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.
It is amazing how one little thing can set you back Almost 6 weeks ago I broke my little toe. I was doing gymnastics (at home) and one of the children moved a chair just a millimeter to close and my left leg was kicking up and SNAP! It hit the edge of the chair.
Within minutes I realized that there was no way I could walk so got an X-ray at a local clinic as my foot turned blue. Thankfully I had visited a doctor a few weeks prior and he gave me a diagnosis by WhatApp but I visited him the next day to confirm it was indeed fractured. All he did was put a small tape of my foot and said it should be better in 3 weeks.
So I hobbled around but inactivity made my body stiff so I exercised as best I could. I started to get really frustrated because after 3 or 4 weeks. I was not better and it didn’t feel like it was improving. Exercise is a natural antidepressant and I wasn’t getting enough. I started to feel down.
Then things got worse. I was walking strangely to compensate for my foot and I somehow threw my shoulder. I could barely move my arm so I rang a friend who is a physiotherapist and she turned out to be great at find and found the pressure points to release the muscles. She gave me exercises so my shoulder could regain movement and she suggested I try to walk normally. The Parkinson’s body forgets very quickly what is normal so with thought and intention I started to walk better. This week I could even put on a pair of shoes and walked to the mall. It is still not 100% but it’s on the mend and I can do most things now.
The toe is such a small part of my body and it affected my whole body and outlook. It reminds me of this from the Bible about the tongue:
“The tongue is a small part of the body, but it makes great boasts. Consider what a great forest is set on fire by a small spark. The tongue also is a fire, a world of evil among the parts of the body. It corrupts the whole body, sets the whole course of one’s life on fire, and is itself set on fire by hell”. James 3:5-6
Whether you believe in hell or not we all know the power that hash words can have. My broken toe had a chain of effects that affected everything. The toe broke: which led to stiffness in my body which led to – frustration and sadness for the lost opportunities which led to – walking with poor form which led to – a hurt shoulder /arm which led to – more frustration and sadness BUT then I asked for help – which led me to fix my shoulder which led me to – try to walk normally Which led me to – exercise again Which let me to – get a buzz from exercise success again Which made me happy and ready to launch my comeback
Is a small thing In your life leading you into a downward spiral?.
Every situation is different and we sometimes can’t control the negative things that happen but we can learn from our own and other people’s experiences. . I’m not sure I would have done anything different or could have. Sometimes help from others doesn’t work but in this case it did and it’s always good to have in mind that there is a light at the end of the tunnel.
I hope this reflection helps you. It’s not all roses and rainbows as now I’m pushing myself physically and my muscles are sore but I’m on an upward upward trajectory.
PS. If you are curious about the connection between exercise and mental health there is plenty of information about there. Here is a link to one video:
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Usually activities shut down over Christmas/ new year but something in me said “Let’s start this group and keep the momentum going”. So we started in November and continued with meetings in December, January and February and March with Dr Karlos Lizarragas’s visit. It was a busy few months but it turned out to be a good decision because the week after the Doctors visit we all went into lockdown. I was grateful that I got to know the people who came and connect with them over the ‘summer break’. Now we can’t meet and it is day 108 of the lockdown and we’ve got at least a month to go and because many are elderly and at risk it will be some time before we can meet again.
This is a newspaper article that appeared in the CORREO newspaper the week Dr Karlo came. I have attached the link but have included a rough translation as the article in in Spanish. It might be old news but it reminds me to keep sending them messages of hope and encouragement by whatsapp or sms to my people here and since I didn’t translate this is earlier it is still new to most of you. Please note it is a loose translation and sounds a little strange but you can get the gist. 😉
This article is titled: “Those affected by Parkinson’s take on the challenge to to fight against Parkinson’s”
The Activate Association of Parkinson’s is growing and on Tuesday, March 3, they will receive the Arequipa neurologist Karlo Lizárraga Mendoza 03/01/2020 at 12:30
Last December, The Correo (newspaper) spread the encouraging message of Christine Jeyachandran, an evangelical Christian missionary, who manages well her symptoms in her body although it is affected by the disorder of the central nervous system. Three months later, her aim to create the Parkinson’s League – ‘Get Active'(Activate) is paying off with 26 people attended the last meeting. Christine, who has overcome the limitations of the disease through gym sessions, wishes her peers a similar experience. The first step, and perhaps the most difficult, has been to encourage this significant group of people of different ages to come along and not hide at homes. They are now the founding members of Actívate, and the next step will be to involve everyone in physical exercise as therapy.
Limitations. Parkinson is terrible: the physical limitations, the inability to speak loud and clear, tremors, dragging feet, drooling, diminished facial expression, the lack of balance, the frustration of not walking well, all this causes a heavy load of vulnerability that you carry to everywhere” says Christine to describe the diagnosis of parkinson’s. Activate began on November 3 with 5 members supported by two professionals from the Honorio Delgado Espinoza hospital, one of them is the psychologist Rita Ames who has strengthened Christine’s knowledge of group management and emotions of those affected by the disease.
Since then until February, they have met three times and each time the number of members has increased, reaching 26 people who have left isolation and are willing to continue on the path of integrating and growing the League, eager to achieve control of your movements. “Affected people do not have to be embarrassed in our meetings. You don’t have to explain your symptoms to anyone here because we understand each other. The reason for our name, Get active (Activate yourself), is that we want to do gymnastics, but we haven’t started for various reasons, but the first thing is that they came out of hiding, “says the promoter of the organization excitedly. In these sessions, with the help of the psychologist Rita Ames, everyone can share their ideas, some very shy and others less, they tell their stories, tears are not lacking because they finally have people by their side who understand them.
TO THE FAMILY. The meetings are focused on educating people and their families about the disease and about exercises that can help overcome their symptoms to improve their quality of life. Rita Ames indicates that many suffer from depression and apathy but they are explained how the Activate League will work, that is, with their participation. They find it hard to stop focusing on their weaknesses, but little by little they have shown hope in their eyes. One of the participants, Juan, acknowledged that at first he was only interested in reinforcing his depression due to the disease and its symptoms, but now he maintains the hope of engaging in physical exercises as a means of reducing them and thus improving his quality of life.
MUCH FAITH. “Telling PD patients they have a movement disorder and leaving it at that is a self-fulfilling prophecy. It would be better to tell them, “You have a disorder in which the motivation for movement is significantly impaired, along with movement . But by knowing that, and using conscious mental effort, you may be able to override the impairment to a significant degree” says Canadian psychiatrist Norman Doidge, and members of the Activate League have begun to believe it.
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.
“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 storyHandstand 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 aBefore 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:
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.
That may seem a strange question to use in a Parkinson’s association meeting. But that what I asked is very strategic. These people have parkinson! They have plenty of weaknesses. They are used to people asking them about symptoms and many suffer from depression, anxiety and lack of motivation. It is part of the disease though everyone is affected differently do not everyone has it.
The other reason I use such an approach is because I did a Masters in Community Development which is an aspect of social work and international development which approaches development from a different perspective. The role of the community development worker is to help the people themselves.
One of the key methods is asset-based development. Instead of going in and asking ‘what do you need’ or condescending statements or questions about their situation they look at the strengths they have. Helping people find their strengths means helping them see their worth and see how that could help each other. That is one of my aims with Activate – the Liga of Parkinson’s en Arequipa.
I also wanted to avoid the tearful diagnosis stories this meeting and keep it more positive. Not to say we won’t do these stories but not everytime we meet. Instead we started with singing, actions and dancing to a children’s song with a good latino rhythm. This helped everyone loosen up and have a bit of fun.
Feeling useful and valued brings people joy and my strategy is to get people involved in running the Liga. Let’s be honest it is a lot of work alone so having help will lighten the load too especially as the people get the hang of what is involved. Family of the people with
Parkinson’s are also invited to help out too.
We are hoping to start some sort of exercise classes for those interested so I asked if people could help find a location and teachers and or funding or the user pays. It could take some time.
We also had life size person outline on paper and we had everyone yell their symptoms, and we put up the labels on the body of where they related to. They enjoyed being the experts on the disease as we of people learn about symptoms others have.
We had about 16 people with Parkinson’s plus family. I have 42 contacts with Parkinson’s now and the Doctor just rang to say she has more people wanting to come so we a have penciled in the 11th of February for the next meeting in the same venue to keep things moving.
In all, exciting meeting and we hope and pray the enthusiasm continue.