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Parkinson's Canberra ACT

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25.01.2022 Interesting new study on Parkinson's-related apathy and Impulse Control Disorder. Summary of findings below - click on link to read the full study. Full article also has links to a useful article on the difference between apathy and depression. A person with PD can indeed experience both apathy and ICDs suggesting they are not on opposite sides of the spectrum. In fact, a significant majority (62%) of those with PD in this study with ICDs had clinically significant apathy;... while 41% of people with PD experiencing apathy also had ICD symptoms. Further, having both apathy and one or more ICDs resulted in having the highest levels of anxiety and depression. The findings from this study challenge the longstanding dogma that apathy cannot co-exist with impulse control behaviors, said Dr. Okun. Although it seems counter intuitive, clinicians should appreciate this possibility. This study suggests that it is imperative that clinicians, researchers, healthcare providers and care partners consider that these two PD symptoms are not mutually exclusive you can experience both at the same time. Knowing that someone with PD could have apathy and ICDs simultaneously, could profoundly impact clinical study designs, how novel medications are designed and tested, the approach (and mindset) of caregivers, and perhaps how those with PD think about themselves.

25.01.2022 Let's get behind Juan Canon - who is part of a team from Crossfit Smash in Canberra raising funds for Shake It Up! Juan is PACT Member - John Kimball's - Personal Trainer! Juan and the rest of the team have embarked on a crazy journey of each completing 100 burpees a day for 100 days, from May 25th until September 1st 2020. That’s 10,000 burpees each and 150,000 burpees as a total team! This is their last week - if you have a few $$$ to spare - add to their effort and cheer ...them on! Juan has already committed to participating in future PACT Fundraisers - appreciating that PACT has made a strategic decision to focus our fundraising and support efforts primarily on education and services to support the quality of life of Canberran's living with Parkinson's and their families and carers.

24.01.2022 Whether you recently learned you have Parkinson’s or have been living with the disease for years, you know how unsettling a diagnosis can be. It is not unusual to feel overwhelmed and uncertain about what to do next. But know that you don’t have to figure out everything at once. Breathe, be kind to yourself and take one step at a time. Your path will fall into place. Tune in as a movement disorder specialist at The Michael J. Fox Foundation answers your questions about Parkinson's research and care. Learn more about living well with Parkinson's disease. Free resources like this podcast are always available at michaeljfox.org.

24.01.2022 Loving this simple guide for helping your body produce the good stuff Which ones will you try today? Found via Jacob Ernst MSW RSW. ... #dopamine #oxytocin #serotonin #endorphins #mindbody See more

22.01.2022 Big Thanks to the Capital Chemist Group for their support of PACT!

22.01.2022 Receiving a Parkinson’s disease (PD) diagnosis can feel overwhelming. This life-changing news can leave you unsure of your next step. As you begin processing your emotions, which can be wide-ranging, it’s important to know you are not alone. Parkinson's ACT (PACT) is here for you at every stage of your journey. We have just updated the resources and links on our website to support you and your family as you begin to build a better life with Parkinson’s disease. Don't hesitate to reach out to members of our community through the PACT Committee or support groups.

20.01.2022 It is one of the things we often have on our ‘To Do List’ but never quite get around to doing. Living Will, Enduring Power of Attorney, Statement of Health Choices, Advance Directive, Advance Health Care Directive. Whatever you call it, it is part of Advance Health Care Planning. And it’s not just for people in later life. None of us know what’s around the corner. ... If you were too unwell to speak for yourself, who would speak for you? An Advance Care Plan helps ensure your values and preferences are respected by doctors and family when you can’t voice your own decisions. This could be due to a stroke, being on a ventilator or other health issue. Health Care Consumers’ Association is running a free seminar via Zoom on Monday 6th July. Learn the steps in making a plan. It is a conversation for everyone. Tips for having the conversation about your wishes. Who can help to get your plan in place. Date: 10:30am midday, Monday 6 July 2020 By Zoom: The link will be sent to you once you register. If you are not confident with online seminars, please let us know. RSVP: By Thursday 2 July. Contact: [email protected] or phone: 6230 7800. Cost: This is a free seminar Organiser: Health Care Consumers’ Association. For more information about Advance Care Planning including free resources check the HCCA website.

20.01.2022 Don't miss out! We are looking forward to catching up with members and other people interested in the well being of people living with Parkinson's at our Annual AGM from 6.00-8.30pm on Friday 30th October - at the Southern Cross Club in Phillip. There will be a chance to catch up in a COVID-safe environment over refreshments and there will also be two interesting presentations by Kate Sterrenberg - Occupational Therapist - talking about how "A Doctor may save your life, but an Occupational Therapist helps you live it!, and PACT Committee Member Jeff Smart and Young at Park Convenor Jen Harkens on "Taking the Bull by the Horns! Empowering people with Young Onset" Click on the link below to register now.

20.01.2022 ANNOUNCING NEW PACT GROUP FOR MEN LIVING WITH PARKINSON'S - 'GUYS & GAMES GATHERING' - starting this Thursday 26th November. * Interested in getting together with other Canberra men living with Parkinson’s? * Enjoy games based activities: cards, scrabble, chess, backgammon, boules/bocce or other ? * Or perhaps, you are also interested in the odd game of tennis or badminton?... Tim Bennetts and I are both Parkies, members of PACT and long term volunteers at local tennis clubs ... and we also both like games! So we thought a games theme would be a good way for men with Parkinson's to meet, spend time together, and get to know each other. The plan is to meet at the Eastlake Tennis club as a venue - we are currently thinking fortnightly - Thursday mornings at 10am-12 noon with our first get-together this coming Thursday, November 26 and again on Thursday, December 10. If there is enough interest we can then lock in the dates for 2021 - there is, of course, no commitment to come regularly but as suits! We already have a couple of others interested for this Thursday, so we will hire a court for a 'bit of a hit' of tennis (please bring your own racquet, if wanting to join in) and we will also bring some other games and test the interest and ideas of those who come along on the day over tea/coffee from one of the Manuka cafes. We expect that as friendships form that conversations will lead naturally to the sharing of information and experiences with Parkinson’s, and the love of games and other common interests. Whilst the venue is a tennis club, and a hit of tennis is one of the options, there is no problem if you prefer other activities or even just want a chat. Eastlake Tennis Club (47 Flinders Way, Griffith, ACT - see https://play.tennis.com.au/eastlaketennisclub) has easy access and parking. Note, though, that there is no disabled/accessible toilet. PACT has public liability insurance and will cover any venue/court costs for this trial usage. Hoping to see a good roll up this coming Thursday 26th November from 10am-12pm! For more info see the attached flyer and https://www.parkinsonsact.org.au/post/guys-games-gathering. Any queries please email me at [email protected] Martin Pikler PACT

20.01.2022 Heros at home! This year, more than ever, the care partners who helped their loved one with Parkinson’s disease (PD) through an unprecedented 2020 deserve recognition during National Family Caregivers Month Whether you care for someone who is recently diagnosed with Parkinson’s disease (PD), are adapting to new challenges as the disease progresses or have been living with PD for a long time, a strong support network is essential for your wellbeing and the wellbeing of the pe...rson with Parkinson’s. Making sure you are taken care of, too, can help create a productive partnership that minimizes stress and conflict. Parkinson’s Foundation has tons of resources to help care partners. In fact, they have an entire section of their webpage dedicated to caregiving. Check them out at the link below.

19.01.2022 Exciting presentation at the Parkinson's Australia Symposium this afternoon on Medicinal Cannabis - perspectives of a researcher and a consumer - A/Prof Nial Wheate and Robert Vicary. While we can't post the presentation from the Symposium here you can learn more about the significant benefits that people with Parkinson's can experience from supervised, medically prescribed cannabis in a number of recent studies... A study published in the National Centre for Biotechnology... (USA), researched Medical Cannabis as a treatment for motor and non-motor symptoms of Parkinson’s disease. In this study, 22 patients with Parkinson’s disease attended a motor disorder clinic and were given Medical Cannabis. The results were measured by using a Unified Parkinson Disease Rating Scale, visual analog scale, present pain intensity scale, Short-Form McGill Pain Questionnaire, as well as Medical Cannabis Survey National Drug and Alcohol Research Centre Questionnaire. The results showed that there was a significant improvement in tremor, sleep, and pain scores. There were also no significant adverse side effects of Medical Cannabis. Ref https://cannabisdoctorsaustralia.com.au/medical-cannabis-a/ See more

19.01.2022 Please take a minute to Vote for Belconnen Arts Centre to keep our community dancing! Voting closes Friday 18 September at 5pm AEST Message below from Philip Piggin, Dance for Wellbeing Programs Officer Dear Dancers and Supporters,... We have a dream to deliver specialised dance programs promoting health and wellbeing, to people living in ACT Aged and Residential Care Facilities and we need your help to make it come true. Please vote for our dream to receive a $10,000 grant from Sunsuper’s Dreams for a Better World program. It’s easy - just visit dreamsforabetterworld.com.au/vote and vote for BELCONNEN ARTS CENTRE. We are near the end of the page on the left and all you need to do is click the "vote" button and enter your email address. Voting closes Friday 18 September at 5pm AEST What is our Dream? Our dream is to connect with the residents of ACT Aged and Residential Care Facilities and provide them with dance programs that result in positive outcomes - physically, cognitively and socially. This will be generously sprinkled with laughter supposedly the best medicine! In this COVID restricted world that is significantly impacting upon our senior communities, we believe such programs are essential for a happy and fulfilling life. How would the Dreams for a Better World grant help our project? This grant will enable us deliver the Dance for Wellbeing program to the growing populations living in ACT Aged and Residential Care Facilities. With a strong record of leading integrated arts and health programs, Belco Arts is well positioned to again pioneer exemplary projects promoting health and wellbeing through quality arts experiences for all. Sunsuper’s Dreams for a Better World initiative is a community grants program with a $150,000 annual grant pool. Since 2011, more than 120 not-for-profit organisations have received a grant to help their dream come true and make the world a better place.

19.01.2022 Another fantastic Symposium presentation - conversation between Olivia Nassais of Parkinson's SA and Dr Fiona Kerr - Founder and Director of the NeurTech Institute talking about neurogenesis and the role of technology in health care. What's neurogenesis? Neurogenesis is the process by which new neurons are formed in the brain. Neurogenesis is crucial when an embryo is developing, but also continues in certain brain regions after birth and throughout our lifespan. Highly re...commend checking out Dr Kerr's fantastic free publication - Look Up - an invitation to live life with a deeper connection to our surroundings, and each other. It is a gentle nudge and reminder for us all to engage more fully with the world around us, and the people we share it with. Click on the link below to download your copy. Gone are the days when we thought our brain was set after a few years, and we couldn’t change it. We now know that the brain moves, grows, prunes and changes continually in response to external and internal stimuli. In short we sculpt our brain depending on what we reinforce and pay attention to. There are peak times in life such as early childhood and adolescence during which the brain grows in size and complexity, but under the right conditions we can grow new brain at any stage of our lives. The ways to do this include adequate exercise and sleep, learning new things, eating the right foods to keep our microbiome healthy, and last but not least, direct human interaction.

18.01.2022 No one diet can treat Parkinson's disease, but medication might require mealtime considerations and dietary changes may help ease certain symptoms. Your physician or a dietitian can design a healthy, balanced diet to fit your needs and improve well-being. Healthy Eating...Continue reading

18.01.2022 Welcome to Exercise Right Week 2020! This year, the theme is Movement is Medicine. Exercise and Sports Science Australia wants to highlight how powerful exercise, physical activity and movement are for your physical and mental health. Being physically active reduces your risk of chronic conditions, like heart disease and diabetes, reduces your risk of mental illness and helps you to live a happier and healthier life. Your body NEEDS regular movement to stay healthy, both ph...ysically and mentally. Keeping active with Parkinson's can be a challenge - but the benefits are incredible. Thirteen people with Parkinson's (many early onset) from all around the world have joined forces to create a video about the benefits of exercise. Each experiences Parkinson’s differently but one thing is quite common - People with Parkinson’s are often apathetic or struggling with motivation because of the shortage of dopamine. Muscle stiffness can make movement difficult, but fighting this movement disorder requires movement Video 1: https://www.youtube.com/watch?v=rRlq45oDsro&t=189s Video 2: https://www.youtube.com/watch?v=9pY8byWpR-k&feature=youtu.be

17.01.2022 Parkinson's Australia have refreshed and updated their website with the goal of making information easy to locate and accessible.

16.01.2022 Today is World Brain Day! This year, the World Federation of Neurology (WFN) have teamed up with the International Parkinson and Movement Disorder Society to raise awareness of Parkinson's Disease and the more than 7 million people it affects globally. The goal? "To move together to end Parkinson's Disease" The WFN will be "sharing vital information about the onset, treatment and prevalence of Parkinson's Disease, and stand beside both those living with the disease and their ...caregivers." You can find more information on what's planned for World Brain Day 2020 by clicking the image below.

16.01.2022 Great interview in the Guardian with Michael J Fox on the release of his new book. In his fourth memoir, No Time Like the Future, the actor and activist poignantly reflects on mortality and his famous optimism. After living with Parkinson’s for 30 years, the actor still counts himself a lucky man. Fox reflects on what his diagnosis has taught him about hope, acting, family and medical breakthroughs. The Queen had her annus horribilis in 1992, Michael J Fox reminds us in this bracingly honest book about the worst year of his life. His equivalent nadir, and the reason he felt inspired to write this third memoir, was 2018. That, you think, must have been a bad year indeed for a man who had been living with Parkinson’s disease since his diagnosis in 1991, when he was 29.

16.01.2022 Whether you are a person touched by Parkinson's disease (PD) or a health care professional, the Parkinson's Foundation's online Expert Briefings offer a course for you. The new season of 12 briefings begins with a focus on Young Onset Parkinson's. The full program is posted as a downloadable in the attached comments. Young Onset PD often emerges unexpectedly, interrupting family life. Taking a proactive approach to care for YOPD can mitigate stress. In this Expert Briefing,... we will discuss strategies for coping with a PD diagnosis and learn practical steps to organizing your care team and PD plan, with the goal of empowering you and your family. Join us to view our free online educational webinar designed for people living with Parkinson’s, care partners and health professionals. All Expert Briefings are recorded for on-demand viewing within a few days of the live recording. A guide for viewing virtual events is included.

15.01.2022 Wondering what to do at 10.30 this evening? Why not register for this free webinar - with an esteemed panel of speakers discussing the global impact of Parkinson's Disease followed by audience questions. World Brain Day 2020 Panel: ... Prof. William M. Carroll President of the World Federation of Neurology Prof. Tissa Wijeratne Chair of World Brain Day, World Federation of Neurology Prof. Claudia Trenkwalder President of the International Parkinson and Movement Disorder Society Prof. Wolfgang Grisold Secretary General of the World Federation of Neurology Associate Prof. Victor Fung Co-Chair of the Taskforce on Pediatric Movement Disorders Prof. Susan H. Fox Chair of the Movement Disorder Society’s Evidence-Based Medicine Committee Click on link below to Register

14.01.2022 What to do if the FOG sets in! An important part of living with Parkinson’s is leading an active lifestyle. In fact, exercise is the only thing proven to slow the progression of Parkinson’s. Exercise is Medicine. Freezing of gait (FOG) is one of the most debilitating symptoms of Parkinson’s because it keeps people from moving around with confidence, decreasing activity levels. So, what can you do to lead an active lifestyle if FOG is an issue for you? Freezing of gait is of...ten described as feeling like your feet are glued to the floor or stuck in cement. Simply, it is the inability to take another step when you want to, and occurs because of a disconnect between the brain and the body. This interruption keeps the neural signal from reaching the motor neurons that should activate muscle movement. Freezing negatively impacts quality of life, daily activities, and is the leading cause of falls for people living with Parkinson’s. Fortunately, visual and auditory cueing has been shown to reduce the duration of freezing episodes by 69%, reduce the frequency of freezing episodes by 43%, and reduce the frequency of falls by 40%.

14.01.2022 Message from PACT VP Marcia Kimball... Freeze, Shuffle, Fall - Didn’t wake up in time for the live session? Watch now for an hour! A wholistic overview of Parkinson’s gait challenges with an update on the latest research and practical strategies and tips from Dr Simon Lewis. Informative and helpful with good humour .....

14.01.2022 Freeze, Shuffle, Fall - Parkinson's and Gait - Register now for a Free Online Seminar with the Professor Simon Lewis. 7.00am Saturday 13th June Canberra time. Let me see you walk down the hallway. Gait disturbances are a hallmark of Parkinson’s and related disorders and involve a variety of concerns such as short, shuffling steps, freezing episodes which feel like your feet are glued to the floor, festination, and other disturbances which can increase risk of falls. Join us for a discussion on the common gait-related problems with Simon Lewis, MD from the University of Sydney. Register here https://events.blackthorn.io//freeze-shuffle-fall-par/cart

14.01.2022 A nice reminder about the importance of support people taking care of themselves - and some great practical tips for doing so.

13.01.2022 PEDAL POWER FITABILITY TANDEM CYCLING PROGRAM NEEDS VOLUNTEER PILOTS AS WELL AS STOKERS! Who do you know who likes cycling and can share an hour or two every so often to help others get out on a bike and feel the wind in their hair? Give them a nudge and encourage them to share their love of cycling and give back! Riding a bike is an inclusive activity however it’s not always an activity everyone can be included in without some extra assistance, particularly if they have... a visual impairment or a health condition with mobility or balance challenges that means they can’t ride safely alone. Come and trial piloting a tandem bike! Instruction on piloting as well as disability specific information will be provided by experience pilots and volunteers. The Fitability Tandem Program, are running a Tandem Come and Try event at Stromlo Forrest Park on Saturday 19th September starting at 9:30am. This is a great opportunity for people to turn up and see if piloting a tandem is something they enjoy and volunteer to share with riders with vision impairment or other disabilities. More information about Fitability Tandem Riding can be found at www.fitability.org.au or you can contact Lindy Hou on 0402 113 836 or email: [email protected]

12.01.2022 6 hours and 50 seconds to go to the Parkinson's Australia virtual national Symposium 2020 - 'Prosper'. The National Symposium provides the Parkinson’s community with the opportunity to come together to discuss and debate healthcare, government programs, and research that directly impacts upon the lives of people with Parkinson’s and their carers. This symposium is about changing the narrative: Developing a positive outlook and engaging with society to improve the independen...ce, wellbeing and options for people with Parkinson’s. See you there!

11.01.2022 Our vocal muscles need exercise, just like any other group of muscles in your body. Being able to communicate with others is essential to a happy and healthy life. However, Parkinson’s makes all avenues of communication tough. Exercising your vocal muscles can ensure you minimize the loss and impact that Parkinson’s will have on your ability to communicate.... There are many techniques and programs that can strengthen and target the voice and have been shown to provide lasting changes in vocal ability and swallowing.

11.01.2022 Dyskinesia (irregular twisting or turning movements caused by side effects of levodopa and happen during ON time, when PD medications are working) can be emotionally and physically draining, can disrupt daily activities, and may be embarrassing at times. The PMD Alliance Neuro-online series will take a look at Dyskinesia, what it is, how it can affect daily activities and options for managing it, with Salima Brillman, MD on September 17nd at 12 pm Pacific on Neuro Life Online... You can register here for this free online event - and if the timing doesn't suit - once you are registered you can always go back and view the presentation at a later time. https://pmdalliance.cmail20.com/t/t-l-puktjld-vddilyhkl-y/

10.01.2022 Save the date! Michael J Fox Thursday webinar. Panelists discuss how and why mood changes, such as depression and anxiety, happen in Parkinson’s; how you and your loved ones can talk about these symptoms with each other and with your providers; and what treatment options are available.

09.01.2022 Given that 1 in 6 Australians have Arthritis and it is the leading cause of chronic pain, PACT members might also be interested in this recently renewed website. It’s packed with valuable quality information and resources to help people with Arthritis take control and become active participants in managing their conditions. And like the management of Parkinson’s, it’s strongly recommended that with Arthritis you’ve got to move it or lose it; rest can make pain and other symptoms much worse.

09.01.2022 "Shining a Light on Parkinson's Disease" - Yet another groundbreaking and exciting Symposium presentation - facilitated by PACT CEO and Treasurer - Jeff Smart - on the promising results of comprehensive studies into light therapy for Parkinson's - John Mitrofanis - Professor of anatomy at Sydney University and a world leader in research into the effects of red and near infrared light in Parkinson's Disease, Luke Gordon and Dr Daniel Johnstone. Changes that have been reported... include recovered sense of smell, writing firm and concise, gait has improved and improvements in climbing stairs, he says. From week to week, it might have only been a subtle change, but the cumulative effect over the months has been quite significant. In addition - and importantly - better sense of wellbeing, better sleep, less anxiety and improved mental clarity. Given that non-motor symptoms like anxiety, depression and confusion are major drivers of reduced quality of life, even minor improvements are likely to be valuable. The pace of studies on photobiomodulation is increasing exponentially. Despite a lot of scepticism, people are being drawn into it by the fact that it works. Encouragingly there have been no known complications from the use of red and infrared light therapy in humans.

08.01.2022 Newly diagnosed? Or keen to learn more about Parkinson's? Register here for the Michael J Fox Third Thursday Webinar Series where expert panelists and people with Parkinson’s will discuss practical tips and personal viewpoints on being diagnosed with PD as well as ways to connect with the community.

07.01.2022 Parkinson's ACT calls on all of our members and community to join us in acknowledging the generous contributions of PACT volunteers during National Volunteer Week. From the PACT Committee members to all of our amazing support group coordinators - PACT would not be here without you!! We invite everyone to put your hand up and thank PACT volunteers and all the volunteers around Australia by waving a special smile of appreciation from your own home. Upload your wave photo and special message to social media here and share using the hashtags #NVW2020 and #waveforvolunteers, and tag Volunteering Australia.

07.01.2022 How can something so simple, sometimes be so hard? Sleep difficulties are common in Parkinson’s. This session will explore the sleep difficulties that can be encountered in Parkinson’s and provide some practical tips to manage and even overcome them. Sleep plays a vital role in good health and well-being throughout your life. Getting enough quality sleep at the right times can help protect your mental health, physical health, quality of life, and safety. The way you feel while you're awake depends in part on what happens while you're sleeping. Throughout October, Parkinson’s Victoria presents its new Living Well online series an informative weekly presentation designed to provide people with advice and tools to continue to optimally manage their Parkinson’s.

07.01.2022 Would you like to try tandem bicycle riding? PACT, in partnership with Pedal Power's Fitability Tandem Cycling program - is looking for people with Parkinson's who would like to try out tandem cycling. The Fitability Tandem Program, part of Pedal Power ACT, will run a Tandem Come and Try event on Saturday 19th September starting at 9:30am. Numbers are limited - Please confirm your attendance with Shireen Sandhu - PACT Volunteer Pedalling Parkies Project at [email protected] Participants will meet at Stromlo Criterium Circuit. Down the ramp from the car park in front of the criterium circuit. At the event there will be a number of trained tandem riders (Pilots!) who will ride with you in a safe, off-road environment, and look after steering, navigation and braking. PACT has developed some tips - a guidance note (attached) for Pilots to help them understand the challenges that riders with Parkinson's might experience and how they can assist. This may open doors for you to get some gentle exercise, meet people and have fun. If you have ridden tandem before this may also be an opportunity to polish your skills. If you enjoy riding at the Come and Try event you may wish to join in regular social rides and other cycling events on tandems. While most Fitability riders are volunteers, you can also speak with us about opportunities to ride tandem through the National Disability Insurance Scheme (NDIS). Under the NDIS you may be able to use some NDIS funds to arrange the regular support of a tandem pilot to reach your cycling goals. Tandem bikes and helmets are provided! If you would like to know more about the event or about tandem riding and the Fitability Program you can also have a look at their website https://www.pedalpower.org.au/fitability/ email: [email protected] Or call Lindy on 0402 113 836

07.01.2022 It goes without saying that you want to do your best to help your loved one with Parkinson’s. But what does that mean in a practical sense?

06.01.2022 BIG CONGRATULATIONS To the program and team that has been honoured with a Community Award in the Mental Health Month Awards 2020. You are all invited to watch the presentation of this award. The award will be presented by the Governor General of Australia David Hurley. The award presentation this Thursday October 29th, from 3:30 to 4:30 pm online with Facebook Live. You can register to join the event on Facebook via the following link in advance ...or just join the link on the day between 3:30 and 4:30pm. The link is:https://www.facebook.com/events/680621192802711?active_tab=about These awards recognise the outstanding achievements of individuals, groups, organisations, businesses, and initiatives in the area of Mental Health in the ACT. has been selected for the category Mentally Healthy Community Award - Community Group. This category seeks to recognise individuals, groups or organisations who have made a significant contribution to improving the mental wellbeing of our community. sees this as recognition of all those who contribute to the success of the group. These include: - all the artists who attend our sessions and all their amazing carers - our facilitators, their helpers, the morning tea cake providers, the card, book mark and film makers, our website designer and maintainer - Parkinson's ACT - Australian National Botanic Gardens, Canberra Symphony Orchestra, Belconnen Arts Centre - music composer for our own suite of music for our group, our people who help write speeches and turn our procedures into books - our members who represent us with Parkinson's ACT and put our paintings on Instagram, see pwp_act - our drivers, support workers and the list goes on and on.

06.01.2022 Join Parkinson's Victoria this October to learn more about navigating legal and insurance matters related to Young Onset Parkinson's. In partnership with Maurice Blackburn Lawyers, Parkinson’s Victoria presents a series of weekly webinars, designed to provide practical advice for people with Young Onset Parkinson's, to protect themselves and family throughout their Parkinson’s journey. Anyone interested can attend all or a selection of these free webinars, which include time for questions during live the Q&A section.

05.01.2022 Very interesting free Webinar 7.00-8.00pm Tuesday 7th July on recent advances in Incision-less Neurosurgery For Parkinson's Disease - click on the link below to register. The treatment of Parkinson's Disease and other types of tremor has been revolutionised by the advent of deep brain stimulation and, more recently, magnetic resonance-guided focused ultrasound or MRgFUS (surgery without a scalpel). Professor Richard Bittar is an experienced neurosurgeon and spinal surgeon who... specialises in the treatment of spinal conditions, movement disorders and other intracranial conditions. He was the first spinal surgeon in Victoria to carry out robotic spinal surgery, and employs a variety of minimally invasive, robotic and navigated surgical techniques to offer spinal surgery as safely as possible. He has published dozens of scientific articles and presented his work at numerous national and international meetings. Most recently, he has partnered with FMIG to bring the first MR guided focused ultrasound (MRgFUS) technology to Victoria (only the second in Australia). MRgFUS is an incisionless way of treating tremor, Parkinson’s disease and chronic pain. Dr Ghaly is an active researcher in the field of Movement Disorders particularly, Parkinson’s disease. He is a highly qualified Australian-trained neurologist, specializing in Movement Disorder Neurology, and also General Neurology. Dr. Ghaly is the lead movement disorder neurologist at Precision Brain Spine and Pain Centre. He also holds a position at the Royal Melbourne Hospital and is a Movement Disorders Neurologist at St Vincent’s Hospital.

04.01.2022 For many, it is embarrassing to bring up taboo topics with your doctor from sexual dysfunction, impulse control, to incontinence. However, when it comes to living with Parkinson’s disease (PD), sometimes these topics can be connected to the disease itself or side effects to PD medications. No topic should be considered off limits to discuss with your healthcare team. The more we normalize and bring awareness to these issues, the less taboo they become. Click into the link b...elow and scroll down to view some of these topics and their connection to Parkinson's, or click to jump straight to a specific topic. Addressing Uncomfortable Topics with Your Doctor Doctors usually wait until the end of an appointment to ask, anything else? How do you transition into your potentially uncomfortable topic? Remember that your doctor has heard it all. She/he wants to help you increase your quality of life. - Give yourself a quick pep talk. Your symptom or issue has been impeding on your quality of life. The conversation will only last a few minutes and may have a simple solution. - Write it down. Give yourself a natural transition in the conversation to bring up your topic. Try something like, I wrote down some symptoms and/or issues I want to discuss, and they are sensitive in nature. - Add details. Try to remember when the issue began, how long it has been a problem, when it occurs and all your symptoms. Your doctor will work with you to address the issue and can often provide guidance or a recommendation.

04.01.2022 Breaking news! Spread the word! New PACT Occupational Therapist - Kate Sterrenberg - wants to hear from you! OT's get stuff sorted! Kate has generously offered her expertise to PACT in a voluntary capacity for a morning each Friday until the end of this year. We would like to extend a big and warm...Continue reading

02.01.2022 Following up on World Brain Day - this is a fabulous free, easy to listen to podcast about the benefits of exercise for brain health, including neuroplasticity - the brains ability to functionally and or structurally change over time. Exercise is a non-negotiable part of good health, but that doesn’t have to mean logging hours at the gym or forcing yourself to go on a run. There are so many benefits of movement that go far beyond the cardiovascular effects and weight manageme...nt that are so often the focus of exercise. It’s actually an essential piece to maintaining prime cognitive function throughout life. In this episode, Dhru and Ryan break down the benefits of exercise for brain health. They discuss why enjoyment is key when it comes to exercise. They also talk about how to create a brain-healthy exercise program. In this episode, you can dive into: Why exercise is so important and how it impacts the brain (7:20) How exercise decreases our chance of cognitive decline (12:30) Why enjoyment matters when it comes to exercise (16:55) How short bouts of exercise increase executive function (20:44) The optimal amount of time and intensity you should exercise every week (24:35) What role exercise can play during a pandemic (35:13) The three macronutrient ingredients in a brain-healthy exercise plan (44:31) The benefits of combining exercise with cognitive challenges (56:05) Three phases of skill learning and why beginners win (1:04:13)

02.01.2022 Talent in our midst!! The PACT Painting with Parkinsons group convenor John Pratt is well known, respected and loved my many for the dedicated support he provides to our members who participate in the PACT painting program. What many might not know is that John is also celebrated as a printmaker and draughtsman of national significance. Before taking on the role of Painting with Parkinsons convener, John was Senior Lecturer in the Printmedia and Drawing Workshop at the ...ANU School of Art. He is highly regarded as both an educator and artist, and has an extensive exhibition record, with his work being held in major public collections including the National Gallery of Australia. PACT members can join the rest of Canberra's art community in enjoying John's latest works at the Beaver Gallery in Deakin - Passage - works on paper - from 24 September 11 October 2020. Painting with Parkinsons is a well-known art therapy program that was established by artist Nancy Tingey. The program developed through international research via a Churchill Fellowship, and through personal knowledge of Parkinson’s, as Nancy’s husband Bob was diagnosed with Parkinson’s at the age of 46. Workshops commenced in the Australian Botanic Gardens in 1994 and continue to this present day, facilitated by John, who is supported by facilitators and volunteers.

02.01.2022 Think of PACT, and encourage your family and friends to think of PACT, if you get a donation dollar and decide to give it to charity as intended. https://www.parkinsonsact.org.au/make-a-donation PACT is a full volunteer run charity that receives no regular Government funding. We are totally dependent on the goodwill of sponsors to provide the funds we need to keep providing services and activities for the 2,000 or so people living with Parkinson’s and their families in the... Canberra region. A single donation, regular giving or a bequest all make a huge difference to what and how much we can do. Challenges like COVID-19 have highlighted the importance of donating, but also how reliant many of our not for profits and charities are on donations of both money and time. The pandemic has seen rates of both plummet. That’s why the Australian Mint’s introduction of the Donation Dollar could not have happened at a better time. The Donation Dollar is $1 legal tender designed to encourage Australians to give, not just in times of crisis, but regularly. One has been minted for every Australian, and Australians are being encouraged to donate the coin if they receive one in their change.

02.01.2022 Speech problems caused by Parkinson's can make it difficult to communicate with family, friends and physicians. And can also interfere with a job (if you often give presentations, for example) and limit social interactions. People with Parkinson's often speak quietly and in one tone, they don't convey much emotion. Sometimes speech sounds breathy or hoarse. They might slur words, mumble or trail off at the end of a sentence. Most people with PD talk slowly, but some speak rap...idly, even stuttering or stammering. Parkinson's motor symptoms, such as decreased facial expression, slowness and stooped posture, may add to speech problems. Samantha Elandary, of the Parkinson's Voice Project has created a terrific and fun home speech exercise program - that also explains why the speech is affected and the importance of being intentional and deliberate with speaking loudly and with maximum effort whenever speaking. The Parkinson's Voice Project is a Not-For-Profit Texas-based organisation that has specialized in restoring the voices of those with Parkinson’s disease. They treat people in their clinic, conduct research, and train speech-language pathologists in our unique therapy programs. You can watch and join along with the Home Exercise program here https://www.facebook.com/ParkinsonVoiceProject/videos/2444352515855707/?vh=e&d=n

01.01.2022 Parkinson's is a complex and misunderstood disease that is often thought to only affect older people when the reality is that 5 Australians under 40 are diagnosed with Parkinson's every day. The No-Escape Room is an interactive promotional campaign designed to allow you to step into the shoes of people living with Parkinson's to experience the challenges faced with everyday tasks such as tying a shoelace, making a cup of tea or using a computer.