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Deep Brain Stimulation Support Group Online Webinar

The North Shore Private Hospital Deep Brain Stimulation (DBS) support group is moving online and will be holding its first meeting on Tuesday 30 March at 7pm as a zoom webinar. Movement Disorder Neurologist, Dr Paul Silberstein will be the keynote speaker and will be talking about new innovations in Deep Brain Stimulation. This will be followed by a panel discussion with Dr Raymond Cook, DBS Neurosurgeon.

Both doctors will be available to answer questions submitted on the webinar chat or previously by email. This is a great forum to communicate directly with experts in the field. The support group is open to patients already treated with DBS, their relatives and carers and anyone interested in learning more about DBS.  

To register for the webinar, go to
https://www.northshoreprivate.com.au/Our-Services/Community-Information-Sessions or email Carmen at mollerc@ramsayhealth.com.au

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Sydney DBS Team Performs 1000th STN DBS Case

The Sydney DBS team has now performed Deep Brain Stimulation (DBS) procedures on over 500 people living with Parkinson’s disease (PD).

DBS involves the surgical implantation of stimulating wires in a specific deep brain structure, most commonly the Subthalamic Nucleus (STN). Typically, both sides of the brain are implanted in a single operation.

This week the team completed its 1000th STN DBS implantation.

DBS has been used in the management of Parkinson’s disease since 1994. It is estimated that more than 150,000 DBS procedures have now been performed worldwide.

Occasionally, DBS is used in the early years after diagnosis of Parkinson’s disease in the context of medication refractory tremor or severe medication intolerance. More commonly however, DBS is considered in patients 5-15 years after the diagnosis of PD, when the excellent early response to tablet therapy may have become less consistent, despite adjustments in medications. Here, DBS can be very effective in re-establishing consistent control of physical symptoms, with long lasting benefits.

There are four brain areas that can be targeted for stimulation implantation in Parkinson’s disease. Stimulation of each of these targets offers a varying profile of improvements in Parkinson’s symptoms. This allows the possibility to tailor DBS procedures to target an individual’s specific symptoms.

The most frequently targeted brain area in DBS operations is the STN. STN DBS has been shown to reduce off-severity, improve on-time, reduce dyskinesias, facilitate medication reduction and most importantly, improve quality of life. The STN is the most popular target for the treatment of Parkinson’s Disease throughout the world, including Australia, with the 1000 implants taking the team at Sydney DBS 20 years to complete!

DBS is of course not an appropriate treatment for everyone living with PD and the risks and benefits of the therapy need to be carefully considered on a case by case basis. More information can be found at www.sydneydbs.com or https://www.northshoreprivate.com.au/Our-Services/Deep-Brain-Stimulation

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The Young Onset Parkinson’s Exchange (YOP-X) Project

The Young Onset Parkinson’s Exchange (YOP-X) Project is in the development stages of creating an innovative app and other online resources to act as an information portal for those living with young onset Parkinson’s. Additionally, educational tools are being developed for NDIS contracted providers and other health professionals, to assist them to meet the needs of people living with young onset Parkinson’s, by raising awareness of the symptoms, issues and the treatments available that can enhance participation in family, work, social and recreational life. 

Consultations are continuing with people living with young onset Parkinson’s across Australia, and have highlighted key areas of focus including:

  • Employment and Legal Issues
  • Exercise and Wellbeing
  • Mental Health
  • Referral Pathways
  • Relationships
  • Planning
  • Step-By-Step to Applying for the NDIS
  • Supporting the Support People

An online platform has been launched for people with young onset Parkinson’s to upload video selfies for use in the development of the educational tools, and contributions are welcome at www.youngonsetparkinsons.org.au

Additionally, a range of national surveys specifically  for people with young onset Parkinson’s have been developed.

The first survey is to capture the workforce experiences of people with young onset Parkinson’s, who often face a reduced capacity to work, or in some cases leave the workforce altogether. During initial consultations, employment was highlighted as a key area to consider for the App development, specifically how it could assist people with young onset Parkinson’s to stay in the workforce for longer. Research indicates that factors other than onset age and the duration of having young onset Parkinson’s influence loss of employment, and therefore developing targeted strategies could support people with young onset Parkinson’s to remain in employment for longer. 

Workforce Survey for People With Young Onset Parkinson’s – http://ems.gs/3uUe0idcPsS

Following this, a relationship survey and partner survey has been released. During initial consultations for the Young Onset Parkinson’s Exchange (YOP-X) Project, relationship issues were highlighted as a key area to consider for the App development. Some people are doing Parkinson’s solo, some are in long-term relationships, and some met their partner following diagnosis. Changes in relationship responses and functioning that come with young onset Parkinson’s can be as a result of the condition itself, as well as the affects of medication or the impact of other factors such as fatigue or changes in partner roles. 

Relationship Survey for People With Young Onset Parkinson’s – http://ems.gs/3uUe0bAcVJC

Partner Survey – http://ems.gs/3uUe0hhcVJO

For more information on the Young Onset Parkinson’s Exchange Project, or to find out how you can be involved, please contact Katie at Katie@parkinsonssa.org.au

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‘What’s new in DBS for Parkinson’s Disease’ by Neurologist Dr Paul Silberstein

INSIGHT into PD has become the largest online global conference for people living with Parkinson’s disease. Movement Disorder Neurologist, Dr Paul Silberstein was one of the 60 expert speakers from around the globe and his talk is now available for viewing, see below.

The video is 30 minutes in length and Dr Silberstein talks about ‘What’s new in Deep Brain Stimulation for Parkinson’s disease’.

The aim of Insight was to offer an opportunity for people living with Parkinson’s, as well as their loved ones and associated health professionals the chance to hear from world leading experts on Parkinson’s disease. In 2020, INSIGHT attracted 9,000 attendees from over 90 countries.

For more information and to register interest for next year’s event, go to www.insightintopd.com

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Insight into Parkinson’s Conference 2020

INSIGHT has become the largest online global conference for people living with Parkinson’s disease. It is delivered entirely online with over 60 speakers presenting on a range of topics and live panels. The event is free for people to attend for the first 3 days of the broadcast (April 1-3, 2020) with a premium upgrade option available for $99 to those who wish to revisit or re-watch some of the content. In 2020, INSIGHT attracted 9,000 delegates from over 90 countries.

INSIGHT 2020, Future Frontiers, offers an opportunity for people living with Parkinson’s, as well as their loved ones and associated health professionals the opportunity to hear from world leading experts, academics, specialists, clinicians and other people living with Parkinson’s in a convenient and accessible online platform unlike anything else. INSIGHT brings the entire conference directly to you in your living room on any internet enabled device 24/7. Watch the presentations, re-visit them in your own time, join the online conversation, and visit the exhibition booths

Here are five reasons to register for INSIGHT 2020!

  1. First three days are free. If you want more, you can upgrade to stream-on-demand for another 30 day access.
  2. You get 60+ World Class speakers direct to your living room
  3. All of the ticket profits go to our registered Charity Partners to support Parkinson’s research and support services globally
  4. INSIGHT is a World First event and the largest online annual event in Parkinson’s
  5. You can connect with over 5,000 researchers, academics, clinicians and other people living with Parkinson’s from all around the world

To register for 30 day Premium access and find out more information about the speakers, go to www.insightintopd.com

More about the Hosts

INSIGHT is organised and hosted by PD Warrior, a team of health professionals and passionate individuals who are dedicated to improving the lives of people living with Parkinson’s all over the world. INSIGHT was started in 2018 and over the first two years the event has hosted over 2000 attendees, nearly 100 speakers and raised just under AUD$50,000 for the Charity Partners! Digital health and communication is growing fast and an online conference, bringing the brightest minds together on a global platform seemed an obvious solution for the PD Warrior team!! Find out more about PD Warrior here

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Australian Parkinson’s Mission (APM) summary

The Australian Parkinson’s Mission (APM) is an Australian-based, international collaboration involving a revolutionary clinical trial design using potential repurposed drugs as well as genomics research.

Update on the APM study by National Trials Lead, Professor Simon Lewis.

Approximately 100,000 people live with Parkinson’s Disease in Australia, with a further 14,000 diagnosed each year.

Current PD treatments target symptoms of the disease, rather than preventing disease progression. APM aims to develop a framework over the next five years to promote effective and individualised treatments to slow the disease progression for Parkinson’s patients.

APM Collaborators

  • Michael J Fox Foundation (USA)
  • The Cure Parkinson’s Trust (UK)
  • Garvan Institute of Medical Research
  • Shake It Up Australia Foundation
  • Parkinson’s Australia
  • The University of Sydney

About the APM study

Recruitment will commence in March 2020. Recruitment is open to people with Parkinson’s disease, including newly diagnosed and those who have been living with the disease for some time.

Recruitment sites will initially commence in the main cities within Victoria, New South Wales and Queensland, with plans to extend recruitment to Australian regional centres.

Participants in the study will undergo genetic and biomarker analysis so that researchers can classify genetic variations specific to their disease. Participants will then be enrolled in trials utilizing repurposed drugs proposed to have a disease modifying effect in Parkinson’s disease.

The benefits of using repurposed drugs is that they have already gone through the expensive and time-consuming clinical trials to get them to market. One of the aims of APM is to offer a faster process from lab to market for people with PD.

Potential benefits of the study include;

  • Measurement of disease progression through biomarker analysis
  • Individualisation of drug treatment for PD patients
  • Protocol development for screening and early intervention of people at high risk of PD
  • Development of a PD sub-classification based on patients’ DNA

For more information, go to www.theapm.org.au, contact the APM via email at info@TheAPM.org.au or phone 1300 770577.

Links to partner websites as follows:

www.shakeitup.org.au

https://www.garvan.org.au/

https://www.michaeljfox.org/

http://www.cureparkinsons.org.uk

https://www.parkinsons.org.au/

https://sydney.edu.au/

http://www.profsimonlewis.com/