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#parkinsonsdirectory

Not knowing what I was getting into in a good way!

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”
Robyn

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. 

Video Launch – “What are the Benefits of Exercise? Parkinson’s secrets for living successfully!

“The Amazing Benefits of Exercise in combating Parkinson’s Disease”. People with Parkinson’s from around the globe unite to share their stories. #parkinsonsawarenessmonth #empoweredbyexercise #Parkinsonssecrets #parkinsonsdisease

Thirteen people with Parkinson’s from all around the world have joined forces to create a video about the benefits of exercise. Each has been diagnosed with Parkinson’s disease, a neurological degenerative movement disorder that  affects one’s balance, ability to walk, coordination and range of movement. Each experiences Parkinson’s differently but one thing is quite common – People with Parkinson’s are often apathetic or struggling with motivation because of the shortage of dopamine.  Muscle stiffness can make movement difficult, but fighting this movement disorder requires movement.

These Parkie’s are all passionate about one message. They want to encourage others to exercise to combat Parkinson’s because they’ve benefited dramatically; physically and emotionally. Most have found a sport they love which keeps them motivated and a community that helps motivate them too.  This video comes with a sequel discussing “What keeps you motivated”. 

These empowered people implore you to: 

“Start exercising, any physical activity you enjoy doing. Then do it with determination and intensity”. 

Though the world has stopped for COVID19, Parkinson’s disease never takes a day off and neither should you. Waiting to begin an exercise regimen is not an option. This video inspires and gives hope in a time of crisis.

Australian Christine Jeyachandran initiated this video project because she wanted to encourage others positively and knows what it is like to struggle: 

“I had to overcome apathy, doubts, fatigue, and fear but the benefits have been worth the effort” says Christine. Christine was diagnosed at 37 year of age with Parkinson’s Disease. Her story Handstand for Parkinson’s was selected as a finalist at the World Parkinson’s Congress amateur video competition. She grew in confidence, set new goals and kept training. She made a Before and After video which systematically shows contrasting footage of her balance, coordination, flexibility and sheer strength and it has inspired the Parkinson’s community. 

The power of exercise and targeted physical activity to help people live well with neurological conditions cannot be overemphasized”  stated Professor Meg Morris Parkinson’s exercise expert researcher and Head of Allied Health and Professor of Clinical & Rehabilitation Practice at La Trobe University, Melbourne Australia. 

The Sequel to this video is “What keeps you motivated?” which is an equally necessary topic. Click this Link below:

FOR MORE INFORMATION: Christine Jeyachandran

Directory of Parkinson’s Organisations

I am so glad you are reaching out to find Parkinson’s exercise classes. It will be hard but as you’ve seen on the video, our team knows it is worth it.

It might be best you try your local Parkinson’s association and they can tell you what is running locally. This list is from the English speaking world of the video participants. We’re happy to add other groups little by little. Just comment on the post. 

Organisation NameWebsite Link
WORLD
World Parkinson Congress – #WPC2022 in Barcelona https://wpc2022.org/page/barcelona
World Parkinson Coalitionhttps://www.worldpdcoalition.org/
OCEANIA
Parkinson’s New Zealand https://www.parkinsons.org.nz/  
The Duncan Foundation (NZ)www.duncanfoundation.org 
Parkinson’s Australia https://www.parkinsons.org.au/
PDWarriorhttps://pdwarrior.com/
Dance for Parkinson’s – Aushttps://danceforparkinsonsaustralia.org/
UK
Parkinson’s UK  +44 808 800 0303https://www.parkinsons.org.uk/information-and-support/exercise
UK NHS – Exercise https://www.nhs.uk/live-well/exercise/free-fitness-ideas/
Dance for PD in Waleshttps://ndcwales.co.uk/dance-parkinsons
National Exercise referral scheme (Wales) https://www.wlga.wales/national-exercise-referral-scheme-ners
Cure Parkinson’s Trusthttps://www.cureparkinsons.org.uk/webinar-exercise
Wear Undefeatablehttps://weareundefeatable.co.uk/
Reach Your Peak www.reachyourpeakonline.com
Parkinsons Care and Support UK (PCSUK)http://parkinsonscare.org.uk
Organisation NameWebsite Link
CANADA
To find a list of resources available in your area visit Parkinson Canada www.parkinson.ca 
In British Columbia www.parkinson.bc.ca 
To find a Rock Steady Boxing class near you www.rocksteadyboxing.org
For online exercise classes & other great stuff visit U-Turn Parkinson’swww.uturnparkinsons.org
If you are newly diagnosed Davis Phinney Foundation can help https://www.davisphinneyfoundation.org/teams/doug-pickard/ and www.fluidfitstudio.com 
Organisation NameWebsite Link
USA
American Parkinson Disease Associationwww.apdaparkinson.org
Parkinson’s Foundationhttps://www.parkinson.org/
Davis Phinney Foundation (Boulder, Colorado, USA) https://www.davisphinneyfoundation.org/blog/how-to-encourage-people-with-parkinsons-to-exercise/https://www.davisphinneyfoundation.org/resources/parkinsons-exercise-essentials/
Parkinson Wellness Recoveryhttps://www.pwr4life.org/
Muhammad Ali Parkinson’s Centerhttps://www.barrowneuro.org/get-to-know-barrow/centers-programs/muhammad-ali-parkinson-center/
Invigorate Physical Therapy & Wellnesshttps://www.invigoratept.com/
Dance for Parkinson’shttps://danceforparkinsons.org/
Rock Steady Boxinghttps://www.rocksteadyboxing.org/
Michael J. Fox Foundationhttps://www.michaeljfox.org/
StoPD  https://stop-pd.org/
ParkinsonsDisease.nethttps://parkinsonsdisease.net/
Parkinson’s Resource Centerhttps://www.parkinsonsresource.org/
LSVT LOUDhttps://www.lsvtglobal.com/LSVTBig
Blogs/ Podcast /Other
Christinehttps://handstandforparkinsons.com/
Eirwenhttps://peptalking.home.blog/2020/02/12/patiently-exercising/
TanyaParkinson’s Road Podcast
https://www.buzzsprout.com/686759
Johnpdfitonline.org
Kittywww.kittyfitton.com