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)
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’.
Ambassador of the World Parkinson Congress 2022
Blog: English and Spanish https://handstandforparkinsons.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
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
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.
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.
Quick note: Please subscribe to my blog to get new updates. Thank-you for reading and commenting too.
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.