I entered a video competition at UNSW School of Population Health and I didn’t win it but they had a popularity competition on facebook and so I announced it on twitter and social media and it won the popular vote.
I am always trying to get Parkinson’s in the media, get people understanding and potentially inspired to help the community in some way.
20% of Aussies affected by Parkinson’s are under 50 at diagnosis, like me. Parkinson’s is advancing all over the world! It’s prevalence has doubled in the last 25 years and it will double again in the next 20 years unless we act (Dorsey et al, 2018).
I hope young researchers and undergraduates will consider Parkinson’s disease as a research topic. We need to end Parkinson’s Disease – an insidious and disabling global pandemic!
Welcome to my blog those who are new. People ask me a lot of questions but these are the ones that come up over and over again so this is a quick blog answering 5 questions.
Were you a gymnast as a kid? Is that why you can do a handstand? I never did gymnastics as a kid but I did do handstands in the playground.
Did your coach come back? (you have to watch Handstand for Parkinson’s to understand this question) My coach did come back after leaving me and it was pretty quick, as soon as I finished editing the video. It was more like a break but it was devastating at the time.
Why did you do gymnastics? I had been watching my twins do gymnastics since they were 4 so the gymnastics facility was a location I knew well and the coach was my girls coach which made it easier for me to ask him to train me as I knew he had an adult class. There are no Parkinson’s disease physiotherapists or exercise classes where I live, so I was pretty desperate to find something to help my body move better. I knew that I needed accountability and a tough coach to push me along. I didn’t know it was going to work so well at all but retrospectively one sees that balance, coordination and strength are features of gymnastics so it make sense. I do mainly physical preparation rather than tricks and it took 9 months before I tried a handstand.
You must train every day for long periods of time? I started off with 45 minutes, 3 times a week and then I raised it to an hour and eventually 3 times a week, 2 hours a day. Often I’d do an extra low key session on Saturdays. It is a solid commitment I think it’s doable and worth it.
Does your coach know anything about Parkinson’s disease? Is he trained? My coach didn’t know much about Parkinson’s disease, so I explained the basics. But he did have a friend who had had the disease and who he told me stories about. I gave him some things to read and he might have investigated further. I’d done a PD warrior Course as a patient in Australia so that gave me some good principles but the coach really did what he usually does with gymnasts making adjustments for sore knees etc and lowered his expectations. He seemed to have a good eye for what needed work.
I started the “Parkinson’s secrets to living successfully” video project kind of on a whim. I put it out there as an idea on twitter to see what responses I’d get. It wasn’t long before I got a few interested people responding and sending me their videos. The responses confirmed my hutch that exercise is beneficial and the message worth sharing with the Parkinson’s community.
Secondly I felt the mix of people would really communicate and connect with more people.
A variety of ages and ages of onset of PD from 30s to 60s
A variety of shapes and sizes
A variety of sports and exercise styles and intensity
A variety of English speaking countries – USA, Canadian, Wales, Scotland, England, New Zealand and Australia.
A variety of experiences, and
all united in the benefits of exercise in treating Parkinson’s disease!
The third realization was that this project was actually going to take a lot of work. I spent a lot of time editing the videos and asking people to send more information or more photos and move video footage. It has all been worth it and thankfully the whole team has been very obliging and positive through the whole process.
The fourth realisation was that we wanted to create a directory of PD organisations that people who had been inspired could contact. Each of the team provided me with details of the Parkinson’s associations and organisations that had helped them and in their context/experience.
And the fifth realisation was that each of the team was willing to share the video with their contacts and organisations related to Parkinson’s. It is thanks to them that the video I has had 1200 views in just over 3 weeks! Video 2 has had over 400 too.
As I watched their stories I got to know them, their hard work became household conversation at our dinner table, their trials and successes and interesting facts. When the kids came into the office they said “that is Tanya” or “that is …”. The funniest comment was my son – he said “Is that my grandma?”. He is nine so not the least bit confused but these folk kinda feel like friends and family.
I loved the inspiring individuality each brought to the project and I wanted to include all their stories but I couldn’t… I can’t wait to meet them at the World Parkinson’s Congress in Barcelona in JUNE 2022!
My favourite details and quotes(from menory) about the team:
John Blogger, Runner and very involved with TEAM Fox.
“Find what you enjoy…I do it for the medals!”
Miriam What a long list of sports she plays that I couldn’t include! Impressive! She is a World Parkinson Congress Ambassador
“Exercise is a great antidepressant”.
Kitty Comedian, Mother to 4 kids including twins and certainly full of personality.
“I hate exercising!”
Tanya ‘ She is a weight lifter, need I say more? She runs a podcast Parkinson’s Road and is now becoming a fitness instructor. I loved her honesty!
“I’d cry on my way to the gym”
Jon He has visited every Rock Steady boxing in the USA, he surfs, does hard obstacle races and he is an ambassador the World Parkinson’s Congress
”Some used walkers and they don’t need them after taking up boxing”
Emma Ninja warrior, She does karate and so much more. This lady can do cartwheels and handstands better than me and without training! She has 3 kids and was nice and honest too.
“I need it (exercise) in my day – If I don’t I get grumpy”
Eirwen She is already an avid campaigner in the PD Community and shared our video widely. I loved her input and feedback!
“I can play with the grandkids in the floor”
Jonny Doctor, artist, animator and finalist for WPC video competition. Check out his socer balls skills. Impressive!
”Set yourself a goal, if you fail just keep trying”
Alison Boxing cycling, you name it! Amazingly strong!
“It doesn’t matter what you do… just start doing something”
Google analytics tell me that New Zealand is our highest video viewer, thanks to Robyn and Emma and Kitty, despite it’s small size.
“It fixed my frozen shoulders”
Euan He sent me amazing footage of him doing amazing things – I wished I could have used it all!
“It is theraputic hitting things” (boxing bags not people I assume).
A.C. He is an outdoor kinda person, hiking, canoeing you name it. He is also a World Parkinson’s Congress (WPC) Ambassador and is our brave team leader of the ambassadors.
“See you in Barcelona!”
And finally me: Christine – My claim to fame in the Parkinson’s world is my video “Handstand for Parkinson’s, also a finalist at the WPC 2019 and I too am a WPC Ambassador. My focus is encouraging everyone to come to the Parkinson’s World Congress 2022. I am so pumped to meet my team and you can meet them too (of course I am assuming they are all coming!) I’ll quote AC says“See in Barcelona!”
So here is to the team and a sequel video in Barcelona at the World Parkinson’s Congress 2022.