I’m working on a documentary about Parkinson’s Disease with a professional filmmaker. Right now I am working on the opening script… a daunting task as it has to capture people’s attention and draw them in.
I need a script writer really, someone with an independent eye as I am too involved in the film to have perspective on it. I look forward to sharing with your the video next year and I am looking for marketing support as well to get it into the public spotlight and hopefully get some mainstream media attention when it is ready to release.
I have been extremally busy over the last 3 months and have not had time to post much but we all have these times in life and I look forward to returning to writing soon but need a few more months to get settled and catch up on a few projects, plus work and family responsibilities.
My Film” Would you sell your house to save your mother” was recently in a video competition called “focus on ability”. Unfortunately the website could only hold 10 comments at a time so I couldn’t see all the comments and I asked Ryan from Focus on Ability if there was a way I could see them all. He wrote “Your film has 44 wonderful comments”. I was shocked, that it had so many and most were from people I didn’t even know.
Thank-you everyone for voting and for sharing and for the amazing comments on the video. I do not believe it won the popular vote but you never know and on the 27th October about 7pm Australian time it will be announced in a ceremony on facebook of “Focus on Ability”. It is up for a judges award as an International Documentary.
Win or loose it has been a valuable experience for me in editing the video and managing the whole process of the competition. The video has been seen by over a 1000 people more than saw it previously and many have been challenged, realised how blessed they are and learnt something about Parkinson’s they didn’t know. I have also connected with many people who helped me share it yet again.
It also encouraged me to start another video project but this time with a young professional. I don’t want to give too much away but I think it is going to to be a powerful short documentary and our aim is to get it into a mainstream film festival.
Of course I’m now learning you need funding to promote your film and bring it to the attention of the public but since we’ve stepped out in faith and filmed the project we’re going to keep going and have faith that the funding to promote it will come in once we have the final product, it should sell itself.
I don’t want to give too much away just yet but watch this space.
Thanks again for your support and interest.
44 Comments from around the World
Beautiful and heart touching video. Creates a lot of awareness on the disease.. God bless the family.
Marsden Park Australia
What an inspiring and educational short film Congratulations
Santa Monica United States
wesley hills United States
Amor sensibilidad empatia y compromiso necesarios para afrontar esta condicion y hacer de esta vida un mejor mundo
Tried to write something but have no words to describe mother .
This portrays humanity and love that is genuine.
Excellent work by Christine in raising awareness about this disease and the challenges the patient and their families face.
Christina honoured her mother by following and keeping one of the ten commandments.
Inspiring and Impactful Love is a verb.
Well done Christine
Caterham United Kingdom
Excellent work of her daughter. She shows compassion and love for her mother. Credit goes to the mother herself while rearing her. She has learnt from her mother herself. It's a rare example
Es una gran realidad no hay cura para el Parkinson yo tambin lo sufro pero el amor todo lo puede est gran familia merece ganar con ste vdeo.Voten e inviten a ms personas que lo vean y voten por el. El parkinson no nos definesin embargo es una enfermedad muy difcil de sobrellevar tanto el paciente como la familia se van consumiendo con la enfermedad.
Excellent story and awareness of this decease. Amazing family and the way they took care of their mother
Christina did a wonderful thing I wish she become a roll model for many. Many do not care for their aged parents even though they have plenty of wealth. May the Lord bless Christina
Pathanamthitta Kerala India
Very touching. Indeed true love can do anything.
Muy conmovedora historia y lo ms importante lucharon por su madre la f mueve montaas un ejemplo a seguir bendiciones
Excellent very touching
Truth well told…
Thank you for helping raise awareness for this unrelenting disease. We all need to speak up to raise awareness so we can end PD now
California United States
A heartwarming story will told. May the angels of God protect us all from evil.
Inspirational story about a family willing to sacrifice their home to help their mother with Parkinson's.
An extremely moving film. What a wonderful sacrifice this family has made for their mother.
Caterham United Kingdom
It is an amazing story well done
Amazing story Thank you for sharing and creating the video to raise awareness on debilitating Parkinsons disease and its impact on function family and finance. Thank you Pray that there will be a breakthrough in finding cure for this disease.
Very natural without exaggeration down to earth informative film
Bangalore KarnatakaIndia Australia
Very moving Hope we find a cure for Parkinson soon. Instead of spending trillions of dollars on war machinery we should work on finding cure for Parkinson AIDS Cancer etc.
Warminster United States
Rosita is not like many people of this world but allowing God to change the way she thinks. She knows how to do everything that is good and pleasing to God.Romans 122 CEV. In serving her mother's needs she realizes the value of mothers. Parkinson's is debilitating and without medical intervention life is severely restricted and causes an intense emotional with a mental impact that isolates the person. Thanks for highlighting the need in some little published countries.
A true story of love compassion and sacrifice an example to emulate of Honouring your father and mother a story that will inspire many to pray for and support those suffering from Parkinsons disease.
Caterham United Kingdom
Very enlightening thank you.
Well done a brave step to save the mother and I support this because as scriptures says nothing is greater then LOVE… It is God's love that saved us from the bondage of sins and saitan…All Praise and Glory to God for giving some comfort for this sister…
Little Andaman India
The world needs to see this powerful story. Wish this film will get recognized and that many more will benefit from this very open and honest effort.
A close knit family's to put the Mother above all their personal need which is selling their prized possession 'The House' is very touching and moving. Very appealing film.
Thankyou everyone for your votes. I know I have to a wonderful community supporting me. My friends like Ana Mara Sabela Lizzie Esme Larry. David and my kids too have put in hours of help checking and rechecking. It takes a community to make a documentary. And thanks to the family for inspiring so many. I have a longer version of their story at Christine Jeya on YouTube. We hope this video shows the need for a cure and better treatment for all.
Wonderful Christine So good
Caterham United Kingdom
A video which depicts reality of life.It was a very moving video about the effect of the disease. More so about the sacrifice of the family to give the life back to the mother who gave them life in the first place and made so many sacrifices to bring them up.The video is about celebration of life rather than gloomy helpless one It is about victory over one of the most debilitating diseases in life.
Well done. If the problem can be solved by money its not a problem its the costs. – Jewish proverb. I would do the same.
Old lyme United States
Ta Doris t vas a ganar
Muy lindo y espero que esto llegue a muchas personas para que sepan su historia
UNTIL: August 16 midnight Sydney, Australia time (10am Tuesday 16th AUGUST New York Time)
Find my name: Christine Jeyachandran and Video – Would you sell your house to save your mother?
Under your film will be a vote now button. Click on the button and enter their details.
All votes must be verified to count. That means everyone who votes will be sent an email with a verification link, they then simply verify via that link. This means people cannot cheat and put in fake email addresses. We also have a manual verification system, so if your voters aren’t receiving the verification email don’t stress (spam folders etc) their vote will still count, we can identify the real email addresses. To incentivise voting, we are giving away $50iTunes vouchers to random voters.
Vote and ask others to vote too for the video.
Many years the difference between winning and 2nd has been under 5 votes so every vote certainly counts.
People can only vote once.
Por favor, vote por mi vídeo internacional en el Festival de Cine Focus on Ability. Se podrá ver y votar a través de www.focusonability.com.au
Cuando Abre: el martes a las 10 de la mañana, hora de Sydney, Australia (7pm el lunes 9 Agosto en ahora Peru)
Teminara: 16 de agosto a medianoche, hora de Sydney, Australia (9am, martes 16 Agosto en Peru).
Muchos años la diferencia entre el ganador y el segundo lugar ha sido de menos de 5 votos, así que cada voto ciertamente cuenta.
Sólo se puede votar una vez. Creo todo sera en Ingles por eso vez mi nombre y video – el video es en espanol con subtitulos en Ingles.
Busca mi nombre: Christine Jeyachandran y “Would you sell your house to save your mother”
Debajo de su película habrá un botón para votar ahora.
Haga clic en el botón e introduzca sus datos. Todos los votos deben ser verificados para que cuenten. Eso significa que todos los que voten recibirán un correo electrónico con un enlace de verificación, y entonces sólo tendrán que verificarlo a través de ese enlace. Esto significa que la gente no puede hacer trampas y poner direcciones de correo electrónico falsas. También tenemos un sistema de verificación manual, así que si tus votantes no reciben el correo electrónico de verificación no te preocupes (carpetas de spam, etc.) su voto seguirá contando, podemos identificar las direcciones de correo electrónico reales. Para incentivar el voto, regalamos vales de 50 dólares de iTunes a votantes aleatorios.
Vota y haz que todos tus conocidos voten por el vídeo.
“I have cancelled our friends coming for dinner” I said. “No mummy! she implored me to “UNCANCEL” as only a 13 year old can. But within a few hours we were both snoozing in our beds, me with belly pains and body aches and she with the tiredness of a 2 year old. That is not normal for my Annabelle.
It was the right choice as it turned out. It was COVID.
My Monday Annabelle and I tested positive to COVID and over the next 10 days I had flu symptoms, slight fever, headaches, both intense and normal, tiredness, sleeplessness and other days of excessive sleep. The other two kids had brief symptoms but we never got them tested and the kids were back to normal within a day or two.
By my 5th day, David had joined me in the covid sleepiness.
It is day 11 and though I’m not 100% yet I feel like it is time to seize the day and pray this is the turning point. David seems to be more awake today too and though blowing his nose loudly – he seems on the mend too.
We’ve had friends delivering food – we still have left overs and so many messages of love and support. We’ve been so blessed to experience a light version of COVID – well that is my guess – no hospitalisation, no oxygen needed.
Please pray I recover quickly so I can get back to my exercise and vibrant self. I know we need to be patient.
Alianza Iberoamericana de Parkinson is an exciting initiative that needs support! I’m looking to generate revenue to get this life-impacting initiative off the ground. My project has been short-listed in RISE21 a competition for social enterprises that help reach the UN development goals.
Without timely treatment, Parkinson’s Disease disables many. The Alliance of Parkinson’s aims to increase the quantity, quality and accessibility of resources and training available to health professionals and patients and their families, to improve services and the quality of lives of people with Parkinson’s throughout the Spanish speaking world. See this video for more information. Please contact me by comments if you’d like to know more or can help fund or find funding for this Project:
3 April 2021: This 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. She trembled violently. 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 Dorys.
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, amatuer 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.
Please don’t let Dorys 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!
Christine Jeyachandran – Parkinson’s World Congress Ambassador 2022 & Founder of Activate Liga Contra el Parkinson (Peru)
Parkinson’s Disease is severely disabling in parts of the Spanish speaking world because of late diagnosis and poor treatment. Parkinson’s robs one ability to walk, talk, eat and smile. Some of this suffering is preventable.
Parkinson’s Disease is a growing pandemic with 7-10 million worldwide and it’s prevalence has doubled in the last 25 years and will double again in the next 20 years if we don’t find a fight for change. 2% of people over 60 years of age but in Australia 20% of those diagnosed are under 50. Statistics don’t exist in many Spanish speaking countries. The whole family is affected economically and emotionally.
In the west treatment exists. Parkinson’s disease can still be disabling and painful but in Spanish speaking countries treatment can be substantially lower (each country varies). I’m a founder of an iniative called Alianza IberoAmerican de Parkinson. This initiative is needed because:
Patient’s lack self management and lifestyle and trustworthy disease education would help address – false information (cure scams), social stigmas, dangers of isolation and inactivity and depression that lead to rapid disease advancement.
Many countries don’t have exercise and multidisciplinary programs that help prevent progression and advocacy and awareness raising is needed for this
and more health professionals need training in Parkinson’s disease.
The idea is to provide accessibility to Parkinson’s resources to patients, families, health professionals and associations. In turn we can unite for training opportunities across Iberoamerica (The Americas and other Spanish speaking locations). This will strengthen capacities to prevent disease progression, raise consciousness and educate professionals better in Parkinsons in Spanish and ultimately create advocacy for health service improvement including exercise and other key multidisciplinary programs.
Such an alliance of support has never been done in Spanish. Everyone has been working in silos often reinventing the wheel. With COVID forcing leaders like cofounder Sonia Elizabeth and I online as we cannot hold in-person meetings. The demographic is older and some have struggle to adapt to zoom meetings but our community leaders, health professionals and associations are now online, zooming and doing webinars and we realised that we are closer than we thought and can work together.
Our approach is unique as we’re not rushing to create new resources, we’re bringing together what already exists with the help of the World Parkinson’s Congress, who is collating resources in English. Our work will be to have such a directory in Spanish. International health associations exist for professionals but patient friendly resources will be prioritised.
The Project has grabbed the attention of the target population in the Parkinson’s community. Three big associations are eager for us to share their Spanish resources. Over 10 countries are represented so far including associations, advocates and professionals. We surveyed their thoughts concerning the needs of their group and their commitment to help and resources they have. This has determined our aims.
We are doing education webinars in partnership with others and next is with the Mohammad Ali Parkinson’s Foundation and the Federacion Espanola of Parkinson. The comments we are receiving show the difference we’re making in our target population and the ageement they have to see this succeed.
“Scaling up means expanding, adapting and sustaining successful policies, programs, and projects in different places over time to reach a greater number of people”(Hartmann and Linn, 2008). This exactly the aim of this initiative – Our goal is to increase the quantity, quality and accessibility of resources available concerning Parkinson’s disease in Spanish to improve the quality of lives of people with Parkinsons throughout the Spanish speaking community.
Our strategies for Scaling Social impact include expanding our network of affiliated organisations connected by the shared goals and activities to disseminate a directory of resources, promote courses for professionals, and raise awareness together (online, printable, videos and webinars),
Our business plan focuses on these aims and encourages advocacy for better services and policies concerning Parkinson’s treatment. Ultimately we’d like to evaluate lessons learnt in policy and service initiatives and advocacy to create context specific reviews that could guide further efforts.
Future investment would help:
Currently we have no funding for awareness campaigns, paid staff or a web platform. We have volunteers and willpower. Future investment could create a technological platform, help cover costs of awareness raising and ultimately we’d like to provide leadership training across our partners organisation to build up effective and discerning leaders who can disseminate resources and lead awareness raising campaigns in a latino context.
This is a guest blog I made on a Spanish website – I translated it into English here:
I am Christine Jeyachandran and I was diagnosed with Parkinson’s disease seven years ago, when I was 37 years old. People are surprised that I have Parkinson’s because of my age and also because I am open about it. It was difficult at the beginning . In 2018 I wrote: “Sometimes I feel sad. This disease got me too young, I am only 41 years old. I grieve the loss of what I can’t do. I hope I can be there for my children when I am older and be full of energy and strength.”
But in my journey I have shown that I should not wait for the bad things to happen, but to change my destiny with determination. For me, light exercise was not working. My Parkinson’s symptoms were getting worse, my left hand was shaking and my ability to walk and my arms were affected. Light exercise was not helping me prevent my body from deteriorating further. In 2018 I decided to take classes, 3 times a week of artistic gymnastics, starting 1 hour per week of class and going up to 2 hours.
It was very hard because I couldn’t move much, I was sweating and sweating, my muscles hurt and I was afraid to do some exercises…. But I filmed my experience and my story. My video Handstand for Parkinson’s was a finalist in the World Parkinson’s Congress video competition. I regained my range of motion, balance, flexibility, coordination and I was stronger than ever. It is amazing for me to see the change in my Before and After exercise video.
Now I am an ambassador for the World Parkinson Congress 2022 (WPC), I want to encourage you to go (Barcelona). It is for professionals and people with Parkinson’s and their caregivers. WPC changed my life, because I was able to learn a lot about Parkinson’s and I came back ready to help my community in Peru. I am Australian but I have lived in Peru with my family for 10 years now. I am now passionately helping to educate people with Parkinson’s and encouraging them to do exercises to treat Parkinson’s. I want to finish with a reflection on the attitude of people with Parkinson’s.
I want to end with a reflection on the Parkinson’s attitude I see around me. People with Parkinson’s usually don’t like to go out in the street because there is prejudice against people with disabilities. People hide their disability. Sometimes others want to blame and say it is a curse from God.
If they go to church, sometimes they are told to pray and to have more faith in God for healing. If there is no healing, they don’t want to go to church anymore. On once or twice it was said to me: “You need to pray and have faith”. I agree I need to pray more and have more faith but I want to say it’s nobody’s fault that I (or you) have Parkinson’s.
There are many people in the Bible like Paul, who had great faith and God did not heal him and there are people who suffered: Daniel, Joseph, Naomi, Hannah and Job. I will be the first to admit that I fail more often than I would like to openly admit, but I believe that God is gracious and loving. He sees our hearts. If Jesus died on the cross for my sin, I don’t believe he would punish me (with a disease) unless it is a direct consequence of bad choices, i.e. smoking can cause lung cancer.
In the Bible there is a story about a blind man (John 9: 1-12) and Jesus’ disciples asked, “Rabbi, who sinned, this man or his parents, that he was born blind?” “Neither this man nor his parents sinned,” Jesus said, “but this happened so that the works of God might be shown in him. As long as it is day, we must do the works of him who sent me.”
Jesus healed the blind man and showed his power. I don’t know why I have Parkinson’s, but I have had the opportunity to meet many with Parkinson’s and connect with them. I can encourage and educate them and that gives me joy and purpose and I can love them in a world where they feel rejected at times. The disease is not good but I know for sure it is not a curse from God because of past actions.
I cannot hide my disability and any question or comment helps educate one more person, one person at a time. I can’t sit at home and hide, I have responsibilities and children, and there are beautiful places to see and mountains to get to the top off. I can’t stop living and enjoying life, even if I am scared sometimes.
I have learned that ‘Courage is not the absence of fear, but the ability to go on in spite of fear’.
Ambassador of the World Parkinson Congress 2022
Blog: English and Spanish https://handstandforparkinsons.com
I was on vacation, relaxing when I met a friendly guy in the same hotel, let’s call him Kevin. He is traveling alone, in his 50’s and my 6th sense told me there was a reason why I should chat with him. But he worked in real estate, no connection there!
But when I told him about my PD association he was full of advice as he had worked in pharmaceuticals previously. He said I should get a social media plan for my organisation. Of course I know that social media is important to get the message out so I nodded politely when he kept pushing this point.
But the next day he went from a different angle, the more members you have the more you can influence. I have about 100 members and maybe contact with 200 nationwide.. not enough to get this on the national agenda, not even enough for the pharmaceutical companies to take me seriously he says. He said if you can get 5000 people then you have power.
The penny dropped.
So we need to use paid advertising in social media to get it beyond PD circles. It turns out Kevin had a deceased parent with Parkinson’s and it was clear he’d never heard of such support groups. Point made.
Activate (my NGO) needs to have a presence that cannot be ignored, so that Parkinson’s treatment and education are actually on the agenda. And so that pharmaceutical companies will come to the party with conference funding, educational resources and doctors etc. Let’s be honest – we’ll always need them, but they need us too and if we group together, just maybe we can influence them for the better.
I asked Kevin to help me draft a letter to send to the pharmaceutical companies which he kindly did but now I’ve got to step back and set up my systems to meet the swell of responses that will come in from my media campaign (create that too) and automated response forms and information sheets etc. Yes, this could take months but April is Parkinson’s awareness month so that could give me a good target.
It is funny how even on vacation the coincidental meetings with people can influence work.