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)
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.
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.
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?
“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.
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.
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.
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.
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.
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
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.
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.
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.
Many of you have read about my struggle to get my drivers license in Peru and I haven’t updated you on the follow up.
The first observation was that the 2nd or 3rd time I drove the car an incident happened that woke me up to the realities of the roads in Peru.
I was driving along a main road which had a side line that merged into my line. I saw a bus coming quickly and I let it in and continued. Before I knew it I heard honking and turned to see a male driver in car looking rather annoyed at me from the merge lane. He was about even with my back seat window and he was asking (not so politely) why I didn’t let him in.
I was stunned. I kept moving knowing he couldn’t get around me as I was ahead and I had the right of way as I was on the main road. He proceeded to drive around me and yell at me from the other side as we drove along. Such lack of knowledge of road rules surprised me. I realised that we were in a different world where logic wasn’t aligned with the road rules.
The road rules around the world are basically the same – we looked it up actually. In the drivers test the tester had said you are over the line “you have killed a pedestrian”. I was lined up perfectly with the said line. I got out of the car to check and said “I have been driving for 20 years in my country and I have never hit a pedestrian”. He said the rules are different here. Yup… no they are not! The road rules at least in theory are the same. Practice is another story.
So I learnt the Peruvian way of driving.
1. To get across an intersection you must put the nose of your car in or you’ll never get through and everyone behind you gets very angry.
2. Likewise use your horn at any slowness. That really got on my nerves.
3. You must pull your car within 3 centimeters of the car in front at the lights or someone will stick their car nose between yours and the other.
So driving in Peru was a little stressful but the nail in the coffin was the fact that our radio of the car got stolen from the car at the gymnastics facility twice. We got the car to help us get to gymnastics and school but it was clearly not the safest place to park.
There were a few other issues I won’t go into but driving a manual was hard work in stop-start traffic. So with sadness we decided to sell our little Hyundai. Her number plate was VXY, so I had nicknamed her Vexy from the word vexed and that is what it is like to drive in Peru.
Ironically I have this 10 year licence in Peru and I’m not driving. I’d love a little automatic old car some days (especially as we come out of lockdown) but we do fine with Taxi’s usually. I haven’t been in a car for 109 days as we live close enough to walk to many shops so the need is minimal.
It is far less stressful and though driving yourself might be cheaper, when you count the robbery costs and stress… I think we are better off.
Do I regret anything? No … I understand a lot more about corruption and feel like “walking a mile in Peruvian shoes” was good for me.
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Usually activities shut down over Christmas/ new year but something in me said “Let’s start this group and keep the momentum going”. So we started in November and continued with meetings in December, January and February and March with Dr Karlos Lizarragas’s visit. It was a busy few months but it turned out to be a good decision because the week after the Doctors visit we all went into lockdown. I was grateful that I got to know the people who came and connect with them over the ‘summer break’. Now we can’t meet and it is day 108 of the lockdown and we’ve got at least a month to go and because many are elderly and at risk it will be some time before we can meet again.
This is a newspaper article that appeared in the CORREO newspaper the week Dr Karlo came. I have attached the link but have included a rough translation as the article in in Spanish. It might be old news but it reminds me to keep sending them messages of hope and encouragement by whatsapp or sms to my people here and since I didn’t translate this is earlier it is still new to most of you. Please note it is a loose translation and sounds a little strange but you can get the gist. 😉
This article is titled: “Those affected by Parkinson’s take on the challenge to to fight against Parkinson’s”
The Activate Association of Parkinson’s is growing and on Tuesday, March 3, they will receive the Arequipa neurologist Karlo Lizárraga Mendoza 03/01/2020 at 12:30
Last December, The Correo (newspaper) spread the encouraging message of Christine Jeyachandran, an evangelical Christian missionary, who manages well her symptoms in her body although it is affected by the disorder of the central nervous system. Three months later, her aim to create the Parkinson’s League – ‘Get Active'(Activate) is paying off with 26 people attended the last meeting. Christine, who has overcome the limitations of the disease through gym sessions, wishes her peers a similar experience. The first step, and perhaps the most difficult, has been to encourage this significant group of people of different ages to come along and not hide at homes. They are now the founding members of Actívate, and the next step will be to involve everyone in physical exercise as therapy.
Limitations. Parkinson is terrible: the physical limitations, the inability to speak loud and clear, tremors, dragging feet, drooling, diminished facial expression, the lack of balance, the frustration of not walking well, all this causes a heavy load of vulnerability that you carry to everywhere” says Christine to describe the diagnosis of parkinson’s. Activate began on November 3 with 5 members supported by two professionals from the Honorio Delgado Espinoza hospital, one of them is the psychologist Rita Ames who has strengthened Christine’s knowledge of group management and emotions of those affected by the disease.
Since then until February, they have met three times and each time the number of members has increased, reaching 26 people who have left isolation and are willing to continue on the path of integrating and growing the League, eager to achieve control of your movements. “Affected people do not have to be embarrassed in our meetings. You don’t have to explain your symptoms to anyone here because we understand each other. The reason for our name, Get active (Activate yourself), is that we want to do gymnastics, but we haven’t started for various reasons, but the first thing is that they came out of hiding, “says the promoter of the organization excitedly. In these sessions, with the help of the psychologist Rita Ames, everyone can share their ideas, some very shy and others less, they tell their stories, tears are not lacking because they finally have people by their side who understand them.
TO THE FAMILY. The meetings are focused on educating people and their families about the disease and about exercises that can help overcome their symptoms to improve their quality of life. Rita Ames indicates that many suffer from depression and apathy but they are explained how the Activate League will work, that is, with their participation. They find it hard to stop focusing on their weaknesses, but little by little they have shown hope in their eyes. One of the participants, Juan, acknowledged that at first he was only interested in reinforcing his depression due to the disease and its symptoms, but now he maintains the hope of engaging in physical exercises as a means of reducing them and thus improving his quality of life.
MUCH FAITH. “Telling PD patients they have a movement disorder and leaving it at that is a self-fulfilling prophecy. It would be better to tell them, “You have a disorder in which the motivation for movement is significantly impaired, along with movement . But by knowing that, and using conscious mental effort, you may be able to override the impairment to a significant degree” says Canadian psychiatrist Norman Doidge, and members of the Activate League have begun to believe it.