InMotion Magazine Nov 2018

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CEO’S MESSAGE TOGETHER WE CAN ACHIEVE In this final edition of InMotion for 2018, we are reminded of the importance of having people to call on for support, both in times of celebration and when we need a helping hand. The strength we get from being around others was evident to the more than 2900 people who took part in the 10th annual A Walk in the Park, raising an outstanding $293,000 to help improve the lives of people with Parkinson’s in Victoria. It was with great pride that so many of us saw Federation Square lit up in green and purple. It means so much to us at Parkinson’s Victoria to join our community in strength and solidarity as we recognise and support the 27,000 Victorians living with Parkinson’s. This year also marked an increase in the number of regional walks from six last year to nine in 2018, including first-time events for Geelong and Frankston. More than 1800 people walked for Parkinson’s in regional Victoria, with many organisers expressing great delight at the turn-out. Hosting a community walk is not an easy task and we appreciate the work of local Peer Support Groups and volunteers who threw their energy into co-ordinating each of the regional walks. We also acknowledge the community organisations and local businesses who donated their time and raffle items to aid fundraising efforts. Every cent donated is appreciated, but there are some people who ‘go beyond’ expectations to raise funds to enable us to continue to provide quality education and information services. To these people we express sincere gratitude. Funding has been a key focus for Parkinson’s Victoria in recent months as we continued to work with the State Government to ensure continuation of Government funding past 1 July 2019. Funding changes linked to the NDIS had put our $270,000 recurrent funding at risk. As part of The Neurological Alliance (Epilepsy, MND and MS) we have been lobbying the State Government to recognise these conditions as health-related and to ensure Victorians do not lose access to conditionspecific, tailored health information, education and peer support programs.


Emma Collin, CEO of Parkinson’s Victoria

In October, Parkinson’s Victoria received a commitment from both the State Government and Opposition to make funds available in 2019-20, while working with us to pave the way to meet future funding requirements.

Peer Support Groups continue to grow and on 16 November 2018, the Wonthaggi Parkinson’s Peer Support Group will hold its inaugural meeting. I encourage people living in the Bass Coast region to come along and be part of this vital local support network.

Awareness-raising is key to improved understanding so we always appreciate those who allow us to tell their stories for the benefit of others – like Andrew, who shares his story of medication-related addiction.

Those interested in broadening their community and meeting others touched by Parkinson’s from around the world should consider attending next year’s World Parkinson Congress (WPC). As the first held in the Asia-Pacific region, in Kyoto, Japan, it provides the best ever opportunity for Australians to attend.

Just in time for Christmas, we speak to the world-renowned Prof. Shen-Yang Lim about the role of the gastrointestinal (GI) tract in Parkinson’s and offer some tips on how to minimize gut health issues over this time of year when it is often easy to over-indulge. For many people, the festive season is much-anticipated and celebrated. For others, it can bring on tension and emotional stress. Parkinson’s counsellor Amanda Spillare offers some tips to help navigate you through. One way many people cope is by sharing with others in a similar situation, such as a Parkinson’s Peer Support Group. By joining a group, you can gain a sense of community, build a local support system and have a place to openly share concerns with others who understand.

Victoria’s Mike Atkinson is one of two WPC Australian Ambassadors. He has already explored Kyoto and offers some handy logistical information and tips for those wishing to attend. A Travel Grants program can help cover some of the costs involved with attending the Congress. Applications close on 7 December 2018.

Finally, Season’s Greetings to all. I wish you and your family a very safe and happy festive season.

Emma Collin CEO Parkinson’s Victoria

NEWS & HIGHLIGHTS MEDICAL DECISION MAKING LAW CHANGES MEDICAL DECISION MAKING LAWS CHANGED IN MARCH 2018 WHEN THE MEDICAL TREATMENT PLANNING AND DECISIONS ACT 2016 CAME INTO EFFECT. A person can now appoint a medical treatment decision maker with authority to make medical treatment decisions, meaning a person no longer needs a medical enduring power of attorney to do this. A medical enduring power of attorney made before the law changed is recognised under the new Act, so there is no need for legal documents made before 12 March 2018 to be redone. There are formal requirements that need to be met when a person appoints their medical treatment decision maker, including witnessing requirements.

The new laws allow for the creation of new legal documents called advance care directives, which may include either or both: • an instructional directive with legally binding instructions about future treatment the person consents to or refuses • a values directive which documents the person’s values and preferences for future medical treatment. A person can still make an enduring power of attorney to appoint someone with authority to make decisions about their financial and personal matters. It is important to note that personal matters no longer includes health care matters. Further information and forms can be found in the Office of the Public Advocate booklet, Take Control, which can be downloaded from publications-forms/take-control-march-2018

FROM THE PHONE LINE Over the past 5 years, phone calls to Parkinson’s Victoria’s Health Information Line have doubled. In this edition, we focus on popular holiday-related questions. I am going on a cruise and am concerned that I might get sea-sick. Is there medication I can take if this occurs? The safest medication you can take is Motilium (domperidone). This will help settle any nausea and will not interfere with your regular medications. This will need to be prescribed by your treating doctor. Other anti-sea sickness medication such as Stemetil and Maxolon can make the symptoms of Parkinson’s worse and should be avoided.

How important is the timing of Parkinson’s medication while I am on holiday? The timing of your Parkinson’s medication is important and becomes even more so as the condition progresses. Extra vigilance is required to maintain your medication regime while on holiday or away from home. As the medication works by replacing the dopamine you are no longer producing, when dopamine levels drop, you can experience discomfort and immobility, mood changes, anxiety and pain.

I am travelling overseas, across different time zones. How do I take my medicine to allow for the same control of my symptoms? As everyone’s medication regime is different, you should speak with your neurologist or one of the nurses at Parkinson’s Victoria to help adjust your medication regime. With some guidance, it’s simple and easy to accommodate travel over multiple time zones and adjusting to a new time zone, so don’t let this stop you travelling!

Getting into good habits with your medication – and maintaining those habits even when out of your normal routine - will help avoid this.



PARKINSON’S PALOOZA In its third year, Kim Goodridge’s fundraiser, Parkinson’s Palooza – held each August before A Walk in the Park – was an unprecedented success. Kim began hosting the event after her Dad, Wayne, was diagnosed with Early-Onset Parkinson’s. Families and friends joined Kim and her family, coming together to raise funds in support of the Parkinson’s community.

The Thornbury Theatre provided a spectacular venue for the Parkinson’s Palooza

Close to 200 people filled the Thornbury Theatre to dance, laugh and play game after game – everything from ‘closest coin to the bottle’ to an 80’s dance-off. Generously donated prizes were everywhere and gold coins were eagerly spent, tossed and donated. When combined with her other fundraising efforts, Kim raised more than $20,000 as part of A Walk in the Park 2018.

MICHELLE’S TRIVIA MICHELLE MENDES IS ONE OF PARKINSON’S VICTORIA’S MOST LOYAL AND COMMITTED FUNDRAISERS. Diagnosed in 2012, she has made it her mission to look for ways to support the Parkinson’s community. Having raised funds for A Walk in the Park for several years, Michelle, took the extra step this year and held a Trivia Night for Parkinson’s at WestWaters Hotel in Caroline Springs. Determined as ever, Michelle had the support of school colleagues, fellow councillors, peers and family. It was a well-attended night, great fun for all, with a delicious meal, challenging trivia and great prizes.

A painting created during the Trivia night was then auctioned off, raising $900.


Whether it’s the first time you’ve hosted a fundraiser or you want to raise the bar, we’re here to help. Call our Fundraising Team on (03) 8809 0400.

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Earlier this year, Mike flew to Japan for some handy reconnaissance for those planning to attend the four-day forum, which will showcase the latest developments in Parkinson’s from around the world. The event will bring together researchers, physicians, rehab therapists, nurses and those living with Parkinson’s, their family and carers. He offered his views on the following: Rail travel to Kyoto: “I collected the Japan Rail pass at Tokyo Station and travelled by bullet train to Kyoto, approximately 3 hours in a very comfortable train. Kyoto Station is a fabulous facility that could be its own city state! It has absolutely everything, from large department stores to hotels and every cuisine you could think of in food halls, restaurants and cafés”. Rail travel in Kyoto: “The train from Kyoto to the Congress is easy to access. It’s about 20 minutes to the Kyoto International Conference Centre, which is the end of the line. For a Parky, it’s mostly OK, but the walk to the Congress from the Station is a reasonable distance, mainly underground. Hopefully there will be some wheelchairs provided”.

Kyoto 2019

1359 Broadway, Suite 1509 New York, NY 10018 USA

Together with Karyn Spilberg, Mike Atkinson is one of two Victorians appointed Ambassadors for the 5th World Parkinson Congress, to be held in Kyoto, Japan in June 2019.





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Kyoto, Japan

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Hotels: “There are plenty of 3 to 3.5 star hotels in central Kyoto, plus a full range of accommodation including homestays in FIRST ANNOUNCEMENT traditional Japanese homes. My personal view is that a room near アジア初開催 ご案内 Kyoto station is better located in many ways than staying in a hotel at the Congress site, particularly for eating and shopping”.


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Mike said from his experience, Kyoto felt safe. He recommended people pack for hot weather (the average June temperature is 27 degrees but it can be humid) and also bring extra cash as “Japan is expensive.” Travel grants: The World Parkinson’s Congress offers a limited number of travel grants to people living with Parkinson’s to help cover costs of attending. Applications close on 7 December 2018. See A full overview, including the program, registration process and planning your trip, can be found at

Are you interested in attending World Parkinson’s Congress 2019? Let us know by calling Parkinson’s Victoria on 8809 0400 or email and we can connect you with others attending from our community.

RIVERINE REFLECTIONS Malvern Artists’ Society hosted an exhibition in September, Riverine Reflections, featuring Albury-based landscape artist Chris Ellis, who was diagnosed with Young Onset Parkinson’s 23 years ago. Chris studied fine art in Melbourne in the early 1980s, before moving to a farm in country NSW. He did not start painting again until 2009. The exhibition featured 20 oil paintings and 20 watercolours paying homage to the Murray River. “When I moved to Albury five years ago, I was naturally drawn to the Murray River and its wetlands. There was actually water to paint, not like my farm where I only got to paint dry water courses and the tracks left by water,” Chris said. “My paintings have gone from being yellow-brown in colour to predominantly blue. It has lifted my spirits and expanded my arts practice. My paintings reflect the beauty of the wetlands, which are teaming with wildlife, and the underlying importance of the Murray to nature and agriculture.”

Albury artist Chris Ellis in his studio.

Interested in painting? We can put you in touch with a Painting for Parkinson’s group – a fun way for people to come together and be creative while supporting each other through the journey. Contact our Health Team on 1800 644 189 for details.


SUN AND SMILES MARK 10 YEARS As dawn broke, the giant screen at Federation Square heralded the day for more than 2900 people to come together and walk tall for Parkinson’s. From the outset, there was a tangible buzz for this special 10th anniversary walk. Anticipation grew as people arrived and the sun shone. The impeccable Simon Mallory once again informed and entertained as MC, while the sensational Annabelle Eve and her band were as impressive as ever. Parkinson’s Victoria’s Chair David Finkelstein welcomed the crowd and acknowledged the sponsors, without whom the event would not be such a success. CEO Emma Collin thanked the top fundraisers and introduced the 10 Walk Ambassadors who so adeptly helped promote the event. Among them was former Olympian and marathon runner Steve Moneghetti, who walked for the first time in a public show of support for his mum. Actor Shane Jacobson also stopped by, on his way to perform in The Rocky Horror Show, to welcome everyone and get the walk on its way. Shane’s mum Jill Goss has been part of A Walk in the Park since its inception and in an engaging burst of energy, she joined her daughter Natalie, grandchildren and friends in an interactive pre-walk warm up.


At 11am, participants set off in waves from the picturesque start line along the Yarra River. This was not a race. People walked, wheeled, strolled, talked and contemplated as they walked through Kings Domain. Many walked alone but as part of a community; others walked with family, friends and colleagues, all united in support of each other under the blue skies of a picture perfect late winter’s Melbourne day. There is no doubt the highlight was the collective 2900 people who enthusiastically embraced it, including 88 who have been part of all 10 walks. Other stand-outs from the day: • Complimentary massages from Melbourne Institute of Massage Therapy & Myotherapy students • Pampered pooches at the Doggy Day Spa • A children’s corner with face painting and colouring in • Rotary Club of Glenferrie’s mouth-watering sausage sizzle • Roving Stormtroopers and fairytale characters • Specialist information from Parkinson’s Victoria and North Eastern Rehabilitation Centre. The tribute wall also reminded us of the personal reasons people take part in the walk. It is a day of mixed emotions, but is a reminder that smiles can be found on a journey that is shared.


FUNDRAISING RECORD We have been overwhelmed by the generosity of those participating in A Walk in the Park – as well as the wonderful family, friends, community organisations and businesses supporting them. Thanks to your efforts, our fundraising target was once again exceeded. In total, more than $293,000 was raised to help improve the lives of Victorians with Parkinson’s.

Are you or a family member living with the challenge of Parkinson’s?

Every dollar counts, but we would like to acknowledge the top five individuals who tirelessly fundraised for A Walk in the Park.

Kim Goodridge $20,042 At Cabrini, our Parkinson’s Program specialises Debbie Sheldon-Collins in working with people$8,221 who have Parkinson’s and similar movement disorders. As a team, we Angela Di Paola $8,110 help people address the unique difficulties and WALK challenges that individuals face. Peter Raymond $7,098


We extend a special thanks to our A Walk in the Park 2018 Ambassadors, who so kindly

Cabrini is a national leader in the treatment of their personal stories and helped spread the word through online and traditional shared $6,624 Maria Ibrido Lucca Parkinson’s. We know that Parkinson’s ismedia different – (from left to right) Prof. Meg Morris, Peter Raymond, Mary Jones, Jill Goss, for everyone, and with you we can find the right Philpott, Kim Goodridge, Geoff Wilkinson, Geoff Constable. Inset: Karyn Spilberg (L), Howard In addition, we had 65 people who raised treatment and support for your situation. Steve Moneghetti (R). more than $1000 to achieve special $1K Club status.

All proceeds from A Walk in the Park will help improve the lives of people with Parkinson’s through Parkinson’s Victoria’s health information service, education and peer support programs.

CORPORATE PARTNERS A Walk in the Park couldn’t happen without the support of our wonderful Event Partners.

Event Partners

Silver Partner

Expo Partner

A truly heartfelt thank-you!

LAST MAN STANDING For most people, A Walk in the Park was over by 1pm. Some had left for lunch with family and friends, some to make the long journey home and others to put their feet up. The stage was being packed down. Not so the giant inflatable finish line. Visitors and tourists walked underneath, children ran through laughing. The finish line would remain until the last person finished. That person was Geoff Trott. His A Walk in the Park story is one of steely determination. They say a picture tells a thousand words. Geoff and his wife Elin were pictured at the start of the walk - she with his folded wheelchair, him wearing knee and elbow pads. What transpired captures the essence of why A Walk in the Park is so important to the Parkinson’s community. It’s about courage, mental fortitude and strength

in adversity. It is also about support. Together with his wife, a fellow walker chose to stay with them to the end. Step by step, Geoff made his way along the 2km course and towards the finish line. Just a metre or so away from reaching his goal, he again fell to his knees. With support and encouragement from his wife and Parkinson’s nurse Victor McConvey, he stood up again. A few breaths, internal dialogue and the urging of a small group gathered at the finish line, he took those last few steps to complete the walk. For Geoff it was a triumph. For those watching, it was a poignant reminder of the power of human spirit and a touching reminder of why this event is so special.

Congratulations to Geoff and all those who walked tall for A Walk in the Park 2018.


WALKING AROUND VICTORIA PARKINSON’S VICTORIA EXTENDS ITS APPRECIATION TO THE MANY PEOPLE WHO WORKED TIRELESSLY TO CELEBRATE 9 WALKS IN REGIONAL VICTORIA FOR A WALK IN THE PARK 2018. In total, around 1800 people walked tall for Parkinson’s across regional Victoria, and raising more than $27,000. Organising an outdoor community event is no easy feat, but the regional organisers and organising committees took it in their stride, hosting successful community events in respect of both awareness and fundraising. Importantly, these events also showed those living with Parkinson’s in regional Victoria that they do not walk alone.

MILDURA SLOW WALK The 9th Slow Walk in Mildura was held on a beautiful, sunny day, attracting about 150 people, many of them wearing red, the colour of the Mildura walk. Organiser Cheryl Barnes was thrilled with the turn-out for the walk, supported by local MP Andrew Broad and Mildura Mayor Mark Eckel. A sausage sizzle cooked by the Mildura Peer Support Group, a coffee van and home-made slices were welcomed by those who completed the 2.5km walk from Henderson Park to Jaycee Park. Cheryl’s daughter Trina White summed up the spirit of the walk – “it’s hard to watch people you love deteriorate into a different body and for everybody it makes it easier if they can see they’re not alone.”

HORSHAM Wimmera Parkinson’s Peer Support Group held its most successful walk to date. Organiser John McRoberts said they were “quite overwhelmed” by the support, with more than 100 people turning up for the picturesque walk through Weir Park, alongside the Horsham River. The walk was officially opened by local MP Emma Kealy, who cut the start ribbon, while participants also enjoyed a post-walk sausage sizzle. Amongst the walkers were 5 generations of one family, the youngest just 11 weeks old. More than $5000 was raised.



A last minute addition to the regional walk program, Karen Beggs from the Frankson Peer Support Group worked closely with St John of God Rehabilitation Hospital to organise a local walk in just 3 weeks!

Geelong threw its support behind the city’s inaugural A Walk in the Park on 9 September, with 545 people and many pets completing the 2km route through Eastern Park, raising more than $17,000 along the way.

About 65 people walked through the beautiful George Pentland Botanic Gardens, raising just under $800 through gold coin donation and the sale of purple ribbons made by hospital staff.

The local community banded together for the successful event, with organiser Kirsten George supported by local Parkinson’s groups, including Young@Park Barwon, Geelong Peer Support Group, Parkinson’s Ocean Grove, Painting with Parkinson’s Torquay and Dance for Parkinson’s.

BENDIGO Bendigo’s A Walk in the Park fundraising effort was boosted by a $5000 donation from the Central Victorian Chrysler Club, an amount Bendigo Peer Support Group secretary Glenis Gordon said was “staggering.” After a year’s break, Bendigo supporters were out in force, with about 250 people taking a walk around Lake Weeroona, led by the Clan McLeod Pipers and Drummers. The Peer Support Group provided a sausage sizzle, while the raffle was boosted by generous local business donations.

WARRNAMBOOL The Warrnambool and District Pipes and Drums band lead around 300 people, who came together for the 1km walk along the Warrnambool foreshore, despite the threat of rain. Among the walkers, many of them carrying purple balloons, were local MP Roma Britnell and Warrnambool Mayor Robert Anderson, his wife Jeanette and four fellow councillors. The Rotary Club of Warrnambool Daybreak provided a free sausage sizzle. Organiser Andrew Suggett said the show of support by the local community had lifted the spirits of those living with Parkinson’s and their carers, and importantly, had brought new people into contact with the local peer support group.

TIMBOON About 130 people attended the second annual Timboon walk on 16 September, supporting locals living with Parkinson’s and helping to raise more than $3600. Organiser Pam Robb said the walk was led by the Warrnambool Pipe Band, with people of all ages taking part. “It’s just incredible, the community rises to the occasion every time,” she said.

YARRAWONGA More than 150 people took part in the Yarrawonga walk around Chinaman’s Island nature reserve on 30 September, which was an increase of more than 60 on the previous year. A number of people spoke at the event, including Parkinson’s Victoria Board member Dylan Hardy, local MP Tim McGurdy and well-known locals Rob Purtle, Peter Chisnell and Lauren Mulquinney. Organiser Judy Ramsdale said it was a fantastic day and great to see so many people supporting the walk. Appreciation was also expressed for the local businesses who supported the event. Approximately $2060 was raised on the day, an increase on the previous year.

WODONGA Sumsion Gardens provided an idyllic location for just over 100 people who took part in the 8th Wodonga walk. The final A Walk in the Park event for 2018, the Wodonga walk was held on 14 October as part of local Seniors Festival celebrations. Participants enjoyed a sausage sizzle put on by the Albury-Wodonga Peer Support Group and $1028 was raised.













As a reward to himself after clearing his debts, Andrew saved for his new pride and joy, an e-bike.

MEDICATION MADE ME GAMBLE ANDREW FOUND HIMSELF IN THE GRIP OF MEDICATION-INDUCED GAMBLING. HE SHARES HIS STORY TO ENCOURAGE OTHERS TO SPEAK UP AND BREAK FREE FROM THEIR ADDICTION. I was diagnosed with Young Onset Parkinson’s 16 years ago at the age of 46, and have been on medication of one sort or another ever since. I’ve always had a certain drive to get things done but it wasn’t until after I started taking (the dopamine agonist) Sifrol that I started exhibiting obsessive compulsive disorder (OCD) behaviour. About two years ago, I developed a social relationship with someone who played the pokies. Within minutes of getting onto a poker machine I was mesmerised. I wasn’t enjoying it, but something had me convinced I was going to beat it. I started drawing down little bits of my pension, then big bits, then all of it. I won some, lost some but the overwhelming trend was in favour of the machines. Borrowing money from family and friends, I’d convinced myself I was just one spin from a major jackpot that would clear my debts.


Then it happened! I got a decent win, enough to clear the debt, but I couldn’t bring myself to leave - and lost the lot.

That was my first real wake-up call. But feeling ashamed just compelled me more. What’s it like to be addicted to gambling? It was like being sucked into a black hole of despondency: the more I lost, the more I convinced myself I was going to win. Then I’d get a reasonable win, but it wasn’t enough, I had to win more. When I ran out of people to borrow from, I starting ‘hocking’ just about anything I could carry. I’d convinced myself I deserved a really big win. When that didn’t happen, grief turned to panic. I’d kept the gambling hidden: I was going to be exposed for the fraud I’d become. It was about this time I was due to visit my neurologist. One thing I had learned over the years was always to be open and honest with my neurologist. The gambling problem had raised its ugly head just after my previous appointment. When I told him what had happened, he said the problem could have something to do with the Sifrol. Over the next couple of weeks, he weaned me off it. The result was truly amazing! Not only did the desire to gamble disappear, but the OCD simply evaporated.

For the first time in years I could get up in the middle of doing something and actually relax. However, I’d dug a pretty deep financial hole and still had commitments I had no idea how to honour. So though there was no longer the compulsion to gamble, it still looked like the only possible way to pay off my debts. I was pondering this one night while watching TV when an ad came on for the Gambler’s Helpline. What caught my eye was a reference to the fact that if gambling looks like your only way out of debt, that could be an indication of an addiction. So I rang and it was the best thing, next to talking to the neurologist, I did during this time. Appointments were set up with a gambling counsellor and a financial counsellor who over the next few months, both guided me out of my financial mess to the extent I was able to honour all my personal debts.

This was a nightmare I count myself extremely fortunate to have been able to wake up from; an experience that taught me just how vulnerable we can be to the side effects of the medications we take just to function. Things can change for better or worse for no apparent reason, so I cannot emphasise this enough - if you can’t talk to anyone else, always be open and honest with your neurologist or Parkinson’s practitioner. I thought I was powerless to deal with it until I spoke up!

THE LINK IS MADE Compulsive tendencies are linked to dopamine agonists, a type of drug which acts like the neurotransmitter dopamine, which people with Parkinson’s are unable to produce sufficient quantities of. Dopamine is centrally involved in the body’s reward system and it is believed that the activation of dopamine receptors by these drugs might fuel cravings and drive impulsive actions. Research has shown that up to 22% of people with Parkinson’s who take dopamine agonists experience impulsive and compulsive behaviour. Salvation Army financial counsellor Maria Turnbull was instrumental in identifying the link between medication prescribed to people with Parkinson’s and Restless Leg Syndrome.

This year, she was awarded an Order of Australia Medal for her service to the community. She remains committed to highlighting the need to be aware of the risk of compulsive behaviour when taking dopamine agonists.

WHAT TO LOOK FOR When it comes to gambling, Maria says there are some financial and emotional signs to consider: • Unexplained debt, lending/borrowing or sale of assets • Unpaid bills, disconnection notices, lack of food in the house • Losing money or wallet regularly and general secrecy around finances • Moodiness, anger or depression; manipulation by threat, lies or charm • Disappearing for amounts of time • Reduced contact with family and friends; avoidance of social events.

According to Maria, recognising problematic behaviour early can mean strategies can be put in place to address not only possibly altering medications that create the problematic side effects, but also to seek emotional and financial counselling support.

“Once the understanding about the effects of the medication is recognised and the fact that it’s the medication creating the problem and not the person, then positive steps can be made to address any concerns. “If you’ve been affected, you are not alone and it can be empowering to raise concerns about the impact of the side effects of the medications.” Maria said seeking assistance from a specialist financial counsellor who understands the impact of debt and gambling can help provide support and understanding as well as help to stabilise financial issues now and into the future. The National Debt Helpline is a not-for-profit service that helps people connect with professional financial counsellors who offer a free, confidential and non-judgmental service. See

Her efforts led to successful class actions against three pharmaceutical companies over failure to warn of possible compulsive behaviour side effects of their medication.

If you or someone you know is experiencing unusual compulsive behaviours, speak to your neurologist or Parkinson’s nurse as a matter of priority. Call our Health Information Line on 1800 644 189 for further support.


EXPERT OPINION THE GUT AND PARKINSON’S WITH DR SHEN-YANG LIM How does Parkinson’s impact the gastrointestinal (GI) tract?

Dr. Shen-Yang Lim MBBS (Melb) MD (Melb) FRACP FASc is a Neurologist and Professor at the University of Malaya, Malaysia, where he runs a busy clinical practice specializing in Parkinson’s and related disorders. He earned his medical and research doctorate degrees from the University of Melbourne and was admitted to Fellowship of the Royal Australasian College of Physicians after completing advanced training in adult Internal Medicine and Neurology at the Western and Royal Melbourne Hospitals. He is an active member of the International Parkinson & Movement Disorder Society (MDS) and currently serves as Secretary of the MDS Asian-Oceanian section and as a member of the MDS Task Force for Evidence-Based Medicine and MDS Task Force for Palliative Care in Movement Disorders.


GI symptoms such as constipation and abdominal bloating are very common (up to 80% of people with Parkinson’s may experience constipation). Involvement of the GI tract can also potentially affect the effectiveness of medications, such as impaired stomach emptying (gastroparesis) causing reduced absorption of Parkinson’s medications in the small intestine.

What complications can this cause? These GI symptoms can be quite troublesome and significantly impair quality of life. In fact, for some, problems such as constipation may be the primary Parkinson’s-related complaint. Reduced absorption of medications such as levodopa can result in reduced effectiveness of treatment. For some patients, this could translate to having delayed ON periods (eg, the dose takes more than 1 or 2 hours to work) or even dose failures.

Why is constipation so common? The exact reason is not yet fully understood, but likely relates to Parkinson’s directly affecting nerve cells in the gut. Another contributing factor could be the use of certain medications such as benzhexol/ trihexyphenidyl or amantadine, which have anticholinergic properties.

Are probiotics an effective support? So far, there has been one research study (a double-blind randomized clinical trial) on the use of probiotics in patients with Parkinson’s, showing that probiotics combined with fibre were effective in improving constipation, without adverse effects.

What role does diet play in Parkinson’s? Many patients with Parkinson’s experience alterations in their body weight. More commonly, this is weight loss which may be due to a variety of factors including loss of appetite, increased energy expenditure from involuntary movements (dyskinesia or tremor) and the way Parkinson’s affects parts of the brain that are important in the regulation of body weight. In other patients, excessive weight gain can be a problem, sometimes due to increased appetite related to treatment with dopamine agonist medication. In some patients, protein intake can interfere with the action of levodopa medication, although in most patients I am reluctant to advise protein restriction due to the common problem of unintended weight loss mentioned above. Thus, appropriate dietary intake in terms of the amount of calories and composition of the diet is important to try and maintain a healthy body weight.

Should certain types of foods be avoided or eaten regularly? Generally, a normal healthy diet is recommended without special restrictions. Although we do not have strong scientific evidence for a beneficial effect of antioxidants in Parkinson’s, foods that are high in these (or antioxidant supplements) can be considered, although I stress that research studies have not generally been able to convincingly demonstrate a useful effect from these supplements. It is hoped that in the future, with further advancements in scientific knowledge, doctors will be able to prescribe specific supplements or treatments based on an understanding of the specific cause(s) of Parkinson’s in a given patient. If a patient is losing a significant amount of weight, nutritional supplementation should be considered, and advice from a dietitian can be very helpful. Likewise, if there is excessive weight gain, consultation with a dietitian is also recommended.

Please explain the research around the presence of pervasive alphasynuclein deposits in the GI tract. The accumulation of alpha-synuclein deposits in specific areas of the brain has been recognised as one of the main defining features of Parkinson’s for around a century. More recently, these deposits have also been found in many parts of the GI tract (eg, the stomach and large intestine) of Parkinson’s patients. There have been some reports of this occurring in patients even before the onset of the typical motor symptoms of Parkinson’s. This observation, taken together with other recent research, have led to the suggestion that the GI tract may be involved in the development of Parkinson’s and even a hypothesis that Parkinson’s actually develops in the gut.

Other lines of evidence include: • Post mortem observations and laboratory experiments showing alphasynuclein can spread from one nerve cell to another • Experiments in animal models of Parkinson’s demonstrating spread of alpha-synuclein from nerve cells in the GI tract into the brain via an interconnection called the vagus nerve • Population-based research reporting a significantly lowered risk of developing Parkinson’s in people who have previously undergone resection of the vagus nerve (vagotomy) • Research suggesting that certain infections (eg, Helicobacter pylori) or types of bacterial composition in the GI tract (called the “microbiome”) may be related to Parkinson’s. So overall, the hypothesis that Parkinson’s may begin in the gut is an attractive one that is gaining traction, but the findings of these studies should be confirmed (eg, in larger populations of patients or independently replicated in other laboratories). It is hoped that this relatively new and exciting area of research will yield further insights into the condition and ultimately provide new and better ways to improve the lives of people living with Parkinson’s.

BEWARE THE BLOAT STAYING HEALTHY ON CHRISTMAS DAY It’s something many of us have experienced – that feeling that hits when you realise you’ve eaten (and maybe drank) a bit too much. For people living with Parkinson’s, there may be added considerations during and after eating including dyshphagia (swallowing difficulties) constipation and gastropaeresis (when food stays in the stomach longer than normal), as well as managing medication into the day.

Eat mindfully It might not be easy surrounded by others, but remember it can be difficult to eat and have a conversation at the same time. A good strategy can be to put your cutlery down when you are speaking and concentrate on eating when you are holding it.

Healthy snacking

The good news is that with a bit of planning and preparation, you can enjoy the festivities of Christmas lunch or dinner without too much impact on your body.

Sometimes it is the snacks on offer on Christmas Day that can be most tempting. Try to steer clear of the chips and instead look for options such as olives, nuts and vegetable sticks with low fat, vegetable or legume-based dips.

Talk it over

Limit your alcohol

If you are having Christmas away from home, talk to your host about dietary requirements, such as needing a choice of softer meals, finger foods or the timing of your medication. Most family and friends will be more than happy to accommodate you. Pre-planning can also save you having to explain to the cook on the day why you didn’t touch their roast turkey (which is a particularly difficult meat to ingest).

Let’s face it. Many of us love a drink on Christmas Day and unless you have been advised by your neurologist or healthcare professional not to do so, there’s no reason not to enjoy a glass or two. But remember Parkinson’s can affect your balance and alcohol can increase that risk. Remember to drink plenty of water too!

Plan for your medication While Christmas Day can change your routine, you still need to factor in your medication. Many people take levodopa with meals to minimise nausea. If you don’t feel comfortable asking, take a preferred snack with you. If necessary, you can also sip on a sweet, low protein drink (such as a fruit juice) when taking levodopa.

Stay upright As tempting as it may be, don’t find somewhere to lie down after eating your meal, particularly if you suffer from delayed gastric emptying or heartburn (GORD). Wait at least two hours before having a post-Christmas meal nap. Other tips for minimising discomfort include eating smaller, more frequent meals throughout the day and avoiding carbonated drinks.

Keep it in proportion It can be tempting when you see all that food on the table, but keep it in moderation so you don’t find yourself eating more than usual – and not feeling the best as a result. This does not mean you have to miss out. You can still try everything on offer, just be aware of portion sizes.

For any questions about preparing for Christmas, call our Health Information Line on 1800 644 189.


OUR COMPREHENSIVE RANGE OF PROGRAMS INCLUDE: Inpatient rehabilitation: We will assess and tailor the program to meet your needs, including medication reviews, falls and balance and reconditioning programs.

Leading the way in Parkinson’s rehabilitation

Outpatient rehabilitation programs include:

Call us - 9788 3333

• LSVT BIG® - intensive movement program • LSVT LOUD® - intensive voice and speech program • Big for Life® and Loud for Life® - participants must have completed the intensive LSVT® programs (listed above) first. • Group Outpatient Program - 12 week program incorporating balance; strength; endurance and coordination training as well as conditioning.

Referrals for inpatient and outpatient programs: A referral from your GP or Specialist is required for both inpatient and outpatient programs.

Health and Wellbeing therapies (no referral required for these): • Yoga and Wellness for Parkinson’s – Held onsite during school terms on Sunday afternoons 5pm - 6.30pm. Please book. • Music for Wellness – held onsite on Wednesday’s 1.30pm - 2.30pm. Please book. • Dancing with Parkinson’s – Held at MarShere Dance Studios in Chelsea Heights - call 9773 9773 to book. Cost is $15 per person/couple, per session.

For more information on our programs: 255-265 Cranbourne Rd, Frankston 3199 T. 03 9788 3333 F. 03 8790 8747 E. W.

ATYPICAL PARKINSON’S RESEARCH FOCUS ON PSP AND PHYSICAL ACTIVITY A new research project aims at broadening our understanding of factors that may influence participation in exercise and physical activity by people living with Progressive Supra-Nuclear Palsy (PSP) in order to better understand the support and programs people may need and want. The project, led by Dr Susan Slade, Senior Research Fellow at La Trobe University, was funded through the Argyrou Family and Atypical Fellowship, awarded at Parkinson’s Victoria’s 2018 InSearch lecture series.

It will look at identifying the barriers and enablers to participation in exercise therapy and physical activity for people living with PSP. “Exercise and physical activity are important for us all and have benefits for heart and lung fitness, control of blood pressure and cholesterol levels, improving balance and bone density (reducing the risk of falls and fractures) and prevention of type 2 diabetes,” Dr Slade said. “Research supports the effectiveness of exercise and physical activity for people living with Parkinson’s. It may also have benefits for people living with PSP, as well as for family members who join in.” The World Health Organisation recommends adults get a minimum of 30 minutes, 5 days per week – but for those with PSP, the aim is to be as physically active as your abilities and health allow and to be consistent and persistent in that activity. “For those over 65 years, there should also be a mix of balance and falls prevention exercises and strength training in some form,” Dr Slade said. However, she said it was particularly important for people with PSP to have a health professional assess and advise the best exercise program for the individual. “No one size fits all and it is likely that the way the exercises are done needs to be modified to meet individual needs.” Important to consider are preferences and capabilities. “Choose activities that are enjoyable, safe, effective, and accessible, provide variety and are achievable. This can include many forms of exercise and movement strategies, such as stretching, strengthening, weights, walking, exercise bike or cross trainer, martial arts, dancing and music-cued exercise and aquatic therapy.

“Exercise can be at home, in a chair, standing at a handrail, outside, with a supervised group, with an exercise partner, at a movement clinic or rehabilitation centre, at a gym or personal training studio or be incorporated into daily and recreational activities. Virtual reality and smart phone app-based programs can also be used.” As part of the project Dr Slade and her team will interview people with PSP, family members and carers and will look at what factors enable or prevent participation in physical activity, as well as identify information people need to increase participation. Project participants will contribute to the design and development of accessible activities for physical wellbeing, and information resources. “We will conduct an individual interview no longer than 60 minutes, where we will ask questions relating to beliefs about, and experiences of, exercise, activity participation and therapy. We want people to share their ideas, preferences and recommendations in a relaxed, private and informal environment.”

Dr Susan Slade trained as a Physiotherapist and is a Senior Postdoctoral Research Fellow at La Trobe University. Her research interests include exercise prescription, exploring the experiences and beliefs of care seekers and healthcare providers and translation and implementation into therapeutic care. Dr Slade has 45 publications in peer-reviewed journals and has presented her research findings at national and international conferences. If you are interested in participating in this research project, call or text Dr Slade on 0418 598 595 or via email


PERSONAL STORY SMILES REIGN AS HOWARD MEETS SHANE Former General Manager of Geelong Umpires, Howard Philpott, credits Australian actor Shane Jacobson and A Walk in the Park for re-discovering his passion for life following his Parkinson’s diagnosis. And at this year’s walk, Howard, who was diagnosed six years ago got to meet and have a chat with Shane, who was again on hand to welcome thousands of people to the 10th anniversary Walk.

In January 2017, Howard also stepped down from his role as Geelong Umpires General Manager, a role he had been filling since April 2016.

Howard, a married father of four, was working as a librarian/ information specialist and coaching boundary umpires in the Geelong Football League when he noticed something was not right.

“I became quite socially isolated and my weight dropped. My family became much more protective of me. It became my ‘hermit crab’ phase.” Then Howard discovered A Walk in the Park.

“I had just returned to work from 6 weeks’ holiday and was going through my emails when I started to experience symptoms similar to Repetitive Strain Injury (RSI). This was confirmed by an RSI specialist, but a couple of weeks later I lost the use of my left arm at football training.”

“I am a huge fan of Shane Jacobson and I loved to walk, so I pushed myself to get out and do it. I got tremendous support from the Umpires I have coached over the years and raised more than $1,700 for the walk last year.”

Howard was referred to a neurologist who suggested he use a drug called sinemet. His symptoms settled. “The neurologist then said only Parkinson’s responds like that (to sinemet).”

Howard said taking part in the walk made him realise he wasn’t the only one with the condition and that “there were lots of others facing far more challenges than I was and I should stop behaving like I was the only one.”

Howard’s progression was slow for the first three years and he kept the diagnosis to himself.

This year, Howard walked as a 2018 Walk Ambassador and was joined by family and friends, including his wife Merryn, and two of his four children Ciara and Cheyenne.

“Once the symptoms became more obvious and apparent, mostly related to movement, I became increasingly more isolated, certainly in the workplace. I felt very self-conscious and eventually resigned.

In a touching gesture, his other two children, Grant and Melody, who could not be with him also took time out to walk for their Dad – Grant in Italy and Melody in Tasmania.

If you need support following your Parkinson’s diagnosis, we are here to help. Call our Health Information Line on 1800 644 189.


“I continued coaching as that was a very different environment and I could mask my symptoms better and for longer. But once I had accepted the diagnosis I became extremely self-conscious and I didn’t go out much. I gave up the coaching as well.

Howard is now keen to get back into life to prove “I still have something to offer and to show my children that Parkinson’s doesn’t define you if you don’t let it.”

YOUNG ONSET RIDING OUT THE FESTIVE SEASON The festive season can be a time of great joy as families come together to eat, drink and enjoy each other’s company – but not always. The reality for some people is that the festive season – and the lead up to it – can be a time of increased anxiety. There are additional bills to pay, crowded shopping centres to visit, presents to wrap and Christmas lunch or dinner plans to make. Travelling away from home to be with family means careful medication planning and preparation is needed. Mental Health Accredited Social Worker and Parkinson’s counsellor Amanda Spillare offers some tips to help negotiate the festive season:

TAKE TIME OUT • The festive season is a time of celebration, but can also be a time of reinforced loneliness, isolation or obligation. Be kind to yourself in these situations. Remember to take time out and reward yourself with people and things that you enjoy doing as well. • Remember that you don’t need to answer any overly personal or invasive questioning about your Parkinson’s. Be ready in your own mind with what you want to, or don’t want to, say to others about your health status beforehand so you don’t feel caught out. • If you feel the stress levels rising, take time out for some deep breathing, or progressive muscle relaxations. There are some great apps like Headspace or Calm that you can try for free. Get out for a walk or book in a massage to help clear your mind and manage stress. • If you are away from loved ones, embracing this time to focus in on yourself and your self-care can be a healthy distraction. For example, book a small escape or pamper day.

Amanda Spillare offers a Parkinson’s specific counselling service. Call our Health Information Service on 1800 644 189 for more information. For 24 hour counselling and support across the festive season, call Lifeline on 13 11 14.

KNOW YOUR LIMITS AND PLAN AHEAD. • Having Parkinson’s means you may need to factor extra time for tasks such as shopping. Stressful situations can exacerbate symptoms, so shopping off-peak or after hours can help relieve potential stressors. Taking someone to help with physical tasks can also help alleviate stress. Try to be organised and use lists to make the best use of your time. • Online shopping is a great way to avoid the crowds and busy shopping centres. Do this well in advance to allow for shipping times. • Try not to overload your calendar with social functions and be kind to yourself. Allowing for rest days between functions and suggesting catch ups better suited to your specific symptoms is optimal, eg in less noisy environments or when your mobility is best. • Be assertive with others and don’t feel cornered into taking on responsibilities that will cause you stress and exhaustion.

REACHING OUT FOR HELP The festive season can also be a time of personal reflection and can evoke feelings of loss and grief over diagnosis, progression or changed relationships. If you are struggling personally with feelings of sadness or depression, consider: • reaching out to a close friend and share how you are feeling. Sometimes just saying things out loud to someone who cares can really help • joining a Parkinson’s Support Group to meet other people experiencing similar issues and form friendships • speaking to your GP and linking into more formal supports, such as a counsellor or psychologist under a Mental Health Care Plan.


BENEFITS OF PEER SUPPORT Diagnosis of a condition such as Parkinson’s can often lead to feelings of isolation – family and friends can support you, but how can they truly understand what you’re going through? That is where peer support can help. In February 2018, the Australian Health Policy Collaboration at Victoria University report, The State of Self Care in Australia, found people who attend illness-affiliated peer support groups better manage their chronic conditions, with researching showing: • better health outcomes than those relying solely on medical intervention • improved access and exposure to additional health services, as well as greater confidence in individuals in relation to their treatment. According to the report, “peer support groups are considered assets to the healthcare system, because they provide a sense of community for people whose diagnosis has ostracised them from the mainstream.”

“Peer support groups can offer a culture of health and ability as opposed to a culture of illness and disability.”

Judy Hayes from Young@Park Barwon Region said the importance of having ‘Parky’ friends could not be underestimated. “I believe only another ‘Parky’ can truly understand what it is like to have this life-altering condition. I have a great support network with family and friends, but I never underestimate the value of having the support of my ‘Parky’ pals.”

What to expect? Activities generally undertaken by a Parkinson’s Peer Support Group include: • Sharing information and solutions to common situations • Hearing from health care professionals about developments in medication, treatment options and research • Discussing experiences and feelings • Taking part in community awareness raising activities • Enjoying company and friendship with others in a similar situation. Some of our Peer Support Groups offer special focus support, including Young@Park, DBS, PSP and Infused Therapies groups. A number of groups are activity based, including ParkinSong, Dance for Parkinson’s and Paint for Parkinson’s groups also operate under the Peer Support banner.

Parkinson’s Victoria currently supports 72 Peer Support Groups throughout Victoria. They range in size from 12 to 40 and each is unique in style. By joining a peer support group, you can gain a sense of community and build a support system, expand your knowledge and have a place to talk openly and vent frustrations and fears. You can also access resources and share information about treatment experiences.

Stay On-Time!

If you would like to learn more about joining a Peer Support group, contact our Health Information Service on 1800 644 189.


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In June, Kevin was recognised for his contribution to the sport, presented with two medals which he told the Wimmera Mail Times, “tops everything else I’ve done in the sport.” Kevin was presented with a Historical Achievement Medal, considered to be the highest honour given out by the Australian Archery Museum, and the Perce Stokan Medal for service to archery. Now aged 81, Kevin got his first taste of archery at a local demonstration by the Horsham Company of Archers in 1954. By 1961, he took part in the first ever national titles in Perth and returned home a national champion.









Kevin also won five state championships, was named the Amateur Sports Club of Victoria’s Sportsman of the Year in 1977 and in 1985, organised Australia’s first ever pro-am indoor championships, which attracted 200 amateur archers to Horsham and was televised on the ABC. Kevin and Lyn are still heavily involved in the Horsham Company of Archers. Lyn is Secretary/Treasurer and despite having Parkinson’s since 2002, Kevin still coaches and is undergoing physiotherapy in the hope of being able to actively participate in the sport he loves so much. To read the full story about Kevin, go to: au/story/5553821/kevin-matuschkas-passion-for-archerylegends-of-yesterday/

Do you have a story to tell? Share your successes and frustrations with others in the Parkinson’s community. We would love to hear from you. Email your story to


ABOUT PARKINSON’S VICTORIA Parkinson’s Victoria raises awareness and funds for services and research to improve the quality of life for 27,000 people living with Parkinson’s in Victoria. Office: 587 Canterbury Road Surrey Hills VIC 3127 Phone: (03) 8809 0400 Free call: 1800 644 189 Email: ABN: 59 604 001 176 Website: Connect with us! Facebook Instagram LinkedIn’s-victoria-inc Twitter YouTube

ABOUT INMOTION InMotion is an information service of Parkinson’s Victoria Ltd. Page 19 photo courtesy of The Wimmera Mail Times. Page 9 photos courtesy of The Weekly Advertiser (Horsham) and The Bendigo Advertiser (Bendigo). Remaining photos from this issue are used under license from a range of royalty free websites and personal albums. Publisher: Parkinson’s Victoria Ltd Print post approved: 100011035 Frequency: InMotion is published four times a year and distributed to members of Parkinson’s Victoria. Membership enquiries: T: (03) 8809 0400 E: Advertising enquiries: T: (03) 8809 0400 E: General disclaimer: Information and articles contained in InMotion are intended to provide the reader with useful and accurate information of a general nature. While every effort has been made to ensure information is accurate and up-to-date at the time of publication, Parkinson’s Victoria Inc. does not guarantee correctness or completeness of information. Information is not intended to substitute for medical or legal advice nor is Parkinson’s Victoria Inc. recommending legal or medical advice. Readers are advised to seek their own medical or legal advice as appropriate. Advertising disclaimer: Advertisements appearing in this publication are provided to assist consumers locate and purchase suitable products and services. Parkinson’s Victoria Inc. does not endorse any one product / service over another, nor does it receive commission on sale of items. Consumers are encouraged to seek advice from their health care or allied health professionals and discuss the supplier’s terms and conditions when purchasing a product or service. Parkinson’s Victoria is not liable in the event that a product is not satisfactory. Editorial policy: While submissions for inclusion in InMotion are welcome, the final decision rests with the editor. All submissions are subject to the publisher’s editorial guidelines and may be edited for space or clarity.

UPCOMING EVENTS Parkinson’s Victoria raises awareness and funds for services and research that improves the quality of life for 27,000 people with Parkinson’s in Victoria. To stay up-to-date with upcoming events, go to: DATE




BOOKINGS Join the inaugural meeting of a new Peer Support Group for people living in Wonthaggi and surrounds.

Friday 16 November

Peer Support Group


1pm – 3pm

Saturday 24 November

Recently Diagnosed Seminar

Surrey Hills

9.30am – 1.15pm support-for-you/events

Monday 26 November

Annual General Meeting

Melbourne CBD

12.30pm – 2.30pm

Parkinson’s Victoria members only. RSVP essential. Contact us on 8809 0400 or email

Thursday 6 December

Infused Therapies Support Group

Surrey Hills

1pm – 3pm

Register your attendance by calling 1800 644 189

Friday 15 February 2019

Community Seminar



Save the date.

CHRISTMAS CLOSURE Parkinson’s Victoria will be closed on the following days: Tuesday 25 December (Christmas Day) Wednesday 26 December (Boxing Day) Thursday 27 December Friday 28 December Monday 31 December Tuesday 1 January 2019 (New Years Day) During this time, a member of our health team will check an answering service and return any urgent calls. If you require emergency assistance, call ‘000’ or go to your nearest hospital. We will re-open on Wednesday 2 January 2019.

MEDICAL COOLING CONCESSION The Medical Cooling Concession provides a 17.5% discount on summer electricity costs for concession cardholders where a member of the family has Parkinson’s or other medical condition that affects the body’s ability to regulate temperature. It is available from 1 November to 30 April each year and is provided in addition to the Annual Electricity Concession.

Eligibility To be eligible, you must hold at least one of the following concession – a Pensioner Concession Card, a Health Care Card or a DVA Gold Card.

How to apply For an application form, phone your electricity retailer or the Concessions information line on 1800 658 521 (toll free). The application form needs to be completed and signed by your doctor confirming your medical condition. Once completed, you will need to forward the form to your electricity retailer, who will apply the discount to your bill. Further information can be found at