Christine

VOTE FOR RAY OF HOPE

My video RAY OF HOPE has been short-listed to the World Parkinson Congress VIDEO competition 2023,  so I need 4 minutes of your time. I entered the video under the name of the protagonist. RAY FEENEY, not Christine Jeyachandran.

To win the popular vote, Ray and I need your vote. 

You can only vote once and for this reason they take your name and email but they don’t put you on a mailing list. It is to discourage dishonesty. Please vote only once and kindly recruit your family and friends to vote too.

Step 1.  Go to this page to watch the top 12, or Just Ray of Hope https://wpc2023.org/page/Top12-WPC2023

Step 2. You can skip the videos and just vote

https://web.cvent.com/survey/c8190b9c-c629-439a-afff-e516c2ba3cab/welcome

The button START appears – Press it then vote for RAY OF HOPE – RAY FEENEY

(As per the images)

 

Thank-you for your vote and support. You can also note my other video got an honorary mention. It is called: INVIGORATE

 

 

Love, self discipline and power: Happy International Women’s Day ladies.

I started school with my mother as my teacher. I was quick to disappear from the classroom across to the other side of the village when someone knocked on the door. My Mum was the local nurse who happened to pull out teeth and deliver babies too as she was a trained midwife. From her example I learnt to help those in need. Maybe because of my flighty ways I went to boarding school at 7 year 11 months, and I was up to the grade so my teacher had me repeat a grade without them consulting my parents. I eventually learnt how to work hard. Now I finishing of my second masters degree I encourage other women to know that we are more capable of more than we can imagine. Physically too. Set your mind to something and ask for help if you are lost and just keep putting one foot in front of the other.

And as you go always be  encouraging others along the journey too. I now work in Public Health too just like my Mum who clearly influenced me. Thanks Mum!

We all have moments of fear but if we choose Love and self-dicipline we are powerful indeed.

For the Spirit God gave us does not make us timid, but gives us power, love and self-discipline”.

I have a dream ….for Club Dopamine!

A research survey found a significant number of Latin American (Llibre Guerra et al; 2022) people had Parkinson’s Disease symptoms but had NEVER  been diagnosed and not had medical or neurological attention.

The study didn’t ask why but we can imagine some don’t know what Parkinson’s is and others or those same people hide because of stigma and discrimination.  They become isolated which worsens their disability and increases immobility.

Parkinson’s disease has no CURE.

Raising awareness about Parkinson’s is crucial to prevent late diagnosis and start early physiotherapy/exercise.

We must explain that PD is not a curse, your fault or something to be ashamed of.

We are taking action to prevent discrimination and isolation and encourage holistic treatment including exercise which can help symptoms considerably.

We  need  help!

I have a small project I’d like to find funding for that aims to empower people with Parkinson’s (PWP) to thrive:

– to be understood,

– to stop isolation,

– and to get treatment!

Over the last few years advocates have emerged who are willing to share their stories about living with Parkinson’s in Peru. The daily struggles,  the small triumphs and the ongoing battle inspire us to continue. My story has inspired people to exercise to improve their Parkinson’s symptoms and Dorys’ story about the family’s sacrifice has had immense international feedback.

I just published Ray’s story , and it is turning heads and breaking stigma. In 3 weeks it has had 1000 views and lovely comments.  All this without  marketing, imagine what we could do if we had a marketing budget.

Stories connect us. Stories about family. The love seeps into our hearts: strained voices, biting of lips, and love in a look. We have these treasures(interviews) in our hands as I filmed them with a professional in 2021  but they need to be edited and marketed for maximum exposure.

I can’t take this on. I’d like to see it created into a documentary for a film festival. It will give an editor a wonderful creative opportunity. They’re in Spanish but modern technology means this isn’t a barrier. I don’t know how it is going to get made but I have faith it will be made and will be a powerful approach to breaking down stigma but not in an educational boring way…

Watch the first story which happens to be in English and catch a bit of the essence of this project.

I have a dream….but I have had many dreams and I know I often get above and beyond what I expect. It is happening in my life right now …but that’s another story.

I dream not for myself but for those who message me in pain in the middle  of the night, Sara has no neurologist, no exercise coach, she can’t sleep  because of the pain.

For Sara and many more… For Club Dopamine!  May this project get the funding or passionate philanthropist it needs.

Llibre-Guerra JJ, Prina M, Sosa AL, Acosta D, Jimenez-Velazquez IZ, Guerra M, et al. Prevalence of parkinsonism and Parkinson disease in urban and rural populations from Latin America: A community based study. The Lancet Regional Health – Americas. 2022 Mar;7:100136.

Ray’s story:

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