Peru

RAYO DE ESPERANZA ganó el concurso de vídeos elegidos por el público en el Congreso Mundial de Parkinson

THIS ARTICLE APPEAR IN ENGLISH BELOW:

El vídeo de Christine Jeyachandran “Ray of Hope” (“Rayo de esperanza”) ganó el concurso de vídeos elegidos por el público en el Congreso Mundial de Parkinson celebrado a principios de julio.

El vídeo fue presentado en la ceremonia de apertura del Congreso Mundial de Parkinson, ante miles de personas en Barcelona (España). El vídeo cuenta la historia de Ray y Ana María, una pareja Irlandesa-Peruana que vive en Perú y se enfrenta al diagnóstico de Parkinson y al estigma asociado a la enfermedad.

Christine, que padece Parkinson de aparición temprana desde los 37 años, dirigió y editó Ray of Hope. “Ray y Ana María encontraron mi vídeo Handstand for Parkinson’s, que fue finalista en el concurso de vídeos WPC en 2019, en Japón.  Decidimos conocernos ya que ambos vivíamos en Perú y nos hicimos amigos.

Christine decidió hacer un documental para crear conciencia sobre el Parkinson y entrevistó a 5 personas incluyendo a Ray. No ha podido completar este proyecto, pero quedó impresionada por la elocuencia de Ray y decidió hacer “Ray of Hope” (Rayo de esperanza) como cortometraje para el concurso de vídeos del Congreso de 2023.

Ray y Ana María participan en un grupo de apoyo en Lima para personas afectadas por el Parkinson (pacientes y cuidadores). Muchos enfermos de Parkinson se enfrentan a problemas físicos, así también como la depresión y el aislamiento, que agravan su deterioro. Muchos carecen de acceso a información y recursos.

Christine quería que Ray y Ana María asistieran al Congreso para conseguir más recursos para ayudar a las personas con Parkinson de Perú. Puso el vídeo a nombre de Ray, para que si por casualidad ganaba, el premio ayudara a Ray a ir a la conferencia. Christine ya estaba inscrita para asistir y hablar, pero Ray recibió una beca de viaje y apoyo del WPC para ayudarles a llegar hasta allí. Están muy agradecidos.

El vídeo tiene visitas y votos de Perú, Australia, Irlanda, de América Latina y de todo el mundo. Christine y los protagonistas quieren dar las gracias a todos los que han votado y les han ayudado a ganar el premio del público.

Christine dice: “Ray estaba encantado con la victoria. Viajó a España para recibir el premio y su hermano vino desde Irlanda para verle allí”.

Aunque el video de Christine no ganó en 2019, se sintió tan inspirada por el Congreso que creó un grupo de apoyo en su comunidad del sur de Perú, donde vivía en ese momento, y cofundó la Alianza de habla hispana que abogan por una mejor atención e investigación, y fue elegida embajadora del WPC. Ella ve que el congreso ha entusiasmado a Ana María y a Ray.

Ray: ¡Conté mi historia porque quería liberarme! Me sentía oprimido por el Parkinson. Al abrirme al mundo y compartir mi historia creo que me ayudé a mí mismo y a otros a ver la esperanza más allá de la enfermedad.

Christine: “Los comentarios y las reacciones han sido alentadores y esperamos que Ray of Hope desafíe el estigma asociado al Parkinson. Algunos dicen que en el Oeste no existe el estigma, pero ¿por qué tanta gente oculta su diagnóstico? 

Por favor, comparta este vídeo para ayudar a la gente a entender el Parkinson, pero también tenga en cuenta que cada persona experimenta el Parkinson de manera diferente.

https://youtu.be/moq1JRD4qPs

 

Popular Choice Award at WPC 2023 goes to Ray of Hope

‘Ray of Hope’ wins the Popular Choice Award at the  World Parkinson’s Congress 2023

19th July 2023

Christine Jeyachandran’s video ‘Ray of Hopewon the people’s choice video competition at the World Parkinson’s Congress in early July.

The video was featured in the World Parkinson’s Congress opening ceremony in front of thousands people at the  in Barcelona, Spain. The video tells the story of Ray and Ana Maria, an Irish Peruvian couple living in Peru who are dealing with a Parkinson’s diagnosis, the stigma associated with the disease.

Christine, who has had Young Onset Parkinson’s from the age of 37,  directed and edited Ray of Hope. “Ray and Ana Maria found my video Handstand for Parkinson’s  which was a finalist in the WPC video competition in 2019, in Japan.  We decided to meet as we both were living in Peru and became friends.

Christine decided to make a documentary to raise awareness about Parkinson and interviews 5 people including Ray. She has been unable to complete this project but was struck by Ray’s eloquence and decided to make ‘Ray of Hope’ as a short film for the Congress video competition for 2023.

Ray and Ana Maria are involved in a support group in Lima for people affected by Parkinson’s (patients and carers). Many with Parkinson’s face physical challenges as well as depression and isolation which compounds their decline. Many lack access to information and resources.

Christine wanted to get Ray and Ana María to attend the Congress to get further resourced to help the people in Peru with Parkinson. She put the video in the name of Ray, that if by chance it won, the prize would help Ray get to the conference. Christine was already booked in to attend and speak, but Ray received a travel grant and support from the WPC to help them get there. They are so grateful.

The video has views and votes from Peru, Australia, Ireland, from Latin America and throughout the world. Christine and the protagonists want to thank everyone who voted and helped them win the people’s choice award.

Christine says “Ray was overjoyed with the win. He travelled to Spain to receive the award and his sibling came from Ireland to see him there”.

Although Christine video didn’t win in 2019, she was so inspired by the Congress she started a support group on her community in the south of Peru, where she was living at the time and cofounded  Spanish-speaking Alliance of stakeholders advocating for better care and research was chosen as an ambassador for the WPC. She sees that the congress has enthused Ana Maria and Ray.

Ray: I told my story because I wanted to break free! I felt oppressed by Parkinson’s. By opening up to the world and sharing my story I believe I helped myself and others see the hope beyond the disease.

Christine: “The comments and feedback has been encouraging and it is our hope Ray of Hope will challenge the stigma associated with Parkinson’s. Some say in the west but if there is no stigma, then why do so many people hide their diagnosis”. 

Please share this video to help people understand Parkinson’s but also note that everyone experiences Parkinson’s differently,

https://youtu.be/moq1JRD4qPs

 

https://youtu.be/moq1JRD4qPs

Handstand for Parkinson’s: https://youtu.be/h1B6kUgN6WQ

 

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:

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. 

Would you sell your house to save you mother?

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.  

Tough year for PD Community In Peru

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

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

Two events in 1 week: Dos Eventos en Espanol

Esta vez he colocado el español en primer lugar debido a los eventos, pero solo desplácese hacia abajo para ver la versión en inglés de este blog.

This time I have placed Spanish first because the events but just scroll down for the English version of this blog.

Estoy involucrada en dos eventos esta semana. El primero es un iniciativa mía y ayudé a organizarlo. He visto la necesidad, que los fisioterapeutas reciban más formación sobre el Parkinson, así que me puse en contacto con LSVT, una organización de fisioterapia y terapia de la voz con sede en los EE. UU. Mi papel ha sido principalmente la traducción entre los locales y Angela de LSVT. Aprendo mucho sobre la realización de eventos en Perú y el trabajo transcultural.

Estoy emocionada para el evento el viernes. Angela esta planeando mostrar uno de mis videos para brindarles a los asistentes una visión de cómo el ejercicio puede beneficiar a alguien con Parkinson. Incluso en Occidente, los fisioterapeutas les gustan mis videos por las mismas razones. Este evento está más enfocado en profesionales y la esperanza es hacer más formación y acreditación el próximo año.

Inscribirse:

El segundo evento es otro evento en español, para promover el Congreso Mundial de Parkinson, que se celebrará en Barcelona en 2022. El evento está organizado por Claudia Martinez del Muhammad Ali Parkinson Center, Barrow Neurological Institute.

En mi rol de Embajadora, se supone que debo ir a conferencias y visitar asociaciones para promover el evento, pero con COVID, nos vemos obligados a realizar eventos en línea. Todavía espero promocionar en persona el próximo año, pero hasta que las cosas se calmen, esto y los mensajes en línea son la mejor opción.

Inscribirse aquí:

https://zoom.us/webinar/register/WN_PuA4c5BRQS2CGf01hp1b0Q

Si tiene eventos en los que podría hablar, comuníquese con nosotros y ven el lunes a este evento. Es para profesionales y personas con Parkinson.

ENGLISH – TWO EVENTS THIS WEEK

I’m involved in two events this week. The first I initiated and helped organise. I have seen a need here for physiotherapists get more training in Parkinson’s so I made contact with LSVT, a US Based physiotherapy and voice therapy organisation and after months of planning the event is on the 20th of November. My role has mainly been translating between the locals and Angela from LSVT. I learnt much about running events in Peru and working cross culturally.

I can’t wait for the event on Friday. Angela is planning to show one of my videos to give the attendees a vision for how exercise can benefit someone with Parkinson’s. Even in the west, physiotherapists like my videos for the same reasons. This event is more focused on professionals and the hope is to do further training and accreditation next year.

The second event is another Spanish event to promote the World Parkinson’s Congress, which is in Barcelona in 2022. The event is organised by Claudia Martinez of the Muhammad Ali Parkinson Center, Barrow Neurological Institute.

In my role as Ambassador, I’m supposed to go to conferences and visit associations to promote the event but with COVID we are forced to do online events. I still hope to promote in person next year but until things calm down, this and messages online are the best option.

If you have events that I could speak at please get in touch and come along on Monday to this event. It is for professionals and people with Parkinson’s.

Newsletters and their importance – Noticias en Español.

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

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