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
I was on vacation, relaxing when I met a friendly guy in the same hotel, let’s call him Kevin. He is traveling alone, in his 50’s and my 6th sense told me there was a reason why I should chat with him. But he worked in real estate, no connection there!
But when I told him about my PD association he was full of advice as he had worked in pharmaceuticals previously. He said I should get a social media plan for my organisation. Of course I know that social media is important to get the message out so I nodded politely when he kept pushing this point.
But the next day he went from a different angle, the more members you have the more you can influence. I have about 100 members and maybe contact with 200 nationwide.. not enough to get this on the national agenda, not even enough for the pharmaceutical companies to take me seriously he says. He said if you can get 5000 people then you have power.
The penny dropped.
So we need to use paid advertising in social media to get it beyond PD circles. It turns out Kevin had a deceased parent with Parkinson’s and it was clear he’d never heard of such support groups. Point made.
Activate (my NGO) needs to have a presence that cannot be ignored, so that Parkinson’s treatment and education are actually on the agenda. And so that pharmaceutical companies will come to the party with conference funding, educational resources and doctors etc. Let’s be honest – we’ll always need them, but they need us too and if we group together, just maybe we can influence them for the better.
I asked Kevin to help me draft a letter to send to the pharmaceutical companies which he kindly did but now I’ve got to step back and set up my systems to meet the swell of responses that will come in from my media campaign (create that too) and automated response forms and information sheets etc. Yes, this could take months but April is Parkinson’s awareness month so that could give me a good target.
It is funny how even on vacation the coincidental meetings with people can influence work.
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.
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
I started the “Parkinson’s secrets to living successfully” video project kind of on a whim. I put it out there as an idea on twitter to see what responses I’d get. It wasn’t long before I got a few interested people responding and sending me their videos. The responses confirmed my hutch that exercise is beneficial and the message worth sharing with the Parkinson’s community.
Secondly I felt the mix of people would really communicate and connect with more people.
A variety of ages and ages of onset of PD from 30s to 60s
A variety of shapes and sizes
A variety of sports and exercise styles and intensity
A variety of English speaking countries – USA, Canadian, Wales, Scotland, England, New Zealand and Australia.
A variety of experiences, and
all united in the benefits of exercise in treating Parkinson’s disease!
The third realization was that this project was actually going to take a lot of work. I spent a lot of time editing the videos and asking people to send more information or more photos and move video footage. It has all been worth it and thankfully the whole team has been very obliging and positive through the whole process.
The fourth realisation was that we wanted to create a directory of PD organisations that people who had been inspired could contact. Each of the team provided me with details of the Parkinson’s associations and organisations that had helped them and in their context/experience.
And the fifth realisation was that each of the team was willing to share the video with their contacts and organisations related to Parkinson’s. It is thanks to them that the video I has had 1200 views in just over 3 weeks! Video 2 has had over 400 too.
As I watched their stories I got to know them, their hard work became household conversation at our dinner table, their trials and successes and interesting facts. When the kids came into the office they said “that is Tanya” or “that is …”. The funniest comment was my son – he said “Is that my grandma?”. He is nine so not the least bit confused but these folk kinda feel like friends and family.
I loved the inspiring individuality each brought to the project and I wanted to include all their stories but I couldn’t… I can’t wait to meet them at the World Parkinson’s Congress in Barcelona in JUNE 2022!
My favourite details and quotes(from menory) about the team:
John Blogger, Runner and very involved with TEAM Fox.
“Find what you enjoy…I do it for the medals!”
Miriam What a long list of sports she plays that I couldn’t include! Impressive! She is a World Parkinson Congress Ambassador
“Exercise is a great antidepressant”.
Kitty Comedian, Mother to 4 kids including twins and certainly full of personality.
“I hate exercising!”
Tanya ‘ She is a weight lifter, need I say more? She runs a podcast Parkinson’s Road and is now becoming a fitness instructor. I loved her honesty!
“I’d cry on my way to the gym”
Jon He has visited every Rock Steady boxing in the USA, he surfs, does hard obstacle races and he is an ambassador the World Parkinson’s Congress
”Some used walkers and they don’t need them after taking up boxing”
Emma Ninja warrior, She does karate and so much more. This lady can do cartwheels and handstands better than me and without training! She has 3 kids and was nice and honest too.
“I need it (exercise) in my day – If I don’t I get grumpy”
Eirwen She is already an avid campaigner in the PD Community and shared our video widely. I loved her input and feedback!
“I can play with the grandkids in the floor”
Jonny Doctor, artist, animator and finalist for WPC video competition. Check out his socer balls skills. Impressive!
”Set yourself a goal, if you fail just keep trying”
Alison Boxing cycling, you name it! Amazingly strong!
“It doesn’t matter what you do… just start doing something”
Google analytics tell me that New Zealand is our highest video viewer, thanks to Robyn and Emma and Kitty, despite it’s small size.
“It fixed my frozen shoulders”
Euan He sent me amazing footage of him doing amazing things – I wished I could have used it all!
“It is theraputic hitting things” (boxing bags not people I assume).
A.C. He is an outdoor kinda person, hiking, canoeing you name it. He is also a World Parkinson’s Congress (WPC) Ambassador and is our brave team leader of the ambassadors.
“See you in Barcelona!”
And finally me: Christine – My claim to fame in the Parkinson’s world is my video “Handstand for Parkinson’s, also a finalist at the WPC 2019 and I too am a WPC Ambassador. My focus is encouraging everyone to come to the Parkinson’s World Congress 2022. I am so pumped to meet my team and you can meet them too (of course I am assuming they are all coming!) I’ll quote AC says“See in Barcelona!”
So here is to the team and a sequel video in Barcelona at the World Parkinson’s Congress 2022.
“The Amazing Benefits of Exercise in combating Parkinson’s Disease”. People with Parkinson’s from around the globe unite to share their stories. #parkinsonsawarenessmonth #empoweredbyexercise #Parkinsonssecrets #parkinsonsdisease
Thirteen people with Parkinson’s from all around the world have joined forces to create a video about the benefits of exercise. Each has been diagnosed with Parkinson’s disease, a neurological degenerative movement disorder that affects one’s balance, ability to walk, coordination and range of movement. Each experiences Parkinson’s differently but one thing is quite common – People with Parkinson’s are often apathetic or struggling with motivation because of the shortage of dopamine. Muscle stiffness can make movement difficult, but fighting this movement disorder requires movement.
These Parkie’s are all passionate about one message. They want to encourage others to exercise to combat Parkinson’s because they’ve benefited dramatically; physically and emotionally. Most have found a sport they love which keeps them motivated and a community that helps motivate them too. This video comes with a sequel discussing “What keeps you motivated”.
These empowered people implore you to:
“Start exercising, any physical activity you enjoy doing. Then do it with determination and intensity”.
Though the world has stopped for COVID19, Parkinson’s disease never takes a day off and neither should you. Waiting to begin an exercise regimen is not an option. This video inspires and gives hope in a time of crisis.
Australian Christine Jeyachandran initiated this video project because she wanted to encourage others positively and knows what it is like to struggle:
“I had to overcome apathy, doubts, fatigue, and fear but the benefits have been worth the effort” says Christine. Christine was diagnosed at 37 year of age with Parkinson’s Disease. Her storyHandstand for Parkinson’s was selected as a finalist at the World Parkinson’s Congress amateur video competition. She grew in confidence, set new goals and kept training. She made aBefore and After video which systematically shows contrasting footage of her balance, coordination, flexibility and sheer strength and it has inspired the Parkinson’s community.
“The power of exercise and targeted physical activity to help people live well with neurological conditions cannot be overemphasized” stated Professor Meg Morris Parkinson’s exercise expert researcher and Head of Allied Health and Professor of Clinical & Rehabilitation Practice at La Trobe University, Melbourne Australia.
The Sequel to this video is “What keeps you motivated?” which is an equally necessary topic. Click this Link below:
I am so glad you are reaching out to find Parkinson’s exercise classes. It will be hard but as you’ve seen on the video, our team knows it is worth it.
It might be best you try your local Parkinson’s association and they can tell you what is running locally. This list is from the English speaking world of the video participants. We’re happy to add other groups little by little. Just comment on the post.
Over a 100 people attended the visit of Dr Karlo Lizarraga. He was so genuinely interested to meet people and hear and answer their questions. He is from Arequipa but lives in the US.
More than 60% of the attendees were new contacts for Activate and we now have doubled the number of people with parkinson’s we have with 80 with almost 60 on the whatsapp group and new calls coming in everyday.
I was thankful for all the people with Parkinson’s (PWP), friends and family of Activate who helped out. We also couldn’t have done it without Dr Isabelle Carmago organising a huge auditorium in the hospital. Volunteers did registration, drinks table and brought gifts.
I didn’t want to talk too much so Elizabeth shared beautifully her story. Juan brought tears to my eyes as he shared that he has new hope for the future. Juan kinda took over the show and isn’t that what every leader wants, people empowered to step up and take things on.
Another friend who helped with the projection – at last minute she went out of her way to go and borrow a projector and set it up. Then the video wouldn’t play. So we struggled and finally got it going but without sound. Thankfully my friend Favi who kindly took the photos of the event noticed the problem and corrected the sound and we restarted with sound. What a relief. The video was a new before and after of my experience with gymnastics.
As it was finishing the lady beside me leaned in and said “so exercise helps with Parkinson’s disease”….yes!!!! I reiterated this point again that yes exercise can improve your symptoms and movement and increase your quality of life.
Dr Lizarraga is introducing a form of telecare which should be able to help the Peruvian patients but it is early stages so I won’t try and explain it. Dr Lizarraga is also working on advancing the training of neurologists here so that should people with Parkinson’s.
DR Lizarraga visit and the patient support our group provides is something exciting for the community of Parkinson’s and I hope and pray especially the professional community will be willing to be trained in new methods of managing parkinson’s.
Our next event aims to help train professionals to assess Parkinson’s patients and recommend exercise plans for them with Dr Koni Mejia from LIMA. We’ll be doing this on a practical way with real patients and teaching some exercises that help PWP.
Special thanks to Dr Lizarraga for helping us in effect “launch” Activate in a more prominent way. He has also helped me think through some of the issues and define our aims too. Organising his speaking engagement (with the hospitals help) has turned into a mentoring role, even if by email. Thanks Dr Lizarraga.
ESPAÑOL – Visita del Dr. Karlo Lizarraga a Arequipa
Más de 100 personas asistieron al conversatorio del Dr. Karlo Lizarraga. Estaba tan genuinamente interesado en conocer gente y escuchar y responder sus preguntas. Él es Arequipeño pero vive en los Estados Unidos.
Más del 60% de los asistentes eran nuevos contactos para Activate. Tenemos ahora 80 contactos, y 60 en el grupo de WhatsApp y nuevas llamadas todos los días.
Estaba agradecida por todas las personas con Parkinson (PWP), amigos y familiares de Activate que ayudaron. Tampoco podríamos haberlo hecho sin la Dra. Isabelle Carmago organizando un gran auditorio en el hospital. Los voluntarios se registraron, cuidaba un mesa de bebidas a y trajeron regalos.
No quería hablar demasiado, así que Elizabeth compartió bellamente su historia. Juan trajo lágrimas a mis ojos cuando compartió que tenía una nueva esperanza para el futuro. Juan ayudaba con el programa y esto es lo que todo líder quiere, la gente está capacitada para dar un paso adelante y asumir las cosas.
Otra amiga ayudó con la proyección, en el último momento, ella hizo todo lo posible pedir prestado un proyector y configurarlo, pero el video no se reproducirá, así que luchamos y finalmente lo pusimos en marcha pero sin sonido. Afortunadamente, mi amiga Favi, quien amablemente tomó las fotos del evento, notó el problema, corrigió el sonido y lo reiniciamos. Qué alivio. El video fue un nuevo antes y después de mi experiencia con la gimnasia.
Cuando estaba terminando, la señora a mi lado se inclinó y dijo “así que el ejercicio ayuda con la enfermedad de Parkinson” … ¡sí! Reiteré este punto nuevamente que sí, el ejercicio puede mejorar sus síntomas y movimiento y aumentar su calidad de vida.
El Dr. Lizarraga está introduciendo una forma de teleasistencia que debería ser capaz de ayudar a los pacientes peruanos, pero es una etapa temprana, así que no intentaré explicarlo. El Dr. Lizarraga también está trabajando para avanzar en la formación de neurólogos aquí para las personas con Parkinson.
La visita al DR Lizarraga y el apoyo de los pacientes que nuestro grupo brinda es algo emocionante para la comunidad de Parkinson, espero y oro especialmente para que la comunidad profesional esté dispuesta a recibir capacitación en nuevos métodos para manejar el Parkinson.
Nuestro próximo evento tiene como objetivo ayudar a capacitar a profesionales para evaluar a los pacientes de Parkinson y recomendarles planes de ejercicio con el Dra. Koni Mejía de Lima. Haremos esto de manera práctica con pacientes reales y enseñaremos algunos ejercicios que ayudan a PWP.
Un agradecimiento especial al Dr. Lizarraga por ayudarnos en efecto a lanzar “Actívate – Liga Contra el Parkinson” de una manera más prominente. También el doctor me ayudó a pensar en algunos de los problemas y a definir nuestros objetivos Mientras organizando su compromiso de conversatorio (con la ayuda del hospital), el se a convertido en mentor para mi, incluso por correo electrónico. Gracias Dr. Lizarraga.
I am in the newspaper again to educate society that exercise is so important to improve parkinson’s symptoms and improve quality of life. Estoy en el periódico otra vez. Todo para educar la sociedad sobre la enfermedad de Parkinson: El ejercicio reduce los síntomas y por lo tanto mejora la calidad de vida. Por favor poner comentarios en “Encuentro”. Gracias Link to Newspaper: http://encuentro.pe/deportes/la-gimnasia-artistica-como-terapia-del-parkinson/