Skip to toolbar

En Español

Two events in 1 week: Dos Eventos en Espanol

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

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

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

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

Inscribirse:

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

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

Inscribirse aquí:

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

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

ENGLISH – TWO EVENTS THIS WEEK

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

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

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

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

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

Newsletters and their importance – Noticias en Español.

Welcome to my blog those who are new. It is nice to have you journeying with me. I hope you enjoy or learn something here.

This is a newsletter I wrote recently in Spanish. I won’t translate it all but basically I am promoting everything that is happening in Actívate, the Parkinson’s group I created. Well, not much has happened because of Lockdown but nonetheless little things should be celebrated.

I studied community development and one thing you learn is you need to share the successes and promote your group in an ongoing way. It is nice for the participants to get mentioned and of course upcoming events and opportunities for their involvement in research are advertised.

I have included also for the Spanish speakers. If you have questions I can answer them and gradually I will tell these stories too in English.

Newspaper Article: Getting Parkinson’s patients out of their homes

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”

https://diariocorreo.pe/edicion/arequipa/afectados-por-enfermedad-asumen-reto-se-superar-parkinson-933641/

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.

Nuevo sitio web en español New website in Spanish.

I have created a Spanish website so you’ll find English below the Spanish

¿Por qué este sitio web?

Cuando me diagnosticaron con la enfermedad de Parkinson aquí en Perú hace 6 años, tuve problemas para encontrar expertos en parkinson, información para educarme y encontrar otras personas con quienes poder asociarme, intercanbiar información y así no estar sola.’

Es muy importante no sentirnos aislados, esa es la razón número uno por la que las personas con parkinsons empeoran.

Por eso después de años buscando todo tipo de información, tengo algunos contactos de confianza y quiero compartir con ustedes, tristemente he escuchado historias de gente que se aprovechan de las personas con parkinson, ofreciendo tratamientos que realmente no sirven y muy por el contrario solo los empeoran.

Por eso las recomendaciones aquí tienen que venir de personas de confianza. Es importante resaltar que está página no tiene fines comerciales, no vendemos productos. Lo que buscamos es promover un espacio donde podamos compartir información útil, y de confianza para todos los pacientes y familiares con Parkinson, un espacio para no sentirnos solos.

Los Menús son:

Directorio de Parkinson en Perú – Eso sería profesionales de Parkinsons quienes están o estén preparándose para ser especialistas de Parkinson. No solo es doctores – puede ser: Dietéticas, logopeda, fisioteraputa, y asociaciónes de  Parkinson en varios lugares del Perú.

Educarse (sobre el Parkinson) – Vamos a dividir enlaces por tema y también incluir Manuales sobre el Parkinson. Todos los recursos serán en español pero a veces son escritos en otro país por eso tengan esto en cuenta que a veces los sistemas de salud son diferentes. Tendremos enlaces para profesionales también para ayudarlos a estudiar.

Noticias – Compartiremos fotos e historias de eventos de Parkinsons en Perú o peruanos afuera del país.

Inscribirse– Estamos animando a todos a inscribirse a nuestra web, para escuchar noticias nuevas y futuros eventos.

Gracias por tomar el tiempo para leer y educarse sobre la enfermedad de Parkinson.

Christine Jeyachandran

Why this website?

When I was diagnosed with Parkinson’s disease here in Peru 6 years ago, I had trouble finding parkinson’s experts, information to educate myself, and finding other people with whom to associate, exchange information, and to meet with.

It is very important not to feel “isolated”, this can be the number one reason people with parkinsons get worse.

So after years looking for all kinds of information, I have some trustworthy contacts and I want to share with you, sadly I have heard stories of people who take advantage of people with Parkinson’s, offering treatments that really do not work and quite the contrary only the get worse.

So the recommendations here have to come from trusted people. It is important to note that this page is not for commercial purposes, we do not sell products. What we seek is to promote a space where we can share useful and trustworthy information for all Parkinson’s patients and families, a space so that we do not feel alone.

The Menus are:

Parkinson’s Directory in Peru – That would be Parkinsons professionals who are or are preparing to become Parkinson’s specialists. It is not only doctors – it can be: Dietetics, speech therapist, physiotherapist, and Parkinson’s associations in various places in Peru.

Educate Yourself (About Parkinson’s) – Let’s break down links by topic and also include Parkinson’s Manuals. All the resources will be in Spanish but sometimes they are written in another country, so keep this in mind that sometimes the health systems are different. We will have links for professionals also to help them study.

News – We will share photos and stories of Parkinsons events in Peru or Peruvians outside the country.

Register – We are encouraging everyone to register on our website, to hear new news and future events. Thank you for taking the time to read and educate yourself on Parkinson’s disease.

Christine Jeyachandran

Dr Karlo Lizarraga’s Visit to Arequipa – Visita de Dr Lizarraga

El español está abajo los fotos.

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. 

All photo credits go to FAVI BEJAR Fotografia http://favibejar.com/

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.

Todos los créditos fotográficos son gracias a FAVI BEJAR Fotografia. http://favibejar.com/


Enviar comentarios
Historial
Guardadas
Comunidad

Ambassador for the World Parkinson’s Congress 2022 – Embajadora de Congreso Mundial de Parkinson.

I am honoured to be chosen as an Ambassador for the World Parkinson’s Congress in June 2022 in Barcelona.

What is a WPC Ambassador you ask?

They are people who have Parkinson’s who are passionate about living well with Parkinson’s and help others do the same. They have attended a congress, I did last year in June in Japan, and they are so excited about the next one and would have booked their tickets already if they could.

“Ambassadors will work as part of our outreach team as we plan for the WPC 2022 in Barcelona, Spain from June 7 – 10, 2022. Whether giving talks at local support groups, writing articles in papers or on blogs, making themselves available to speak about the WPC to communities wanting to learn more about why to attend a World Parkinson Congress, they are invaluable members of the WPC team and we are thrilled to have them on board” WPC website.

It is very exciting and I am looking forward to working with the team of 15 others. I am the only ambassador south of Mexico so I have a lot of ground to cover. The joy of this conference is that it will be in Spanish too so that means that it is important to get the South Americans along while it is in their language.

ESPAÑOL

Me siento honrada de ser elegida embajadora del Congreso Mundial de Parkinson de junio del 2022 en Barcelona.

¿Qué es un/a embajador/a de Congreso Mundial de Parkinson (WPC)?

Son personas con Parkinson apasionadas por vivir bien con Parkinson y ayudar a otros a hacer lo mismo. Han asistido a un congreso, lo hice el año pasado en junio en Japón, y están muy entusiasmados con el próximo y ya habían reservado sus vuelos si pudieran.

“Los embajadores trabajarán como parte de nuestro equipo de promotores y planeamos el WPC 2022 en Barcelona, ​​España, del 7 al 10 de junio de 2022. Ayudaran dando charlas en grupos de apoyo locales, escribiendo artículos en periódicos o blogs, poniéndose a disposición para hablar sobre el WPC a las comunidades que desean aprender más sobre por qué asistir a un Congreso Mundial de Parkinson, son miembros invaluables del equipo de WPC y estamos encantados de tenerlos a bordo” del sitio web de WPC.

Estoy muy emocionada y espero trabajar con el equipo de los 15. Soy el única embajadora al sur de México, así que tengo mucho terreno por recorrer. La alegría de esta conferencia es que también será en español, lo que significa que es importante llevar a los sudamericanos mientras están en su idioma.

 Estoy disponible para hablar en reuniones.  ¿Quien va con conmigo a Barcelona?

https://wpc2022.org/page/2022ParkinAmb?fbclid=IwAR2EFTsD92iMBNv5AofTy23kOsY3PUtPiqpPIoinAX3KOvI5h5zk56RnwLY

En Periódico Online – Encuentro

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/

In the Newspaper – En el periodico

En Español abajo.

What a surprise? I was interviewed for a newspaper and today when I found out it was published we rushed to buy it, looked through all of it and started to think it must have been yesterdays paper. No, it was a full backpage. Amazing!

So thankful for the connections I am making to get this far. A person with Parkinson’s introduced me to the journalist and because she already knew of his struggle she was already sold on helping us out and wants to continue to do so.

By chance I ran into the family at the shops just now and was able to say thank you in person. Juan reiterated that Nelly was willing to write more stories. To which I replied “Yes! I am hoping your story will be next as I know you are a going to improve a lot right?” He smiled sheepishly. Let’s hope and pray! He is a great guy with a lovely family.

I have various friends helping with editing and other tasks which helps so much. It takes a village really. Thank you Josue, Ines, Noelia, Leydey, Yoselyn y David, and my kids. Hoping for more helpers soon. Any volunteers

The article is in Spanish but it explains about starting the Parkinson Association in my city, my exercise and the video I made which documents my gymnastics program which was shortlisted for the #wpc19 video competition.

En Español

¿Qué sorpresa? Fui entrevistado para un periódico hoy, cuando descubrí que estaba publicado, nos apresuramos a comprarlo. Lo revisamos todo y comenzamos a pensar que debía haber sido el periodico de ayer. Pero era una página detrás. ¡Increíble!

Estoy muy agradecido por las conexiones que me ayudaron a educar sobre la enfermedad de parkinson. Juan, un amigo con Parkinson, que me presentó al periodista, Nelly. Porque ella ya subia de la enfermedad de Juan, ya estaba convencida de ayudarnos y quiere continuar haciéndolo.

Por casualidad me encontré con Juan y su familia en las tiendas el mismo dia y pude agradecerles en persona. Juan reiteró que Nelly estaba dispuesta a escribir más historias. A lo que respondí: “¡Sí! Espero que tu historia sea la próxima, ya que sé que vas a mejorar mucho, ¿Verdad?” Él sonrió tímidamente. ¡Estoy orando! Son una linda familia.

Tengo varios amigos que ayudan con la edición y otras tareas que ayudan mucho. Realmente se necesita un pueblo. Gracias a Josue, Ines, Noelia, Leydey, Yoselyn, David y mis hijos. Esperando más ayudantes pronto.¿Quienes quiere involucrarse?

Los trabajos sean administrativo, diseño gráfico, buscando aliados en hospitales y lugar para clases etc.

El artículo está en español, pero explica acerca de cómo iniciar la Asociación Parkinson en mi ciudad, mi ejercicio y el video que hice que documenta mi programa de gimnasia que fue seleccionado para la competencia de videos en el congreso mundial de parkinson #wpc19.

https://diariocorreo.pe/edicion/arequipa/como-superar-el-parkinson-consejos-de-una-paciente-que-vencio-las-dificultades-928439/?ref=dcr

Finalist of Video Competition. FINALISTA DE COMPETENCIA DE VIDEOS

https://www.youtube.com/watch?v=h1B6kUgN6WQ&t=6s

My video has been chosen as one of the 12 finalists for the World Parkinson’s Congress. I am elated. There are 2 winners. One chosen by judges and one by people’s choice by popular vote. So I have to encourage you all to vote online in the link (voting has now finished) and encourage others to vote too. You need use your email address.

Christine Allison Jeyachandran​- Mi video sobre aprendiendo parada manos/ gimnasia está concursando en el congreso mundial de Parkinson, entren en el link y voten por mi! 😁 He sido elijo en los finalistas (12)…. Muy Feliz!!!!!!!!!!!!!! Los intrusiones son en ingles pero dice, votar una vez no más. El nombre de mi video es Hand Standing for Parkinson’s Disease by Christine Jeyachandran. Pon su nombre apellido y email y buscar mi video para votar (Ya termino votacion). Gracias y animar a otros votar. Compartir por favor