An interview with Christine Jeya from Handstand for Parkinson’s on July 14, 2023 by George Ackerman, Ph.D, J.D.
Biography
Christine Jeyachandran: 9 years ago, at age 37, Christine was diagnosed with Parkinson’s disease in Peru where she lived until recently. It started with a slight tremble, weak fingers and led to left foot dragging and difficulty walking without medication. Gymnastics has changed her life completely and empowered her physically and mentally. Her video Handstand for Parkinson’s was a finalist at the World Parkinson Congress.
Christine is a passionate health advocate, driven to improve the lives of people with Parkinson’s through prevention. Christine’s personal story has impressed doctors and physiotherapists around the world as she used exercise to regain her movement for early onset Parkinson’s disease. Her story was shortlisted in World Parkinson’s Congress video competition (Handstand for Parkinson’s). Christine was living in Peru (10 years) and noted to lack of services and even knowledge about the benefits of exercise so she started to education her community and started a local association and launched an International Alliance of Parkinson’s for Spanish Speaking countries to see how they could work together and look for resources. She is the co-principal investigator for a project concerning Parkinson’s epidemiology in Latin America. She uses lived experience to educate and is now breaking stigma and telling other people’s Parkinson’s stories. Christine is almost fluent in Spanish.
Public Speaker and Advocate and World Parkinson Congress Ambassador WPC2022/3
Masters, Public Health, University of New South Wales (2020- 2022).
Masters, International and Community Development Deakin University (2004)
Graduate Diploma in Divinity (2008), Australian College of Theology/ Morling College (2008
Economics (Social Science) Degree, Honors in Government, University of Sydney (2000)
Please tell me a little about your background.
I’m Christine. I’m Australian but I live in Peru with my family. I was diagnosed with Parkinson’s Disease four years ago when I was 37 – it was a bit of a shock! My left hand shakes so people think I’m nervous. Parkinson’s has damaged my ability to walk and my foot drags. My left arm/ hand also doesn’t move as it should, and it trembles. I need to do exercise regularly, which is time consuming, to keep my body from degenerating.
Sometimes I feel sad. This disease has got me too young – I’m only 41. I feel a sense of loss of what I can’t do. I hope I can be there for my children when I’m older and be full of energy and strength.
Sometimes I’m tempted to question why I have Parkinson’s but, in the end, it doesn’t really matter why but I do know that God has a purpose for me in this. I know that I can be an encouragement to others. I have shared my story with many and serve God despite the hardships of life.
On that note, I am a bible believing Christian. Obviously, I understand not everyone has the same beliefs as me but I cannot express myself most honestly without occasional reference to this. So I hope you keep reading nonetheless knowing that no offence is intended if you disagree. It is just “my story”.
PS- I write in Spanish too, whenever I can, because I live in Peru and I feel there are few resources here in Spanish about Parkinson’s disease. I hope to advance people’s understanding of the disease where I live.
¿Quien soy yo?
Hola, soy Christine. Soy australiana pero vivo en Perú con mi familia. Hace cuatro años me diagnosticaron la enfermedad de Parkinson cuando tenía 37 años. ¡Fue un shock!. Actualmente mi mano izquierda tiembla y la gente piensa que estoy nerviosa. El Parkinson ha dañado mi capacidad para caminar y arrastro un pie. Mi brazo y mano izquierda tampoco se mueven como debería. Necesito hacer ejercicio frecuentemente, lo cual lleva mucho tiempo, para evitar que mi cuerpo se deteriore más.
A veces me siento triste. Esta enfermedad me dio demasiado joven, sólo tengo 41 años. Siento la pérdida de lo que no puedo hacer. Espero que pueda estar allí para mis hijos cuando sea mayor y estar llena de energía y fuerza.
A veces me siento tentada a preguntar por qué tengo Parkinson, pero al final no importa el por qué, pero sí sé que Dios tiene un propósito para mí en esto. Sé que puedo animar a otros. He compartido mi historia con muchos y sirvo a Dios a pesar de las dificultades de la vida.
En ese sentido, soy un cristiano que cree en la Biblia. Obviamente, entiendo que no todos tienen las mismas creencias que yo, pero no puedo expresarme con la mayor honestidad sin mencionar mi fe. Así que espero que aun asi sigas leyendo, sabiendo que no se pretende ofender si no estás de acuerdo. Es solo “mi historia”.
Nota: Escribo en español, siempre que puedo, porque vivo en Perú y creo que hay pocos recursos aquí en español sobre la enfermedad de Parkinson. Espero que la gente entienda mejor la enfermedad.
Christine regained her range of movement, balance, flexibility, coordination, and she is stronger than ever due to exercise.
Christine also creates advocates video such as ‘Ray of Hope’ which won the popular prize at the World Parkinson’s Congress.
Can you tell me more about your organization?
In April 2020, Christine edited a video: What are the benefits of exercise?. This shows the amazing stories of 13 people with Parkinson’s from around the World who swear by and implore people with Parkinson’s to exercise with determination and intensity, an apt message during COVID19. Parkinson’s disease never takes a day off.
https://www.youtube.com/watch?v=Nx-N69SzXbg&feature=youtu.be
What is your passion and how did you get involved in Parkinson’s awareness and hope for a cure?
My motivation is to create awareness about young onset Parkinson’s and especially the benefits of exercise.
Christine is a co-principal investigator research the needs of people with Parkinson’s funded by the Fox Foundation. For more see https://www.michaeljfox.org/grant/studying-epidemiology-parkinsons-disease-latin-america-learning-underrepresented-populations
See the story of “What keeps you motivated? Parkinson’s secrets to living successfully” Video
It is difficult to get motivated to exercise intensely, especially if you have Parkinson’s disease but these 13 people with Parkinson’s from all around the world have joined forces to create a video about the benefits of exercise and what motivates them to exercise, the benefits is a huge part of it. Each of us have 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. 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 years 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.
What effect can movement have on an individual with Parkinson’s?
The video – Would you sell your house to save your mother? Has been had amazing feedback (see poster below) and exposure and was a top 5 in a popular vote for the Focus on Ability Video Competition last year. It has over 44 amazing comments just on their site and many more through social media. It challenges the world to see the needs within the Parkinson’s Latino community.
Dorys’ family decided to sell the house they live in, to operate on their mother. What would cause a family to take such a drastic measure? Parkinson’s Disease! After 10 years of Parkinson’s Disease Dorys could not control her body. Her body shocked uncontrollably! Without graphic footage this story brings the reality and ugliness of Parkinson’s Disease and its effect on one family. It is an amazing story of suffering, sacrifice, and love. The month of April is Parkinson’s disease awareness month. Parkinson’s Disease is a chronic progressive neurodegenerative movement disorder and is one of the Neurological disorders which are the leading causes of disability globally (GBD Parkinson’s Collaborators 2016), Parkinson’s disease, discovered more than 200 years ago, is the fastest growing neurological disease in the world. There is still no cure. We urgently need a cure for this disease and better treatment for people like Dory’s. This story aims to demonstrate the reality of the disease for people who live in lower- and middle-income countries and the west too in some cases. The story is from Peru and is made by Christine Jeyachandran, amateur youtuber. Christine, an Australian, was diagnosed with young onset Parkinson’s disease diagnosis at the age of 37 and lives in Peru. The deficit of services for Peruvians breaks her heart. She writes “Well, within minutes I was blown away by the family’s story. Despite not having my camera with me, I returned early from the beach to film the full story” Christine started an association to help educate her community about Parkinson’s disease, but she has contact with people all around Peru with the disease. The video is also available on YouTube fully in Spanish. Please don’t let Dory’s story be invisible. Her life and the life of her family matter and we need to let others know just how this. We need to END PARKINSON’S!
https://www.youtube.com/watch?v=5vAlkXmsSSk
What events do you participate in?
World Parkinson’s Congress, Public Speaker.
Public Speaking
Workshop panelist / Interview Mainstage, Reachout, EU, Sydney University
Panellist, NSW Parkinson’s Workshop
Pitch finalist at University of New South Wales, NEW WAVE
Speaker, Diva’s Luncheon – Online
Panelist at events Muhammad Ali Parkinson Center and Spanish Federación de Parkinson
Interview, Two Mikes Podcast, Christine Jeyachandran: Making a difference in South America
Panelist on webinars, Paso a Paso Muhammad Ali Parkinson Center (3 occasion)
Panellist Sustain our abilities Webinar
TV Interview TV Peru Sin Barreras
Interview, When Life Gives you Parkinson’s Podcast: Even Patients can Push things along
Panellist and organiser, LSVT introduction to LSVT webinar in Spanish
Speaker Insight into Parkinson’s Parkinson’s Conference online
Interview Parkinson’s Road Podcast
In the Media
PMD Alliance Blog Newsletter, Christine’s Story – Parkinson’s is not a punishment from God
Parkinson’s Life Magazine Article – Three inspiring film makers
Parkinson’s News Today Peruvian Family Sell Their Home to Afford Mother’s DBS
Parkinson’s Life Magazine New Years Resolutions Parkinson’s Community
Parkinson’s Life magazine Benefits of Exercise Parkinson’s Video Project
Diario Correo Afectados por enfermedad
Encuentro La Gimnasia artística como terapia,
Diario Correo Como Superar
European Parkinson’s Disease Association YOPD Christine Jeyachandran
How can someone get in touch? What is your website?
https://handstandforparkinsons.com/
If you had one final statement or quote you could leave for the Parkinson’s community, what would it be?
I am turning the downside up, bringing the unseen into the light, to advocate for better care for people with Parkinson’s.
DRAFT PRESS RELEASE: Young Aussie advocates video, ‘Ray of Hope’ wins the popular prize at the World Parkinson’s Congress
15th July 2023
Sydneysider Christine Jeyachandran’s video ‘Ray of Hope’ won the people’s choice video competition at the World Parkinson’s Congress in Barcelona. Christine, also an speaker and ambassador for the event was thrilled to hear the news and have it featured in the opening ceremony in front of thousands people at the World Parkinson’s Congress in Barcelona, Spain.
Christine, herself a person with Young onset Parkinson’s from the age of 37 directed and edited the video herself and says her journey to this win actually started back in
The first World Parkinson’s Congress she attended in 2019 in Japan, where Christine Jeyachandran’s video Handstand for Parkinson’s was a finalist video competition. Christine didn’t win in 2019 but was so inspired by the Congress she started a support group on her community in the south of Peru, where she was living at the time, after arriving back from the Congress and was chosen as an ambassador for the WPC, an International Association, uniting stakeholders for research and to improve the care for people with Parkinson’s.
Her Video ‘Ray of hope’ is about Ray and his wife Ana María who live in Lima Peru. They had found Christine’s WPC video online and made contact and they kept in touch.
Christine decided to make a documentary to raise awareness about Parkinson and interviews 5 people including Ray and she was struck by Ray’s eloquence and decided to make ‘Ray of Hope’ as a short film for the Congress video competition for 2023.
She wanted to get Ray and Ana María to the Congress to get further resourced to help the people in Peru with Parkinson so if by chance it won, the prize would help Ray get to the conference.
The video has views from Peru, Australia, Ireland, from Latin America and throughout the world. They want to thank everyone who voted and helped them win the people’s choice video competition award.
Ana María says “We would not have been able to come except for the support of the WPC and the voting public.
Ray and Ana Maria are involved in a support groups a Lima support group for people with Parkinson’s. Many with Parkinson’s face physical challenges as well as depression and isolation which compounds their decline.
Christine says “Ray was overjoyed with the win. He travelled to Spain to receive it and his sibling came from Ireland to see him there”.
The video is educating about the condition of Parkinson’s and encouraging others, that they’re not alone”.
Christine worked in Peru for over 10 years before moving back to Australia in November 2021. She hopes Ray and Ana-Maria’s experience at the congress will help the community in Peru and help them raise awareness about the disease and help them push for better treatment and care for people with Parkinson’s Disease. Ray and Ana Maria are a resource for the Parkinson’s community in Peru.
She says “My world was turned upside down by a word we barely understood at the time. But 4 years declining, I started doing handstands for Parkinson’s. This improved my health, and the WPC inspired me to keep making videos and become a Parkinson’s advocate. Now I’m doing research into the unknown needs of PWP in Latin America.