The Shake It Up Show
The Shake It Up Show is a podcast about Parkinson’s disease, hosted by Shake It Up Australia ambassador Amy Ruffle. We’ll be talking to a range of people whose lives have been impacted by Parkinson’s disease and hear their stories.
This series is about the different experiences in the Parkinson’s community, discussing a range of things including the road to diagnosis, coping with change, different therapies and interventions, misconceptions and everything in between. We’ll be hearing from people living with Parkinson’s, people with Parkinson’s in their family or community, researchers working on Parkinson’s treatments, and more.
Subscribe to the podcast on Spotify and Apple.
To support Shake It Up Australia, you can get involved or donate today.
Episode One
Clyde Campbell
Clyde shares his journey from his own Parkinson’s diagnosis to founding Shake It Up Australia. He spoke to Amy about some of the ground-breaking work currently being funded by the Foundation, his approach to life, and his advice for other people living with Parkinson’s.
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“I always say – you’ve got to enjoy the present, you’ve got to design the future, and I need to make an incredible difference to everyone close to me. If I do all those three things, it makes me happy.”
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Episode Two
Rob Ruffle
On this special episode, Amy speaks with her father Rob Ruffle. Rob shares his Parkinson’s story, the symptoms he initially experienced that lead to his diagnosis and interventions he has found helpful.
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“I’m hoping I can do my bit for Parkinson’s research, for Shake It Up Foundation and to hopefully help someone else who might be going through a similar situation.”
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Episode Three
Sandra Gerschwitz
Sandra, who was diagnosed with Parkinson’s at age 45, shares her journey to get doctors to take her concerns seriously, and why she feels it’s so crucial to smash the stigma.
Sandra is preparing to trek Everest with Trek Ready Himalayas, so we also hear from Gary Gillett about running annual treks to raise money for Parkinson’s research, and what’s involved.
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“Don’t be ashamed of it. Search out and find groups. I have met some amazing people… that’s a positive that has come out of this disease. Get out there, learn about it, there’s so much support there. Just ask and don’t stop asking.”
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Episode Four
Professor Carolyn Sue AM
Amy speaks with Professor Carolyn Sue AM from NeuRA about her ground-breaking Nix gene therapy research. In this study, Professor Sue and her team will explore if the Nix protein restores mitophagy and mitochondrial function in people with the PINK1/PARKIN gene mutation.
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“When brain cells start degenerating it’s because they lose energy, just like if you have a mobile phone that loses charge. Energy fuels active things like making the synapses work, it allows proteins and molecules to be transported around the cells and helps get rid of the rubbish that stops the cell from working properly. In Parkinson’s disease, all of those processes are slowly or gradually lost. This new treatment works on a new way to recharge the batteries.”
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Episode Five
Kristy Johnson
On this episode, Amy speaks with fellow Shake It Up ambassador Kristy Johnson about her mother’s experience with Parkinson’s and Lewy Body Dementia, her family’s experience in their role as carers for a loved one with Parkinson’s, and her advice for other carers to support their own health and wellbeing.
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“Carers also need to be cared for. Their mental health, their physical health, is just as important… make sure you reach out for help, whether it’s a carers support group online, or just talk to a friend.”
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Episode Six
Glenn Gloury
Retired Principal and sports enthusiast Glenn Gloury shares with us his Parkinson’s story, from initial symptoms to the treatments and exercise he has found helpful, and his advice for others dealing with a recent diagnosis of PD.
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“You’ll need to go through a grieving stage… But once you get through that, you need to accept it and take every day as it comes. Keep moving, keep doing whatever you possibly can that you were doing before. Talk to people about it, talk to your family. Don’t be afraid to let people know that you do have Parkinson’s.”
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Episode Seven
Joanne Colquhoun
On this episode, Joanne shares her Parkinson’s story, her experience with Deep Brain Stimulation, and her fundraising adventures hosting karaoke nights to support Shake It Up and Parkinson’s research.
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“Don’t put off doing something and think, oh I’ll do that when I retire. Do it when you can, just get things done. I’m so grateful that I have done lots of things that I wanted to do.”
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Episode Eight
Emma Tinkler
On this episode, we speak to the joyous Emma Tinkler about living with both MS and Parkinson’s, the challenges of misdiagnosis, and the mind and body based interventions she has found helpful. You can follow her journey on instagram @livingwithpdandms
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“Talking about Parkinson’s helps me put a positive spin on my disease. It’s a really fantastic way of trying to make a positive impact.”
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Episode Nine
Professor Malcolm Horne
On this episode we are joined by Professor Malcolm Horne to talk about his career in Parkinson’s research, developments he has seen in his time, emerging treatment options and what he hopes to see in the future.
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“The PKG, a device for measuring Parkinson’s disease…measures information and allows us to accurately quantify the level of disturbance of movement that occurs in Parkinson’s, and it’s relationship to the use of medications.”
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Episode Ten
Christine Jeyachandran
On this episode, we speak to Christine about being diagnosed with Parkinson’s while she was on the other side of the world and how gymnastics has changed her life.
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“We really need to keep raising money for a cure. As I get on with my Parkinson’s, drugs are less effective… we need to find more treatments to stop this disease progressing”
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Episode Eleven
Louise Capper
On this week’s episode, we speak to Louise about her Parkinson’s diagnosis, the process of getting NDIS funding and her recent Deep Brain Stimulation surgery.
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“My first hint was when I went to point at a newspaper article for my husband and he said “Look, your finger’s shaking”. Then I noticed my typing at work was becoming weird, I was double-bouncing on the keyboard, and I couldn’t move the mouse as efficiently. It started affecting my work.”
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Episode Twelve
Rob Ruffle Returns
Returning guest Rob Ruffle shares the first of regulars updates on how things are going for him and his Parkinson’s journey. People with Parkinson’s know that it is an ever-evolving and changing disease, particularly when it comes to experience with treatments and presentation of symptoms. Host Amy talks to Rob about the changing nature of the disease and the importance of monitoring treatment plans and consulting your doctor about adjustments.
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“I would suggest to anyone who is not feeling the way they used to, or that medication has changed their persona, to go back to their doctor or neurologist to discuss it.”
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Episode Thirteen
Phoebes Garland
This week’s guest is our ambassador Phoebes Garland, who speaks with Amy about her experience in spreading awareness, compassion and hope for people living with Parkinson’s, her role supporting her business partner Rob, and their Parkinson’s journey together.
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“The Shake It Up ambassadorship has opened the conversation for people to come forward and find out more information. If I can give people a little bit of hope that there is support out there, that makes me really happy.”
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Episode Fourteen
Dilruk Jayasinha
Comedian, actor and Shake It Up ambassador Dilruk shares his experience with his Dad’s Parkinson’s diagnosis and symptoms, opens up about why he’s an advocate for seeking mental health support, and tells Amy about his time on I’m A Celebrity Get Me Out Of Here Australia and Weakest Link Australia, where he raised nation-wide awareness and almost $25,000 for Parkinson’s.
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“I’ve been trying to allow him the space to talk about it openly, to allow him to use the words sad, depressed, frustrated, angry… whatever the emotions are that come with this disease and now it’s progression. The more you speak about it, the stronger you get. That’s how you realise you don’t have to feel ashamed about it.”
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Episode Fifteen
Tony and Wendy
On this episode, we speak to Tony and Wendy from ‘The Adventure Is’ to talk about Tony’s Parkinson’s diagnosis and their trip across Australia to raise money and awareness for PD. You can follow their adventure at www.theadventureis.com.au
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“When I was diagnosed with Parkinson’s disease, we decided we needed a change of life, we loved exploring and adventure and so we thought let’s start travelling! We found Shake It Up and we thought what a great way of raising money for research… we wanted to focus on finding a cure.”
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Episode Sixteen
Ash Griggs
On this week’s episode, we speak to Ash Griggs about his connection to Parkinson’s, his incredible fundraising efforts this year and how loved ones can best support someone living with the disease.
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“My advice [for anyone caring for someone recently diagnosed] would be to get a better understanding of what to expect…understand what’s happening in the world of science. I’m sure there’ll be breakthroughs to come. That’s why we all do it, in terms of fundraising, in the hopes of a breakthrough.”
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Episode Seventeen
Sandi Gerschwitz Returns
On this week’s episode, we speak to return guest Sandi about her big trek, her experience completing the adventure as someone with Young Onset Parkinson’s and her perspective on being underestimated as someone living with PD.
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“Being out in the environment, out of the concrete jungle… the natural landscape, the air, the people… we’d laugh, we’d cry, we went through all the emotions. It was just amazing.”
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Episode Eighteen
Mark vanHamond
On this week’s episode, we speak to Mark about his incredible fundraising efforts to raise $38,000 (or $1k for every person diagnosed daily with Parkinson’s in Australia) by participating in the Sydney Marathon, his dad’s Parkinson’s diagnosis and how his family is supporting him.
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“It was an opportunity to do something with impact… the number that really stood out was the 38 people diagnosed per day with Parkinson’s in Australia. It was a case of really trying to drive this opportunity to do something more.”
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Episode Nineteen
Andrew Wild
Physiotherapist and the Director of Wild Physio Fitness Andrew Wild talks to us about his focus on working with people with Young Onset Parkinson’s Disease, treatment strategies and exercise for people with YOPD.
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“I like to refer to lifting weights as the elixir of youth. Maintaining muscle mass as we age is so important, and so is bone mineral density. And they are two great reasons to exercise as we age, rather than just focusing on aesthetics.”
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Episode Twenty
Andy Dickinson
On this week’s episode, we speak with Andy about his long journey to a Parkinson’s diagnosis, his approach to life with PD, his lifetime of experience in martial arts and his new book ‘The Warrior Upgrade’.
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“I dive into the challenges… I go and see my friends, I talk to my family, I indulge in life completely. I write books, I write blog posts, I just get stuck right into it.”
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Episode Twenty One
J Solle
On this week’s episode, we were thrilled to welcome J Solle, Director, Clinical Research at The Michael J. Fox Foundation for Parkinson’s Research to tell Amy all about the Global Parkinson’s Genetics Program (GP2). They discuss the importance of including under-represented groups in research, the work of the QIMR Berghofer Medical Research Institute and the APGS to contribute to global Parkinson’s genetics research.
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“Diversity in research is so important… The structure and the genetics of Parkinson’s disease may look different in different ancestries, so we really have to query that to understand what it means for people with Parkinson’s… we’re starting to think about what this could mean for precision medicine.”
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Episode Twenty Two
Sarah Buckpitt
On this week’s episode we speak to Sarah Buckpitt, the creator of the Pedal for Parkinson’s Tour – which sees riders cycle a pre-planned, fully supported, 500km loop over five days around Tasmania, all whilst bringing awareness to Parkinson’s Disease and raising funds along the way.
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“So many people’s lives, and so many families, have been touched by Parkinson’s. I think that’s why Pedal for Parkinson’s reached so many people, because so many have dealt with it either first or second-hand, and have seen a loved one or a friend go through it. And it’s devastating.”
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Episode Twenty Three
Robyn Higgins
On this week’s episode, we speak to the energizer bunny herself Robyn Higgins about her Parkinson’s journey, her incredibly varied exercise and community engagement schedule, and a big upcoming fundraising ride!
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“Find people who are positive and surround yourself with people who will encourage and support you. Never give up…the whole point of dealing with all this is to live the best life you can, with the situation you’re in. I’d say persistence pays off, so keep on trying.”
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Episode Twenty Four
Sean Atkinson
On this week’s episode, we speak to Sean Atkinson, who was diagnosed with Early Onset Parkinson’s Disease in January of this year after a 12-month journey to receiving his diagnosis. He will be hiking to Mt Everest base camp in Jan 2024 as a way to raise funds and awareness for Shake It Up.
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“Don’t let it control your life. When you’re young and you’ve got things you want to do, you have to live your life, and live your best life… The disease is there, it’s going to challenge you and make your life a little bit harder, but don’t let it stop you from doing things you want to, from going overseas, or hiking a mountain to riding a bike.“
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Episode Twenty Five
Kylie Christian
On this week’s episode, we speak with Kylie Christian about her Young Onset Parkinson’s Disease diagnosis, experience with local community fundraising, and her perspective on the importance of being open about her diagnosis. She also talks to Amy about competing in International Para Equestrian and her training for selection in the upcoming Paris Paralympic games.
“The hardest thing I find is the mental side of it. Knowing, because it is progressive, what my future potentially looks like. You’re not supposed to know your future… The more you can be honest and open and talk about it, and let people know what you’re struggling with, the easier it becomes.“
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Episode Twenty Six
Scott and Olivia Bailey
On this week’s episode, we speak to Scott and Olivia Bailey about Scott’s diagnosis of Young Onset Parkinson’s Disease when he was 39, and Olivia’s fundraising efforts, including an upcoming Point to Pinnacle event to raise money and awareness for Parkinson’s.
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“As a family we just do it together, and do what needs to be done. We work out a way… We have a ‘let’s get on with it’ attitude with our life. We might not have been dealt the best cards but we’ll just play them and get on with it. With Parkinson’s, you want understanding, but you don’t want sympathy.”
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Q&A with Amy Ruffle
Shake It Up ambassador Amy Ruffle is a woman of many talents. She’s an actor, producer, comedian, and now – host of the Shake It Up Show, a new podcast series launching this April for Parkinson’s Awareness Month. We had a chat with Amy to learn about the world of podcasting and share what you can expect from the Shake It Up Show.
Learn about The Shake It Up Show
