Research Survey is now live.

Dear members and sufferers of Dystonia would you please consider completing this survey link below which has been sent to us by Dr Alana McCambridge, PhD Lecturer UTS Sydney and Associate Professor Lynley Bradnam  University of Auckland, New Zealand. Follow this link below to the Survey: 

Physical Activity in Dystonia Survey

Or copy and paste the URL below into your internet browser:

https://utshealth.qualtrics.com/jfe/form/SV_1Fi4QoJzAl8KjiJ

With permission of                                                                                                                                                                                                                                                                                                                   Dr Alana McCambridge, PhD Lecturer UTS Sydney and Associate Professor Lynley Bradnam  University of Auckland, New Zealand.

 


 

https://www.dystonia.org.au/living-with-dystonia/allied-health-services/

 

https://www.dystonia.org.au/research/research-news/

 

https://www.dystonia.org.au/media/movementdisorderspecialists-allied-health-australia/physio-melani-boyce/

 

Dr Lynley Bradnam