Be involved in a Dystonia study! Functional screening tests in Cervical Dystonia

blue line

Do you have cervical dystonia and can walk without assistance?

The Physiotherapists at Westmead Hospital are conducting a study into walking and balance in people with cervical dystonia. They are looking for adults with cervical dystonia who can walk unassisted to attend 1 – 2 sessions with a physiotherapist at Westmead Hospital. During these sessions, participants will be asked to perform a series of walking and balance tests, and fill in some questionnaires. Results from this study will be used to help design new physiotherapy treatments for people with cervical dystonia.

Click on links to Study flyer and information sheet for further details.

Functional screening tests in cervical dystonia Flyer 

Participant Information Sheet Clinical Trial – Functional screening tests in cervical dystonia

Clinical Trial Contact: If you would like more information or are interested in joining the study please contact Physiotherapist and Associate investigator, Melani Boyce, on melani.boyce@health.nsw.gov.au or phone 0407 987 386.

This research project has been approved by the Western Sydney Local Health District Human Research Ethics Committee and permission has been sought by researcher for ADSG to add to website and social media.

blue line

Battling Dystonia and a mission to raise awareness!

Newsbreak! Have you seen this Dystonia video? 

Lee Pagan, founder of the Australian Dystonia Support Group, was interviewed about her battle with Dystonia, along with young Athlete, Ryan Flinn, who cycled 5,500km from Perth to Sydney in a bid to raise awareness and funds to find a cure for Dystonia.

Dystonia is a neurological movement disorder which affects adults and children. It can affect any part of the body and causes muscles to contract or spasm. This may cause pain, tremors, twisting and other uncontrollable movements. Some forms of dystonia are genetic but the cause for the majority of cases is not known. Link – What is Dystonia?

Watch the Interview! Source: Fighting Flinn – Being Human by Lily Cardis. We would like to give a special thanks to Lily Cardis for helping us raise much needed awareness for Dystonia.

 

Lee Pagan

 

Read further for more about Lee’s Story – Battling with Dystonia!

 

Lee Pagan was initially diagnosed in 2009 with Blepharospasm, which is a Focal Dystonia involving the muscles around the eyes.

Dystonia

She has now been diagnosed with Multi-Segmental Dystonia, which means that she has 2 or more body areas affected by uncontrollable and painful muscle spasms and movements.

Lee had to give up her career as a teacher, and many aspects of the life she once knew – particularly her independence. Her husband even had to retire to support her at home and to drive her to the various therapy sessions and appointments.  

When Lee was first diagnosed she went searching for Dystonia information and support and discovered overseas Dystonia websites and support groups.

That is how the Australian Dystonia Support Group came into being.

The Australian Dystonia Support Group continues to grow and are able to connect with more people with Dystonia. They now have lunches, gatherings and meetings in most of the capital cities, and are finally able to meet other Dystonia sufferers, in person.

ADSG has a fabulous Admin team and now also have an Australian Dystonia Support Group Website, a Facebook Community Page, a Twitter Page and an Email Distribution list. These additions enable friends and family members to read and understand more about this condition. The members are also able to access more information and medical updates relating to this condition as well as connect with other members.

They also have ADSG cards and Awareness Materials that are distributed to Neurologists, Health Practitioners, Pharmacies, etc. These materials have helped people find their group but have also lead to more education and awareness.

Lee Pagan stated that Ryan Flinn, a pro cyclist who rode across Australia in two weeks is amazing and can’t thank him enough for his efforts to raise funds and awareness for Dystonia.

Some of the ADSG members, families and friends have also been involved in awareness and fundraising campaigns.

What the public should know to better understand this condition!

There is so little known about the brain and there is even less known about Dystonia. It is an extremely complex, inconsistent, unpredictable and often debilitating condition. It can be a condition on its own or a symptom of another condition. Each person displays unique symptoms and we all respond differently to treatments. There is no cure.

When you take all of that into consideration I think we mainly want people to understand that:

  • Because it is complex and Neurological (which means that the initial problem is in the brain not the muscle) – we can’t ‘fix’ our muscles and get better – there is no miracle fix, but we all hope to find helpful treatments that will give us some quality of life.
  • Some people with Dystonia may look alright but inside the muscles are misbehaving and they are really suffering. There are some who are unable to walk or talk, and require wheelchairs for mobility and assistive technology for communication.  We are all so very different in how we display which makes finding a successful treatment quite difficult and very individual.
  • Because it is inconsistent and unpredictable – We may be able to do something one day but will struggle to get out of bed or function on another.

“I am one of many Dystonia sufferers. We all hope to spread the word and to gain some recognition and understanding.” Lee Pagan.

Related Links: 

Lee Pagan’s Story – Trapped!

Interview with Dystonia sufferer, Lee Pagan, ADSG Founder!

Deep Brain Stimulation (DBS)

Dystonia Awareness Video

Free Parkinson’s & Movement Disorder Patient and Carer Information Session

Update! The Parkinson’s & Movement Disorder Patient and Carer Information Session has been cancelled but may be rescheduled. Will keep you updated!

Parkinson's and Movement Disorder Patient and Carer Information Session

Dystonia Awareness Week! Join in and help raise awareness!

Dystonia Awareness Week 2017Dystonia is a neurological movement disorder which can appear in adults and children. It can affect any part of the body and causes muscles to contract or spasm, resulting in tremors, twisting and other uncontrollable movements as well as pain. Symptoms may be due to the Basal Ganglia or other areas of the brain that control movement. 

What is Dystonia

Be Involved during Dystonia Awareness Week! Join in and share information about Dystonia!

More information!

Dystonia Awareness Video  We need Dystonia Awareness because…………….

Related links → Dystonia Awareness Week 2017

Save the date! Parkinson’s & Movement Disorder Patient & Carer Information Session

Parkinson's and Movement Disorder Info session

Flyer Courtesy of Queensland Brain Institute – The University of Queensland

The Asia-Pacific Centre for Neuromodulation (APCN) part of the Queensland Brain Institute at the University of Queensland is hosting a free Patient/Carer Information session on Saturday 29 April 2017. All patients and carers living with Parkinson’s Disease, Dystonia, Essential Tremor and Tourette’s Syndrome are welcome. 

Date: Saturday 29 April 2017 at 10am – 2pm

Venue: South Tweed Sports Club, 4 Minjungbal Drive, Tweed Heads South, NSW 2486

 

Flyer: Parkinson’s and Movement Disorder Patient and Carer Information Session 

So we have an idea of numbers please RSVP by clicking on the following link and completing the online registration form.

http://bit.ly/APCN_Registration

If you would like to get in touch before the meeting you can contact Sara Gottliebsen at apcn@uq.edu.au or call 07 3346 6353 on Monday, Tuesday or Friday.

Be involved in a Dystonia study! Investigating attention and decision-making in motor disorders

Investigating attention and decision-making in motor disorders

Investigating attention and decision-making in motor disorders study Flyer Cannot alter without permission

You are invited to take part of the a study at Monash Health that has been designed to explore how the brain is processing information in different disorders of movement—tremor, dystonia and Parkinson’s—using a computerised decision-making task.

This is because your neurologist has diagnosed you with a disorder of the motor system (involving symptoms such as tremor, weakness, dystonia or myoclonus). You may have an organic movement disorder—caused by a genetic mutation, abnormality on brain imaging or a specific pattern of disrupted muscle activity. Alternatively, you may have been diagnosed with a functional movement disorder—which can present with similar symptoms, but result from changes in the way the brain is processing signals (a ‘software’ rather than a ‘hardware’ problem). Their aim is to better understand aspects of how key brain functions are interacting in these disorders by analysing reactions during a decision-making task.

They have developed a computerised visual decision-making task in collaboration with their colleagues at Monash University. They aim to assess the responses of 40 people with different movement disorders (“patients”)—half with organic and half with functional disorders of movement—and 20 people without a movement disorder (“controls”) in order to help them further understand how the brain is processing information in these conditions.

They are looking for both people with and without movement/ motor disorders, so if any friends or partners also want to participate that would be more than welcome. They can be flexible with attendance dates and times.

Study Contact Person: Dr Jen Nagao, Neurology Doctor and Study Coordinator by telephone on 0421 698 380 or email at Jennifer.Nagao@monashhealth.org

For further details please refer to the flyer and the Participant Information Sheet. 

Functional Neurological Disorder Awareness Day UK – Info, videos and more!

 

FND Awareness Day

Functional Neurological Disorder Awareness Day (UK) is a campaign to raise awareness of Functional Neurological Disorders (FND).

What is a Functional Neurological Disorder?

Functional Neurological Disorder (FND) encompasses a diverse range of symptoms including functional limb weakness and movement disorders, functional and dissociative attacks (non epileptic), sensory problems, cognitive problems, visual and speech symptoms. Whilst the symptoms may appear similar to neurological diseases including those of Multiple Sclerosis, Parkinson’s and Epilepsy, and can be just as debilitating, they are not caused by structural disease of the nervous system, but a problem with the “functioning” of the nervous system. Source: FND Action.

Functional Dystonia is known as a Functional Neurological Disorder where some specific symptoms of dystonia appear but tests that normally establish the cause of these symptoms are negative. Source: The Dystonia Society

More info: Functional Dystonia Factsheet PDF

Watch Professor Mark Edwards, Consultant Neurologist at St George’s Hospital, London, Specialist in Functional Neurological Disorder talk about FND!

Snippet of Discussion with Professor Mark Edwards

“It is a problem with the way that you, the conscious person inside your head can get access over auto control your body. The body and the basic mechanics of the brain look like they are all wired up okay. If you have spinal cord damage for example then the basic wiring of the system is just broken, so that’s why it is not working. In a functional disorder all of the wiring is okay and the person wants to move but the two things are not communicating properly. Functional disorder is a problem with accessing or controlling the body.” Source – Professor Mark Edward at FNDaction.

#action4FND #Functionaldystonia #FND

Brain Awareness Week – Be Involved! Spread Awareness and Donate to Research

Dystonia why research important 2017

Dystonia: Why is research important? Please do not copy, alter or upload image without permission. You may share the post or link from this page

It is Brain Awareness Week! Get involved, Spread awareness, Donate to research

Dystonia is a neurological movement disorder which can appear in adults and children. It can affect any part of the body and causes muscles to contract or spasm, resulting in tremors, twisting and other uncontrollable movements as well as pain. Symptoms may be due to the Basal Ganglia or other areas of the brain that control movement.

We need to know more about Dystonia. Research is vital for treatment and hopefully a cure! To donate to research, a cause or to a project relating to Dystonia click on link provided!
 Donate to Dystonia reasearch or projects

Brain Awareness Week (BAW) is a global campaign to increase public awareness of the progress and benefits of brain research. Link: http://www.dana.org/BAW/  #brainweek

What is Dystonia? → Dystonia

Dystonia Research → Research

Hastags: #Dystonia #Dystoniaawareness 

Important update! Botulinum Toxin Program and Co-payments

BOTOX allergen Botulinum toxin Toxin, Dystonia

Dystonia and Botox “Photo © Scott Camazine” You will need permission to copy or alter this image.

In 2015 new arrangements were implemented for providing or administering Botulinum Toxin to patients. A factsheet was provided to better understand how it will affect patients or consumers. Recently the PBS Department has made some minor changes for Doctors, as well as providing further information to patients or consumers. Here is a brief summary of the new information included or changes made.

 The prior factsheet informed patients that co-payments will apply for a public or private patient for each prescription of a botulinum toxin. Now a more detailed summary has been added relating to botulinum toxin treatment for each indication or condition. If a patient is prescribed PBS botulinum toxin for treatment of more than one condition (for example dynamic equinus foot deformity and spasticity of the upper limb), more than one co-payment will apply. Consumers will still be eligible for the PBS Safety Net. Further information was included to ensure that there is no confusion in regards to co-payments.

 Effective 1 March 2017, prescribers will be able to write two prescriptions for botulinum toxin for the same patient on the same day, where there is a clinical need to treat two different conditions. 

Refer to factsheet for full details! Pharmaceutical Benefits Scheme (PBS) Botulinum Toxin Program.

If you are experiencing financial hardship and cannot make the co-payments please speak to your doctor, the clinic or the pharmacy that charges the amount.  You can also visit the MoneyHelp website for financial tips and information. 

Movement toward a cure: UNM Health Sciences Center

Sarah Pirio Richardson, MD, is a movement disorders specialist and assistant professor in UNM’s Department of Neurology. She also heads UNM’s Parkinson’s Disease and Movement Disorders Program. Credit: Sara Mota.  Article source: By Michael Haederle. Copyright © The University of New Mexico. All Rights Reserved.

The purpose of the research was to determine the frequency of medication use in patients with dystonia.

Researchers examined participants enrolled at 37 sites in the United States, Canada, Europe, and Australia through Project 1 of the Dystonia Coalition, an international biorepository study.

Most of the patients were using botulinum toxin. Other medications used were muscle relaxants, benzodiazapines, antipsychotics and drugs usually used to treat Parkinson’s.

“Significantly, up to 25 percent were not using medications at all,” Pirio Richardson says. “That’s a huge number.” Source: University of New Mexico Health Sciences Center.

To read article please click link provided: Movement toward a cure: Studying patterns of medication use.

Link to Dystonia treatment: Patterns of medication use in an international cohort Abstract: Neurology Journal

Related clinical trials: The Dystonia Coalition Natural History and Biospecimen Repository for Isolated Dystonias (DCP)

Visit our ‘Dystonia Research’ page for more studies!

#Dystonia #dystoniacoalition #DrPirioRichardson