My favourite Christmas tradition in Australia

The sea of candle lights rise and fall, again and again, like the waves on the ocean; occasionally punctuated by us singing Hallelujah,  Hallelujah with each lift of our candles. We don’t know the rest of the words, no one cares. Handel’s Messiah is only meant for the choir and to help us create the dance of lights! Our flickering candles show that community joined together can dance so much more beautifully together than alone. 

An integral part of Christmas celebrations in Australia is Carols by Candlelight, held outdoors, as Christmas is in the summer down-under. These are held by local councils, communities and churches in local parks and in the city it is a televised event. The show consists of a variety of singers,  celebrities and choirs singing old fashioned Christmas song with a visit from Santa and Celebrities like the Wiggles (dancing and singing quartet). For a person with Parkinson’s to consider going,  it’s quite the undertaking.

For the uninitiated – let me explain.  Firstly, for me, getting into town takes about 45 mins plus a 10 minute walk at each end. Thankfully most days I am up for this but if you are not, you need to have a disabled car parking official permit (each country has their owns systems). 

Next challenge is because it is a free event you have to sit in your reserved spot on the grass from 1 or 2pm onward, until 7pm when the show time starts. Everyone brings a blanket and picnic basket and you can buy goodie packs that include the candles, song books and snacks and the proceeds go to the Salvation Army charity for the homeless.

Still still is tough, thankfully you can dance to the pre show entertainment and we (friends/ family members) take turns going for walks, visiting the facilities which include disabled toilets preshow. Despite doing lots of pilates, a helping hand to get up and down from the ground is good and we use low beach chairs for back support.

It is a long day for someone with PD, so I am prepared and willing to take a little siesta in the park if needed – but s eriously it is buzzing with noise. We talk, we play games, we meet our picnic rug neighbours.  This is a tradition from my childhood and my our children love it too and are glad it hasn’t been  cancelled, but as luck would have it I got COVID and we couldn’t attend this year. The unexpected yet again.  

The songs bring us back to the meaning a Christmas:The story of an unexpected baby, without a hospital bed, with unexpected visitors, and an unexpected life and death. We all face an unexpected future but the joy of music and community again brings me joy. 

Research has shown that those who are more active in community do better with Parkinson’s so make sure you renew or find new new traditions to get involved in community this Christmas. I hope you can join your community for Christmas again this year in whatever shape or form that might be.  Remember the sea of candles dancing. Join in the dance of lights because in community joined together can dance so much more beautifully together than alone.

Christine Jeyachandran’s profile:

This is a summary of the work I do, with links to Videos, Public Speaking I have done and media articles that mention me.

Of course you can delve into my YouTube channel and find much more if you are inclined.

Christine Jeyachandran 
Ambassador of the World Parkinson Congress 2023 https://wpc2023.org/
Founder Alianza Iberoamericana de Parkinson https://alianzaparkinson.org/
Blog: https://handstandforparkinsons.com
Youtube: https://www.youtube.com/c/ChristineJeya
Twitter:  https://twitter.com/christinejeya
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.

Finalist for video Competition 5100+ views
She regained range of movement, balance, flexibility, coordination, and she’s stronger than ever. And her video Before and After shows a huge contrast in how it has changed the way she moves.
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.  Video thumbnail: What are the Benefits of Exercise? Parkinson’s secrets to living successfully. Video I of II
Christine herself had to “overcome apathy, doubts, fatigue, and fear” in training gymnastics so she wanted to help others understand the benefits went beyond her story and are worth the effort. This video comes with a sequel discussing “What keeps you motivated” as we know motivation is a big challenge for those with Parkinson’s too! This project was featured in Parkinson’s Life, online magazine.
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.   

Finalist in Focus on Ability Film Festival
Christine is now A Co-Principal Investigator, researching the needs of people with Parkinson’s in a Research Project funded by Fox Foundation Parkinson’s Disease in Latin America: Learning from Underrepresented Populations

Public Speaking
Workshop panellist / 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

Put it out there!

A few years back I wrote a post about TED talks but I shy-ed away from saying that one day I’d like to do one. So now I am saying it out loud. You won’t get get there without support from my community. I have just been nominated (online) by someone who heard my new wave talk. I know it will take time, more nominations and I need a lot more training to prepare.

The first step…well forget that – an important step is practicing and with 8 talks/ workshops, from July to November this year, I am certainly getting onto that. I’d reading another insightful book on Public speaking but I am now looking for RECOMMNEDATIONS FOR A SCHOLARHIP recommendations to do a course.

COULD YOU?

Anyone willing and able to recommend me for a TED talk and or a public speaking training scholarship feel free to write a letter and send it to me or do it on LinkedIn through recommendations. You might like to explain ‘Why would Christine’s STORY be a great TED /TEDx talk and the impact it could have or has had already. TED is about presenting Ideas worth sharing – and the story would be one CORE element of the talk. The ‘idea worth sharing’ is in development but happy to chat one on one with you about that.

It can be short.

My motivation is to create awareness about young onset Parkinson’s and especially the benefits of exercise. Thank-you in advance.

FROM TEDx Website Sydney

Opportunities and Biostatistics

In June I entered a program called New Wave at the University of New South Wales focused on entrepreneurship (for graduates and students). I learnt much and also had the opportunity to pitch the Alianza for funding. It was great opportunity to practice public speaking and although the video has not been made public, is the link, exclusively for my blog followers. I’d like to do a TED talk one day so I still have much to learn but practice is crucial step towards improvement.

4+ minute speech plus question time – (it goes on to other speeches)

I’m getting more opportunities to speak at different events and have 6 workshops/small talks booked over the next 3 months. I have been invited to give a workshop in the PDM Alliance conference in October in DC (USA) and I will also make a quick trip to Peru  at the same time.

But for now I have about 3 weeks left in biostatistics and a big assignment to conquer before I can say I finished my masters subjects and can focus on my research and preparing for my talks and trip. 

Quit Swimming

Yesterday I quit swimming. I have been doing classes since December and I got the backstroke and I have been improving my freestyle form. But the last few weeks I was getting more and more frustrated. I’m feeling I am putting too much pressure on myself and my skills are getting worse rather than better.

I knew how to ‘swim’ before the classes but they have been teaching me the right way to do it. I have progressed a lot but it turns out I am missing one item on the checklist to move to intermediate level – that is swim 25 metres. Why? I don’t get enough breath so I only get about half way along the 25 m pool before I have to stop. I know what I am doing wrong but trying and trying isn’t fixing it. It is just getting me upset. Sometimes little hacks help like “chin on your chest” but I still can’t do it all together yet.

I am going to swim on my own when the kids have lessons instead. Also I have decided to try just breathing on one side and see if that helps as I believe I could do that.

Quitting gives me time to do what I want to do. Today I joined a PD class and met some enthusiastic Parkies who I think would be great chaps to build a community with – It is terrible to be alone. I also need more time to do gymnastics and now I’m going to make this a bigger priority. I miss my gym in Peru but I’m sure with time I’ll figure out the plan and in the interim ‘Just keep moving!’

Have you ever had to quit something to get over a blockage or to find time for your true love?

Michael J Fox Research Project

This is a project announcement close to my own heart. See the link below.

Yes that is right it is about Parkinson’s Disease in South America, and specifically the Alianza Iberoamericana which I co-founded will be organising a stakeholder engagement. I will be a researcher on this project, which is is just in the planning staged right now. It is a huge undertaking and I am getting guidance from the proposal team and my university in Australia.

It has been a big team of people who put the application together and a big team of people who worked to get the Alianza Iberoamericana de Parkinson’s started.

I would love to take it further and have greater opportunities to help the Parkinson’s Community. Pray for a clear path. trustworthy partners and the right opportunities.

https://www.michaeljfox.org/grant/studying-epidemiology-parkinsons-disease-latin-america-learning-underrepresented-populations

Documentary

How do you get people’s attention and keep it?

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.

Thanks-you for reading my blog.

Enjoying God’s painting of the sky

Your film has 44 wonderful comments

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. 

Christine J.

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 CongratulationsSanta Monica United States
Very touchingSutherland Australia
super videowesley hills United States
Amor sensibilidad empatia y compromiso necesarios para afrontar esta condicion y hacer de esta vida un mejor mundoPereira Colombia
Tried to write something but have no words to describe mother .Liverpool Australia
This portrays humanity and love that is genuine.Bamenda Cameroon
Excellent work by Christine in raising awareness about this disease and the challenges the patient and their families face.Westleigh Australia
Christina honoured her mother by following and keeping one of the ten commandments.Kolkata India
Inspiring and Impactful Love is a verb.Sydney Australia
Well done ChristineCaterham 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 exampleDelhi India
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.Escobedo Mexico
Excellent story and awareness of this decease. Amazing family and the way they took care of their mother
Berwick Australia
JuampyJuampys
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 ChristinaPathanamthitta Kerala India
Very touching. Indeed true love can do anything.Thane-Mumbai India
Muy conmovedora historia y lo ms importante lucharon por su madre la f mueve montaas un ejemplo a seguir bendicionesTALARA Peru
Excellent very touchingChennai India
Truth well told…Bengaluru India
Thank you for helping raise awareness for this unrelenting disease. We all need to speak up to raise awareness so we can end PD nowCalifornia United States
PIURAPiura Peru
A heartwarming story will told. May the angels of God protect us all from evil.Oatley Australia
Inspirational story about a family willing to sacrifice their home to help their mother with Parkinson's.Penshurst Australia
Piura
Piura
An extremely moving film. What a wonderful sacrifice this family has made for their mother.Caterham United Kingdom
It is an amazing story well doneCarlingford Australia
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.Homebush Australia
Very natural without exaggeration down to earth informative filmBangalore 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.
Cromer Australia
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.2207 Australia
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.
Bangalore India
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.
Bangalore India
Truly touched.
Sydney Australia
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.Arequipa Peru
Inspirational.Concord Australia
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.Penshurst Australia
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
Piura Peru
Muy lindo y espero que esto llegue a muchas personas para que sepan su historia
Piura Peru