Alianza Iberoamericana de Parkinson is an exciting initiative that needs support! I’m looking to generate revenue to get this life-impacting initiative off the ground. My project has been short-listed in RISE21 a competition for social enterprises that help reach the UN development goals.
Without timely treatment, Parkinson’s Disease disables many. The Alliance of Parkinson’s aims to increase the quantity, quality and accessibility of resources and training available to health professionals and patients and their families, to improve services and the quality of lives of people with Parkinson’s throughout the Spanish speaking world. See this video for more information. Please contact me by comments if you’d like to know more or can help fund or find funding for this Project:
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.
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.
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.
That may seem a strange question to use in a Parkinson’s association meeting. But that what I asked is very strategic. These people have parkinson! They have plenty of weaknesses. They are used to people asking them about symptoms and many suffer from depression, anxiety and lack of motivation. It is part of the disease though everyone is affected differently do not everyone has it.
The other reason I use such an approach is because I did a Masters in Community Development which is an aspect of social work and international development which approaches development from a different perspective. The role of the community development worker is to help the people themselves.
One of the key methods is asset-based development. Instead of going in and asking ‘what do you need’ or condescending statements or questions about their situation they look at the strengths they have. Helping people find their strengths means helping them see their worth and see how that could help each other. That is one of my aims with Activate – the Liga of Parkinson’s en Arequipa.
I also wanted to avoid the tearful diagnosis stories this meeting and keep it more positive. Not to say we won’t do these stories but not everytime we meet. Instead we started with singing, actions and dancing to a children’s song with a good latino rhythm. This helped everyone loosen up and have a bit of fun.
Feeling useful and valued brings people joy and my strategy is to get people involved in running the Liga. Let’s be honest it is a lot of work alone so having help will lighten the load too especially as the people get the hang of what is involved. Family of the people with
Parkinson’s are also invited to help out too.
We are hoping to start some sort of exercise classes for those interested so I asked if people could help find a location and teachers and or funding or the user pays. It could take some time.
We also had life size person outline on paper and we had everyone yell their symptoms, and we put up the labels on the body of where they related to. They enjoyed being the experts on the disease as we of people learn about symptoms others have.
We had about 16 people with Parkinson’s plus family. I have 42 contacts with Parkinson’s now and the Doctor just rang to say she has more people wanting to come so we a have penciled in the 11th of February for the next meeting in the same venue to keep things moving.
In all, exciting meeting and we hope and pray the enthusiasm continue.
Disability in Mission – the Churches Hidden Treasure, Edited by David C Deuel and Nathan G John
“Should you be going back to the mission field, considering your condition?” This is the question often asked of me. I was diagnosed 6 years ago on the mission field with Parkinson’s Disease at the premature age of 37. So when I found this book, I’d already been exploring its themes. But new insights came page by page through the wisdom and experience of the writers.
The point of the book is illustrated by the true story of a deacon, in the early church, burned to death because of his actions.
“Lawrence …. was ordered to bring the treasures of the church before the emperor. He collected all the poor, the sick, the lame, the elderly and disabled people he could find. Took them to the emperor and said ‘See, here are the treasures of the Church’.
The book links Biblical examples of weakness and treasure. God gives Paul strength to shine in darkness to display the face of Christ. Likewise, God says, “I will give you hidden treasures, riches stored in dark places, so that you may know that I am the LORD” (Isa 45). Paul celebrates his weakness and fragility, and the stories of the book reveal how God is glorified in the weaknesses of other humble servants.
Joni Ereckson Tada, who writes the forward, knows firsthand the ministry God brought to her because of her quadriplegia. Not easy but fruitful. The previously untold stories in the book reflect that ‘the parts of the body that seem to be weaker are indispensable’ (1 Cor 12:22). Sadly, we don’t often value every part of the body of Christ. As Nathan Johns writes:
“Often society assumes the worst about people with disabilities. They are considered as weak. Yet each of the powerful testimonies here affirms how God chooses weak people, equips them powerfully by his grace, and works through them” (and) “creatively beyond what we could imagine”.
We are all made in God’s image, each of us is loved by God and is used for his purpose.
Without giving away all the stories nor Bible references, I liked the story of a down syndrome child born to missionaries in Indonesia. In this society, and many others, they believe that a disability is the result of a curse, generational sin, or divine judgement. This child became an example of hope. They saw how this child with downs was loved and encouraged to reach her full potential, and it gave local mothers hope for their children who were different. The position of the child’s mother changed as her suffering meant “Indonesians now perceived me as being more approachable….shared weakness was like a bridge”. The book tells of people watching disabled persons or their carers and getting new perspectives on their own situation. Even being present and united in weakness can encourage others and challenge the status quo. Others’ lives have changed completely like the editor Nathan John’s, whose daughter’s disability, inspired him to coordinate community disability services all over India.
Many disabled people serve God by teaching and preaching, others vocationally and others as disability advocates. Seeing a person worshipping God in spite of their problems shows their love for God, and people start to ask questions like: “If God can give joy to the quadriplegic then I want to know more” (of Joni Erekcon Tada). Many know that life is easier in the west and think ‘yet they are here serving my people’. This speaks volumes.
God used beatings, stonings, shipwrecks and imprisonment and a thorn in Paul’s side to keep him humble and dependent on him. All in missions need to depend on God whatever the situation.
On a practical side, when disability is present we need to evaluate carefully on a case by case basis the access to needed support services, regarding health or emotional services and practicalities. Extra costs don’t need to prevent service, but prayer is needed. My mission has evaluated my situation and approved me for service. So I’m excited to be back in Peru and love reaching out to people I’d never have thought to serve.
My disease has given me a chance to speak in many meetings and churches and my videos that tell my story have been seen by thousands of people, many who say ‘you are inspiring’.
I’m just following God’s call and I’m blown away as I see how God turns weakness to his strength. It’s not easy but I hope others inspired by the book will serve God, disabled or not. I loved the book and highly recommend it to anyone even if you don’t know disabled people. I pray it touches you as it did me.
Christine Jeyachandran serves with her husband David and kids in Peru with student and women’s ministry and more recently with people with Parkinson’s Disease. Here video Handstand for Parkinson’s was a finalist for the World Parkinson’s Congress video competition:
The World Parkinson’s Congress in Japan was amazing and life changing. Researcher from around the world joined with patients and carers to hear and share about the latest scientific developments and support each other in this journey called Parkinson’s disease.
A reception for Australian’s got me started on networking. There were hundreds of Aussies and over 60 countries represented. I was the only one from Peru.
I heard talks about advocacy, diet, the best exercise, depression/ apathy and anxiety and coping with early onset Parkinson’s with family/work. Some scientific talks that went over my head and others I’m reviewing at home to remember. I did yoga, a dance class and tango which was so empowering.
I met people from all around the world and I especially tried to connect with Latinos and Spanish people and encouraged people to come visit us in Peru and maybe volunteer there. I told everyone about how tough it is for sufferers in PERU but was so excited to hear next time it will be in Barcelona so that means Peruvians can attend as the conference will be translated into Spanish as well. My video did not win – but thanks again to everyone who voted nonetheless. The winning video was professional, one of four entries by the same person and about a legendary campaigner/PWP in the Parkinson’s world who had passed away suddenly. A worthy winner indeed. It was amazing to see how different the symptoms were around us and that there must have been over 200 people under 55 with Parkinson’s at the conference. Over 2000 people attended from 60 countries. I loved it so much that I can’t wait for World Parkinson’s Congress in 2022. #WPC2022
Knowing Spanish, I hope I might help in some way with organisation as it is run by a small NGO and as you can imagine it is a mammoth undertaking and they need volunteers to help run it. Maybe you could come and volunteer too.
This is Sammy photo bombing me. Not related but fun.
Este es el enlace para recaudar fondos para el proyecto (ya borre). Está en fase de desarrollo en este momento. Estoy tratando de encontrar pacientes e invito a reunirme regularmente y buscando socios con los que trabajar, como la asociación de Parkinson de PERU (que está muy interesada en trabajar con nosotros).
El objetivo es encontrar voluntarios internacionales y nacionales y fondos para venir a enseñar / demostrar las mejores prácticas en el tratamiento de la enfermedad de Parkinson, la educación sobre la enfermedad y el ejercicio.
El proyecto también examinará a cada nuevo contacto sobre sus experiencias con Parkinson en PERÚ. A continuación se muestra un borrador del plan del proyecto, pero las cosas dependerán de las encuestas y los recursos disponibles.
Objetivos del proyecto: Educación para la enfermedad de Parkinson en Perú
Parte 1: Educar a profesionales de la salud, fisioterapeuta, patólogo del habla. Las enfermeras y otros profesionales, como trabajadores sociales, nutricionistas, educadores de la salud y más jóvenes / seleccionados sufren o miembros de la familia capaces de ayudar con la educación de otros.
¿Cómo? Invite a extranjeros o expertos locales a capacitar al grupo principal / Capacitación interactiva y práctica / Pruebas / enseñar a un vecino.
Día 1- Enfermedad de Parkinson en profundidad: Dopamina / síntomas / Drogas vs Ejercicio / mitos / cirugía
Día 2- Discurso / Dieta / Depresión / Importancia de las reuniones / Organización /
Planificación de lecciones de planificación y libros de imágenes
Día 3/4 Entrene a los fisioterapeutas / baile u otros en PD warrior u otro programa similar
Parte 2: Día 5/6 – Clínicas en Lima: Enseñe nuevamente 1-4 en forma abreviada.
Días 7/8 (después del domingo) Trujillo regional y Arequipa – 4 capacitadores (incluyendo fisio / habla / nutricionista) van a cada ciudad.
Es un borrador del plan, pero como la gente me lo ha pedido, me parece bueno compartirlo. Del mismo modo, si deseamos ayuda, necesitamos compartir un plan claro, incluso si es necesario ajustarlo.
Si conoces a alguien que pueda ayudar, los expertos de Parkinson pueden compartir. Que puedan ofrecerse a ser voluntarios o hacer incluso más que en el plan. DREAM soñar grande … y trabajar duro en el interum.
This is the link to to project fundraiser (no deleted as it was old). It is in development stage right now. I am trying to find patients and invite to meet regularly and looking for partners to work with too like the Parkinson’s association of PERU (who are super keen to work with us).
The aim is to find international and national volunteers and funding to come and teach/ demonstrate best practices in Parkinson’s disease treatment, disease education and exercise.
The project will also survey each new contact on their experiences with Parkinson’s in PERU. Below is a draft of the project plan but things will depend on survey’s and resources available.
Project Aims: Education for the disease of Parkinson’s in Peru
Part 1: Educate health professionals, physiotherapist, speech pathologist. Nurses and other professionals, like social workers, nutritionist, health Educators and younger/ selected suffers or family member able to help with education of others.
How? Invite foreigners or local experts to train the core group/ Interactive and practical training/ Quizzes/ teach a neighbour.
Day 1- Parkinson’s Disease in-depth : Dopamine/symptoms/Drugs vs Exercise/ myths/surgery
Day 2- Speech/ Diet/Depression/Importance of meetings/ Organisation /
Planning lesson planning and picture books
Day 3/4 Train physiotherapists / dance or others in PD warrior or other such program
Part 2: Day 5/6 – Lima Clinics: Teach 1-4 again in abbreviated form.
Days 7/8 (after Sunday off) Regional Trujillo and Arequipa – 4 trainers (including physio/speech/nutritionist) go to each city.
It is a draft plan but since people have asked I thought it good to share. Likewise if we want help we need to share a clear plan, even if it needs adjusting.
If you know anyone who could help – Parkinson’s experts then please share. Maybe they can offer to volunteer or do more than in the plan even. Lets DREAM big…..and work hard in the interim.
UPDATE; WE STILL HAVE THESE AIMS TO EDUCATE AND HAVE CONFERENCES BUT WE’RE DOING IT ON A SMALLER SCALE AND ON PAUSE BECAUSE OF CORONA