More than 27,000 Victorians are living with Parkinson's right now, with numbers increasing by 4% every year. For those diagnosed there is no known cure.
By taking a Walk in the Park at Federation Square Melbourne at 11am Sunday 26th August, 2012, everyone can help raise awareness and much needed funds for Parkinson's Victoria, the peak body representing the needs and interests of people living with Parkinson's in Victoria.
Federation Square will be a sea of people as an estimated 2500 friends, family, supporters and people living with Parkinson's from across Victoria gather to make a real difference in the lives of people living with Parkinson's.
Shane Jacobson, Parkinson's Victoria Ambassador said "This great event is a simple way to help raise much needed funds for Parkinson's Victoria. It really is a Walk in the Park to make a difference in someone's life."
It's a fun way to show your support and even the family pooch is welcome. For every valuable dollar raised 50% will go towards research into this debilitating disease and the other 50% will fund support services for people living with Parkinson's, their families and carers.
Parkinson's Victoria's Walk in the Park has become an annual event since 2009 and has gone from strength to strength each year.
The Walk has a symbolic meaning as Parkinson's is a movement disorder and walking, while often challenging for some, supports the goal of staying fit, healthy and active.
To register to walk and fundraise go to www.parkinsonswalk.com.au
The Walk in the Park event will come just after Michael J Fox's visit to Australia for the Visionary Series where he will star in "A Funny Thing Happened on the Way to the Future" and talk at length about living with Parkinson's disease.
Parkinson's Victoria Walk in the Park 2012
Sunday August 26th, 2012
Federation Square, Corner of Swanston and Flinders Street, Melbourne
Registration: $30 (adult early bird). Children, Senior/Health Care Card Holder prices also available.
Children four and under free.
Registration on the day from 8.30am with the walk commencing at 11.00am.
Parkinson's Victoria is a not-for-profit organisation which provides information to the community about Parkinson's, coordinates a network of peer support groups, and promotes the positive aspects of living with Parkinson's, not coping in silence. The organisation is also active in advocacy initiatives to improve funding and services, and also funds and supports Parkinson's research.
Parkinson's Victoria promotes the right of all people living with Parkinson's to comprehensive and excellent services which encourage independence and quality of life. The organisation has been supporting the community since 1981.
Fundraising or donating to the Walk in the Park helps Parkinson's Victoria continue to provide Help for Today, and Hope for Tomorrow: For every dollar raised, 50 percent is directed towards funding research into Parkinson's. The remaining 50 percent helps fund the support and information services of Parkinson's Victoria.
The Melbourne Fringe season of The Unstoppable, Unsung Story of Shaky M
Venue: Revolt: 12 Elizabeth St, Kensington
2-14th October 2012 (No Mondays)
$23 full/ $18 Concession
Question: What is your play The Unstoppable, Unsung Story of Shaky M about?
Rowena Hutson: The Unstoppable, Unsung Story of Shaky M is a dark, comic exploration of isolation and the creative ways Shaky M finds to circumnavigate that boundary. Although it's based on several years of research into Parkinson's Disease, specifically Young Onset Parkinson's Disease, disease is not Shaky M's story. Neither is her story a literal telling of any of those memoirs I read throughout those years of research. Rather, Shaky M's story has come to be one of simple desires and great escapes. An imagined story of how one might achieve the 'Conquest of Happiness' when everything is not alright; when one is confined to the margins. It's the tale of how an adventurous soul might explode into the night sky in a rocket of their own making and feast on the moon. It is a story of how an adult, who by virtue of their situation finds themselves alone and stripped of their everyday armour, might come out in a blaze of fire and dancing to claim their fate. It's a story of joy and silliness, absurdity, laughter and loneliness in the face of darkness.
Question: What inspired you to write the play The Unstoppable, Unsung Story of Shaky M?
Rowena Hutson: 'Write' might not be quite the right word to describe the process of creating Shaky M, as the character is virtually silent! However, I was inspired to begin investigating and creating Shaky M's story after several years of research into Young Onset Parkinson's Disease, which I undertook in an effort to understand and empathise with the ongoing experiences of my much loved and marvellous mother. The more I read, the more I found the threads of lives that had been turned upside down and yet still hung together, just in a new and often absurd make-up. I was startled, and then cheered, by the all-pervading humour of these memoirs. The little daily jokes which turned symptoms on their head, or the shocked laughter at ending up in another bizarre place after a terrible fall. I fell in love with, and admired this defiant hilarity. And thus, the first inklings of Shaky M came into being.
Question: As a carer what is a typical day like, for you?
Rowena Hutson: In the world of Parkinson's there is rarely anything you could describe as 'typical' - because it's such an elusive, ever-changing experience for both the person living with it, and those who love and care for that person. But usually a day hanging out with Mum will consist of a range of activities and silly moments that we share because we love laughing with and at each other. Breakfast means copious cups of tea, a chat about the news and a giggle over the oddspot. In the mid-morning one of Mum's lovely carers will arrive to read her the Guardian Weekly, whilst I catch up on a bit of work. In the afternoon if the weather is good enough and we're both feeling up to it, a walk (and wheel - as Mum will be in the wheelchair) through the park with our hilariously big-eared sausage dog Zorro, and then maybe a (we'd like to think) much-deserved glass of wine at our favourite cafe. Late afternoons are when we indulge in our mutual passion for period crime and David Attenborough and curl up with Zorro to watch a Marple or Planet Earth. 5 o'clock is G+T time, and then Mum will bring her walker into the kitchen and we'll chat while I make dinner.
Most days will also consist of my continuing attempts to convince Mum I'm a good (read: excitable) dancer (with subsequent dancing displays to Leo Sayer) and Mum's complete and utter verbal destruction of my dancing prowess. She will sometimes deign to show me how it's done, which is pretty amazing.
Question: Can you talk us through some of your mother, Susan's symptoms?
Rowena Hutson: Parkinson's is a strange and confusing disease. It's utterly individual to each person who lives with it, and their symptoms will vary to an extraordinary degree. The longer you live with it, the more you also have to contend with the side-effects of the medication, which in turn creates other symptoms. One of the most fascinating things I've learned is that imagination can sometimes literally help to overcome some of the symptoms. 'Freezing' is one of the most common symptoms of Parkinson's - where the person might be walking and suddenly find themselves frozen in place, as if their feet have been stuck to the ground. Except they still have the forward-moving intention of their walk - which means it can be easy for them to topple over and have a fall. Something I learnt through my talks with the folk at Parkinson's Victoria is an amazing and frighteningly simple imaginative trick you can use to help break the freeze and kick-start a normal walking rhythm, and is something we use to help Mum all the time. When Mum freezes mid-walk, all we have to do is say 'Step over the line' and draw a line on the floor with our toe. It's so simple, but it works literally like magic! I'm not able to comment knowledgeably on the science of it - but as far as my layman's understanding of it goes - it works because it helps Mum, or anyone with Parkinson's create a new, conscious pathway through the brain to induce movement, and by-pass the cells that aren't working anymore because of their lack of the chemical dopamine.
Question: Do you remember when and how your mother was diagnosed with Parkinson's?
Rowena Hutson: I was pretty young when Mum was diagnosed, so I wasn't aware of the actual moment when it happened. But I do remember noticing her hand shaking at the dinner table and in my youth and naivety telling her everything was ok, and there was nothing to be afraid of. It was several years before I understood that her shaking hand was a sign of something quite different.
Question: What's a typical day like, for your mum?
Rowena Hutson: By virtue of her situation, Mum leads what some people might think are a pretty simple life these days. However within it are all her interests and passions. Most mornings a carer comes to hang out with Mum. We simply couldn't do without these wonderful and lovely folk. They read the Guardian Weekly to her so she can catch up on interesting international news, and then they read the week's new Medical Journals which have always been one of Mum's reading staples (she was a GP before she retired). Afternoons vary. We try to get out of the house if the weather is good enough and go to the park or a local cafe. Mum is an avid movie fan, so we are constantly sourcing her interesting new movies and shows to satisfy her sense of humour and love of good drama. She is also crazy about Charles Dickens, so we've got every work of his on DVD and Talking Book to satisfy demand! On weekends Mum and Dad head to our beach house where they have a usual table at the local gastro-pub, and they can indulge in the excellent cocktails they make there. Friends and family try to come and visit regularly, and Mum is generally on the phone to someone who has called for a chat and to use her excellent listening and diplomatic skills to help them solve a problem. We obviously have bad days. But most days are good ones because we've been able to laugh about something, watch an amazing movie, or enjoy arguing about the pros and cons of Owen Wilson.
Question: What medication and treatment does your mother take?
Rowena Hutson: The treatment of Parkinson's varies and is entirely individual to each person. But the staple of the treatment is taking some form of synthetic Dopamine - the chemical in the brain which helps control unconscious movement and which people with Parkinson's Disease lack (or have very little of).
Question: How has your life changed since the diagnoses?
Rowena Hutson: I would like to think that because of my years of research into the disease, my developing and ever-strengthening relationship with the folks at Parkinson's Victoria, and through living with my Mum, I've become a more compassionate, empathetic person. Parkinson's is such a strange disease. You can live with it for so long, and it changes your life and the lives of those around you. I would never have created Shaky M if I hadn't gone in search of further knowledge to try and understand what Mum lives with every day. And in doing so, I would never have been able to share my craft so viscerally and emotionally with my family and friends. Of course, if I had a choice, I wouldn't want Mum to have to live with 'Parky'. But because she does have to, and it's a part of our lives, I'd like to think that we've embraced the changes and sought out new and creative ways to create a high quality of life for all of us as a family.
Question: What is your goal and main message for The Unstoppable, Unsung Story of Shaky M?
Rowena Hutson: Ultimately, I think Shaky M is about the universality of our common humanity. Which sounds very grand and a little pompous - but I believe it. It's about a woman who is isolated and lonely because she lives with something no one else can feel or truly understand - but who is brave enough to admit that she's lonely and use her considerable imagination to try and change that. Everyone can empathise with feeling lonely or isolated at some point in their life - and through drawing people into her story through this shared experience Shaky M can then also make us as the audience question our own assumptions about someone who looks and acts so differently to us. It's also about finding the humour in the absurdities life throw at us, and using that laughter and humour to find joy and happiness even when things might look grim from the outside.
Question: What's next for The Unstoppable, Unsung Story of Shaky M?
Rowena Hutson: Next up Shaky M is heading to the Melbourne Fringe Festival in October. And then she's putting on her travelling clothes and heading to Adelaide Fringe in March! And I can tell you - she is super excited!
Interview by Brooke Hunter