Handstand for Parkinson's

Parkinsons /Friendships

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:

Would you sell your house to save you mother?

Posted on April 3, 2021 by community En Español Parkinsons /Friendships Peru Uncategorized 0

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)

Please use these hashtags on social media:

#SellHouseSaveMother, #ParkinsonsDisease, #ParkinsonPeru, #NoMoreSuffering

The video is also available on youtube fully in Spanish.  

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

P de Parkinson – Spanish Blog

Posted on January 3, 2021 by Blogs Parkinsons /Friendships 0

English is below- “Spanish blog”

https://pdeparkinson.blogspot.com/

Este es un blog en espanol que vale la pena seguir. Este blog es escrito por Anna Gómez Grau:

Con P de Parkinson intenta ser un blog para aquellas mujeres que deseen expresar sus sentimientos y su vida a raíz del parkinson. Esa dualidad de lo que sentimos ser y lo que somos, entre nuestro deseo y nuestra realidad.

Mirarte al espejo y ver como tu expresión va cambiando. Pequeños signos que pasan desapercibidos para los demás y son tan físicos para nosotras.

Vivir con esta enfermedad no es fácil, con ninguna lo es, y cuando te dicen que bien estás, que bien te veo, yo me cambiaría por ellos en ese momento.

Queremos crear conciencia sobre el Parkinson de Inicio Temprano y la mujer, para que los síntomas se valoren diferente al de las personas mayores diagnósticada de Parkinson .

Se necesita más investigación sobre el impacto del Parkinson en los jóvenes y en la mujer.

“Y mientras intento silenciar mi condición de mujer que padece una enfermedad (que no es lo mismo que de mujer enferma) me gustaría gritarle al mundo que ¡tengo Parkinson! para que el mundo no pierda la paciencia por mi falta de agilidad, deje de mirarme como a un bicho raro y empatice conmigo. Y que empatice de verdad, no como un acto de misericordia, si no desde la igualdad y la solidaridad.

Y de esta manera, con nuestros escritos en este blog, siento que estamos gritándole al mundo: ¡Miradnos! ¡Estamos aquí! ¡Y no pasa nada! Por ello, pienso que sería una lástima que “Con P de Parkinson” se limite a ser un foro de mujeres con Parkinson que nos leemos unas a otras. Fuera de aquí existen muchas mujeres y hombres que no padecen la enfermedad de Parkinson y que se merecen saber más de ella. Y de nosotras. Y nosotras nos lo merecemos también.” Anna Gómez Grau

https://pdeparkinson.blogspot.com/

This is a guest post form a Spanish Blogger which I have translated to English here so you can hear why she blogs. It is a great encouragement to Spanish speaking women with PD and I'll be sharing it with my community.

Anna Gómez Grau:
With P for Parkinson's is a Blog - It is a blog for those women who want to express their feelings and their life as a result of Parkinson's.

That duality of what we feel we are and what we are, between our desire and our reality.

Look in the mirror and see how your expression is changing. Small signs that go unnoticed by others and are so physical for us.

Living with this disease is not easy, not with any disease, and when they tell you that you seem fine, that you look well, I would change places with them at that moment.

We want to raise awareness about Early Onset Parkinson's and women, so that the symptoms are assessed differently from those of older people diagnosed with Parkinson's.

More research is needed on the impact of Parkinson's on young people and women.
And while I try to silence my condition as a woman suffering from a disease (which is not the same as a sick woman), I would like to shout to the world that I have Parkinson's, so that the world does not lose patience due to my lack of agility. Stop looking at me as a freak and empathize with me, and really empathize, not as an act of mercy, it is about equality and solidarity.

And in this way, by writing on this blog, I feel like we are yelling to the world: Look at us! We are here! And nothing happens! Therefore, I think it would be a shame if "With P for Parkinson's" is limited to being a forum for women with Parkinson's that we read to each other. Outside of here there are many women and men who do not suffer from Parkinson's disease and who deserve to know more about it. And of us. And we deserve it too. 
Anna Gómez Grau
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Tough year for PD Community In Peru

Posted on December 31, 2020 by Activate -:Liga/Association community new years resolution Parkinsons /Friendships Peru WORLD PARKINSON'S CONGRESS 0

Español Abajo: Año difícil para la comunidad de EP en Perú

It has been a tough year in Peru for people with Parkinson’s, I guess everywhere really. I have been so busy doing things by distance that I haven’t had time to write the really deep blog posts that are mulling around in my head. I’ve even started some but they need more work.

So when Parkinson’s life Magazine asked me to reflect on the year and how the community was doing and our resolutions for the new year I got straight onto Whatapp. I asked my community what it was like for them and some commented, some filled in a mini survey and and some I talk to.

It also gave me a chance to think about the aims I have for next year and re-reading them again today made me think I better do x,y and Z to get these achieved.

So here’s the article with my comments along with those from others around the world.

https://parkinsonslife.eu/new-years-resolutions-parkinsons-community/

They didn’t use the photo I sent in of representatives of my community, Susan (physiotherapist and Ramiro – PWP) so here it is. They’ve been a great encouragement to me this year so thank you Ramiro and Susan.

Happy New Year everyone and what is your new years resolution?


Español
Año difícil para la comunidad de EP en Perú

Ha sido un año difícil en Perú para las personas con Parkinson, supongo que en todas partes. He estado tan ocupado haciendo cosas a distancia que no he tenido tiempo de escribir los blogs realmente profundos que están dando vueltas en mi cabeza, algunos incluso están empezados pero necesitan trabajar.

Entonces, cuando la revista Life de Parkinson me pidió que reflexionara sobre el año y cómo le estaba yendo a la comunidad y nuestras resoluciones para el nuevo año me hice pensar. Fui directamente a whatapp y le pregunté a mi comunidad cómo era para ellos, algunos comentaron, otros completaron una mini encuesta y algunos hablábamos, así que he escuchado cómo les está yendo.

También me dio la oportunidad de pensar en los objetivos que tengo para el próximo año y volver a leerlos hoy me hizo pensar que sería mejor hacer x, y y Z para conseguirlos.

Así que hoy salió la edición en la que aparecen mis comentarios junto con otros de otros lados del mundo.

https://parkinsonslife.eu/new-years-resolutions-parkinsons-community/

Tristemente no usaron la foto que envié con  los representantes de mi comunidad conmigo, Susan, fisioterapeuta y Ramiro - persona con Parkinson), así que aquí está. Hicieron un gran esfuerzo para venir y tomarse una foto y han sido un gran animadores para mí este año, así que gracias Ramiro y Susan.

Feliz año nuevo a todos y ¿cuál es su resolución de año nuevo?

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

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