Handstand for Parkinson's

Life living!

I have a dream ….for Club Dopamine!

Posted on February 21, 2023 by community Diagnosis En Español FUNDRAISER Life living! Parkinsons /Friendships Peru Treatment WORLD PARKINSON'S CONGRESS 0

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:

Your film has 44 wonderful comments

Posted on September 30, 2021 by Alianza Iberoamerica de Parkinson Life living! Video 0

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

Featured in Spanish Blog – Translation here.

Posted on January 26, 2021 by Activate -:Liga/Association Biblical reflections Blogs community Life living! Parkinsons /Friendships WORLD PARKINSON'S CONGRESS 0

https://pdeparkinson.blogspot.com/2021/01/fuerza-y-determinacion.html

Para leer en espanol was al enlace arriba.

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’.

Christine Jeyachandran

Ambassador of the World Parkinson Congress 2022

Blog: English and Spanish https://handstandforparkinsons.com

Spanish website: https://activateparkinson.com

Youtube: Christine Jeya, https://www.youtube.com/c/ChristineJeya

Twitter: handstand for parkinson’s @christinejeya

Frequently Asked Questions

Posted on December 11, 2020 by Diagnosis Exercise Life living! Video 0

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.

  1. 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.
  1. 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.
  1. 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.
  1. 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.
  1.  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.

If you have other questions ask in the comments or on twitter: https://twitter.com/christinejeya

My youtube channel: https://www.youtube.com/c/ChristineJeya

Featured in Podcast: When Life Gives you Parkinson’s

Posted on November 26, 2020 by Biblical reflections Life living! Parkinsons /Friendships Peru podcast/interview WORLD PARKINSON'S CONGRESS 0

Thanks to Larry Gifford for interviewing me on his popular podcast When Life Gives you Parkinson’s. Follow the link and please share it.

https://omny.fm/shows/when-life-gives-you/even-patients-can-push-things-along?t=0s

“In this episode of When Life Gives You Parkinson’s, host Larry Gifford introduces you to Parkinson’s advocate Christine Jeyachandran. Christine is an Australian living in Peru with her family. They met in Japan at the World Parkinson Congress where she was a finalist in the video competition. Her video tracked her journey to learn gymnastics with PD and ultimately achieve a handstand. Now Christine brings hope, urgency and education to her Parkinson’s advocacy through her website and videos at www.handstandforparkinsons.com “

Please take the time to listen. Several have said they appreciated it.

Apologies the picture isn’t a link

Newsletters and their importance – Noticias en Español.

Posted on September 26, 2020 by Activate -:Liga/Association Biblical reflections Diagnosis En Español eventos Investigacion Cientifica Life living! Peru Volunteer opportunitiees 0

Welcome to my blog those who are new. It is nice to have you journeying with me. I hope you enjoy or learn something here.

This is a newsletter I wrote recently in Spanish. I won’t translate it all but basically I am promoting everything that is happening in Actívate, the Parkinson’s group I created. Well, not much has happened because of Lockdown but nonetheless little things should be celebrated.

I studied community development and one thing you learn is you need to share the successes and promote your group in an ongoing way. It is nice for the participants to get mentioned and of course upcoming events and opportunities for their involvement in research are advertised.

I have included also for the Spanish speakers. If you have questions I can answer them and gradually I will tell these stories too in English.

Joy – A Poem

Posted on September 26, 2020 by Diagnosis Life living! Parkinsons /Friendships Peru Who am I/ Quien soy yo 1

The raw grief of diagnosis slowly has ebbed away,
but living on, it visits from time to time, but never to stay.
But strangely there is joy that’s hard to explain.
not joy in trouble walking, not joy in aches and pains,
not joy in insomnia, I try not to complain
But there is joy in working hard despite my fears
There is joy in achieving goals though it takes years
There is joy in comforting others and in empathy
There is joy in sense of purpose and pure clarity
There is joy in fighting for others who don’t know how.
There is joy in others helping, I’m not alone now
Today whatever raw emotions catch me unaware,
I know the best is joy and I willingly will share

Fundraising Target reached! THANK-YOU

Posted on September 10, 2020 by FUNDRAISER Life living! Parkinsons /Friendships WORLD PARKINSON'S CONGRESS Wpc for YOPD 0

Thank-you for your donations for the World Parkinson Congress travel grants fundraiser: WPC for YOPD.

We have over $2500 in donations with a few donations sent directly to us, so hence the estimation as we have yet to send through the latter and with exchanges rates we will confirm later.

The grants are international but in the thank-you video attached we specifically mention helping Peruvians as they will be a priority for the funds I raised.

The 10 day challenge was fun and helped me keep exercising even though we were packing house and moving house.

Day 1: Ab workout

Day 2: Skipping and ribbon Dancing

Day 3: Gymnastics

Day 4: Bars at the Park

Day 5: Head standing and stretching

Day 6: Gymnastics (kip on floor video)

Day 7: Yoga and stretching

Day 8: Moving house – Packing and lifting boxes and suitcases. It was certainly draining even though not traditional exercise.

Day 9: Walking – Walked to the city and back plus suitcase walking in the afternoon.

Day 10: Cycling (indoors and out).

Thank-you again everyone for your support. Blessings

This is a short thank-you from the kids and I.

https://photos.app.goo.gl/SQn71WdMx1EAuowp8

I’m going to climb a mountain – Fundraiser…or plan B?

Posted on August 22, 2020 by Life living! Parkinsons /Friendships Peru Uncategorized Volunteer opportunitiees WORLD PARKINSON'S CONGRESS 0

Well I had big plans for this fundraiser: I was going to climb a mountain but COVID19 means that after 6 months we’re still on lockdown in Peru. We are only supposed to go out for shopping. So no mountain climbing. So plan B….. but first what am I fundrasing for.

Going to World Parkisnon Congress last year CHANGED MY LIFE!

I have made a short video about it on facebook:
https://www.facebook.com/591502886/videos/10157825732897887/?extid=Zl9ANwhhjbO7NBGQ

It empowered me to reach out to help the Parkinson’s community in Peru. I’ve started a Parkinson’s association in my city and I’m educating my community about Parkinson’s, drawing on what I learned the World Parkinson’s Congress. I’d like to see others with Parkisnon’s to also be empowered to help their community here in South America and beyond. I’d probably not be doing what I am doing without the inspiring experience of being a part of the World Parkinson’s Congress. 

As you can imagine getting to go to such an international event is expensive, so we are raising funds travel grants to subsidize those in need. The congress is in June 2022 and this time it is unique because it will be in Barcelona in Spain. This is super exciting for Latino’s because it means that it will be translated or presented in Spanish as well as English.  This means it is the perfect opportunity to get Peruvians and other Spanish speakers along and empowered to come back and lead their communities. 

Please donate to the link:

https://www.worldpdcoalition.org/donations/donate.asp?id=19358

My aim is to raise $2,000 before my birthday on the 28th August

Thank-you in advance for your generosity. Every little bit counts.

No mountain climbing so what am I doing? What is plan B?

A 10-day physical challenge. I will be exercising everyday sharing a video daily via facebook. I’m a little behind in posting as I had a problem I’m trying to sort out with facebook. My next blog will explain the glitch but I’ll post the first video today.

Christine Jeyachandran

Ambassador of the World Parkinson 2022

Facebook has blocked me from using their fundraiser

Posted on August 21, 2020 by FUNDRAISER Life living! Parkinsons /Friendships Peru WORLD PARKINSON'S CONGRESS Wpc for YOPD 0

I am having a fundraising for my birthday (28th of August) which is usally done through facebook fundraising but they won’t allow me to use their system because I live in Peru.

I wrote to Mark Zuckerberg an email similar to this:

I signed up in January to raise funds WPC for YOPD. The money goes directly to the World Parkisnon Congress (not to me) though it must be set up from my personal facebook account.

IT SEEMS STRANGE that I am not allowed to raise funds with facebook fundraising for my favourite charity? I went to the WPC facebook page and I can’t even donate? This fundraiser is for my birthday on August 28th. I’ll be 44.

If it was money just for a personal cause I’d understand but this fundraiser is part of a legitimate charity and you can find my profile has been on the website since January. https://wpc2022.org/page/wpc4yopd

I don’t get any money from the fundraising. I just want to help others get along as the World Parkinson’s Congress changed my life for the better.

I made a video about my story of combating parkinson’s by using gymnastics – it was one of the 12 finalists for the video competition. I have kept going ever since and now reach out to my community to help others by running classes and setting up an association.

I am already going to the WPC so this is to raise funds for others – especially my friends who can’t afford to go but I know they would benefit a lot. 

I hope Mark can resolve this.

Maybe we could get him to donate to the cause.
Please donate via this link in the interim: https://wpc2022.org/page/yopdfund


My WPC Video for the last WPC. Handstand for Parkinson’s
Christine Jeyachandran, Ambassador of the World Parkinson 2022

The initial response from facebook.

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Christine Jeyachandran

Before and After Video