En Español

RAYO DE ESPERANZA ganó el concurso de vídeos elegidos por el público en el Congreso Mundial de Parkinson

THIS ARTICLE APPEAR IN ENGLISH BELOW:

El vídeo de Christine Jeyachandran “Ray of Hope” (“Rayo de esperanza”) ganó el concurso de vídeos elegidos por el público en el Congreso Mundial de Parkinson celebrado a principios de julio.

El vídeo fue presentado en la ceremonia de apertura del Congreso Mundial de Parkinson, ante miles de personas en Barcelona (España). El vídeo cuenta la historia de Ray y Ana María, una pareja Irlandesa-Peruana que vive en Perú y se enfrenta al diagnóstico de Parkinson y al estigma asociado a la enfermedad.

Christine, que padece Parkinson de aparición temprana desde los 37 años, dirigió y editó Ray of Hope. “Ray y Ana María encontraron mi vídeo Handstand for Parkinson’s, que fue finalista en el concurso de vídeos WPC en 2019, en Japón.  Decidimos conocernos ya que ambos vivíamos en Perú y nos hicimos amigos.

Christine decidió hacer un documental para crear conciencia sobre el Parkinson y entrevistó a 5 personas incluyendo a Ray. No ha podido completar este proyecto, pero quedó impresionada por la elocuencia de Ray y decidió hacer “Ray of Hope” (Rayo de esperanza) como cortometraje para el concurso de vídeos del Congreso de 2023.

Ray y Ana María participan en un grupo de apoyo en Lima para personas afectadas por el Parkinson (pacientes y cuidadores). Muchos enfermos de Parkinson se enfrentan a problemas físicos, así también como la depresión y el aislamiento, que agravan su deterioro. Muchos carecen de acceso a información y recursos.

Christine quería que Ray y Ana María asistieran al Congreso para conseguir más recursos para ayudar a las personas con Parkinson de Perú. Puso el vídeo a nombre de Ray, para que si por casualidad ganaba, el premio ayudara a Ray a ir a la conferencia. Christine ya estaba inscrita para asistir y hablar, pero Ray recibió una beca de viaje y apoyo del WPC para ayudarles a llegar hasta allí. Están muy agradecidos.

El vídeo tiene visitas y votos de Perú, Australia, Irlanda, de América Latina y de todo el mundo. Christine y los protagonistas quieren dar las gracias a todos los que han votado y les han ayudado a ganar el premio del público.

Christine dice: “Ray estaba encantado con la victoria. Viajó a España para recibir el premio y su hermano vino desde Irlanda para verle allí”.

Aunque el video de Christine no ganó en 2019, se sintió tan inspirada por el Congreso que creó un grupo de apoyo en su comunidad del sur de Perú, donde vivía en ese momento, y cofundó la Alianza de habla hispana que abogan por una mejor atención e investigación, y fue elegida embajadora del WPC. Ella ve que el congreso ha entusiasmado a Ana María y a Ray.

Ray: ¡Conté mi historia porque quería liberarme! Me sentía oprimido por el Parkinson. Al abrirme al mundo y compartir mi historia creo que me ayudé a mí mismo y a otros a ver la esperanza más allá de la enfermedad.

Christine: “Los comentarios y las reacciones han sido alentadores y esperamos que Ray of Hope desafíe el estigma asociado al Parkinson. Algunos dicen que en el Oeste no existe el estigma, pero ¿por qué tanta gente oculta su diagnóstico? 

Por favor, comparta este vídeo para ayudar a la gente a entender el Parkinson, pero también tenga en cuenta que cada persona experimenta el Parkinson de manera diferente.

https://youtu.be/moq1JRD4qPs

 

I have a dream ….for Club Dopamine!

A research survey found a significant number of Latin American (Llibre Guerra et al; 2022) people had Parkinson’s Disease symptoms but had NEVER  been diagnosed and not had medical or neurological attention.

The study didn’t ask why but we can imagine some don’t know what Parkinson’s is and others or those same people hide because of stigma and discrimination.  They become isolated which worsens their disability and increases immobility.

Parkinson’s disease has no CURE.

Raising awareness about Parkinson’s is crucial to prevent late diagnosis and start early physiotherapy/exercise.

We must explain that PD is not a curse, your fault or something to be ashamed of.

We are taking action to prevent discrimination and isolation and encourage holistic treatment including exercise which can help symptoms considerably.

We  need  help!

I have a small project I’d like to find funding for that aims to empower people with Parkinson’s (PWP) to thrive:

– to be understood,

– to stop isolation,

– and to get treatment!

Over the last few years advocates have emerged who are willing to share their stories about living with Parkinson’s in Peru. The daily struggles,  the small triumphs and the ongoing battle inspire us to continue. My story has inspired people to exercise to improve their Parkinson’s symptoms and Dorys’ story about the family’s sacrifice has had immense international feedback.

I just published Ray’s story , and it is turning heads and breaking stigma. In 3 weeks it has had 1000 views and lovely comments.  All this without  marketing, imagine what we could do if we had a marketing budget.

Stories connect us. Stories about family. The love seeps into our hearts: strained voices, biting of lips, and love in a look. We have these treasures(interviews) in our hands as I filmed them with a professional in 2021  but they need to be edited and marketed for maximum exposure.

I can’t take this on. I’d like to see it created into a documentary for a film festival. It will give an editor a wonderful creative opportunity. They’re in Spanish but modern technology means this isn’t a barrier. I don’t know how it is going to get made but I have faith it will be made and will be a powerful approach to breaking down stigma but not in an educational boring way…

Watch the first story which happens to be in English and catch a bit of the essence of this project.

I have a dream….but I have had many dreams and I know I often get above and beyond what I expect. It is happening in my life right now …but that’s another story.

I dream not for myself but for those who message me in pain in the middle  of the night, Sara has no neurologist, no exercise coach, she can’t sleep  because of the pain.

For Sara and many more… For Club Dopamine!  May this project get the funding or passionate philanthropist it needs.

Llibre-Guerra JJ, Prina M, Sosa AL, Acosta D, Jimenez-Velazquez IZ, Guerra M, et al. Prevalence of parkinsonism and Parkinson disease in urban and rural populations from Latin America: A community based study. The Lancet Regional Health – Americas. 2022 Mar;7:100136.

Ray’s story:

Christine Jeyachandran’s profile:

Keep in touch links

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In SPANISH: Llenar este enlace para comunicaion en espanol y sobre investigation

 
Christine Jeyachandran ‘s Profile
Christine Jeyachandran: 9 years ago at age 37, Christine was diagnosed with Parkinson’s disease in Peru where she lived until recently. It started with a slight tremble, weak fingers and led to left foot dragging and difficulty walking without medication. Gymnastics has changed her life completely and empowered her physically and mentally. Her video Handstand for Parkinson’s was a finalist at the World Parkinson Congress.

Finalist for video Competition 5100+ views
She regained range of movement, balance, flexibility, coordination, and she’s stronger than ever. And her video Before and After shows a huge contrast in how it has changed the way she moves.
In April 2020, Christine edited a video: What are the benefits of exercise?. This shows the amazing stories of 13 people with Parkinson’s from around the World who swear by and implore people with Parkinson’s to exercise with determination and intensity, an apt message during COVID19. Parkinson’s disease never takes a day off.  Video thumbnail: What are the Benefits of Exercise? Parkinson’s secrets to living successfully. Video I of II
Christine herself had to “overcome apathy, doubts, fatigue, and fear” in training gymnastics so she wanted to help others understand the benefits went beyond her story and are worth the effort. This video comes with a sequel discussing “What keeps you motivated” as we know motivation is a big challenge for those with Parkinson’s too! This project was featured in Parkinson’s Life, online magazine.
The video – Would you sell your house to save your mother? Has been had amazing feedback (see poster below) and exposure and was a top 5 in a popular vote for the Focus on Ability Video Competition last year. It has over 44 amazing comments just on their site and many more through social media. It challenges the world to see the needs within the Parkinson’s Latino community.   

Finalist in Focus on Ability Film Festival
Christine is now A Co-Principal Investigator, researching the needs of people with Parkinson’s in a Research Project funded by Fox Foundation Parkinson’s Disease in Latin America: Learning from Underrepresented Populations  
   
   
Public Speaking
Workshop panellist / Interview Mainstage, Reachout, EU, Sydney University 
Panellist, NSW Parkinson’s Workshop 
Pitch finalist at University of New South Wales, NEW WAVE
Speaker, Diva’s Luncheon – Online
Panelist at events Muhammad Ali Parkinson Center and Spanish Federación de Parkinson
Interview, Two Mikes Podcast, Christine Jeyachandran: Making a difference in South America
Panelist on webinars, Paso a Paso Muhammad Ali Parkinson Center (3 occasion)
Panellist Sustain our abilities Webinar 
TV Interview TV Peru Sin Barreras
Interview, When Life Gives you Parkinson’s Podcast: Even Patients can Push things along 
Panellist and organiser, LSVT introduction to LSVT webinar in Spanish
Speaker Insight into Parkinson’s Parkinson’s Conference online 
Interview Parkinson’s Road Podcast

In the Media
PMD Alliance Blog Newsletter, Christine’s Story – Parkinson’s is not a punishment from God
Parkinson’s Life Magazine Article – Three inspiring film makers
Parkinson’s News Today Peruvian Family Sell Their Home to Afford Mother’s DBS 
Parkinson’s Life Magazine New Years Resolutions Parkinson’s Community
Parkinson’s Life magazine Benefits of Exercise Parkinson’s Video Project
Diario Correo Afectados por enfermedad
Encuentro La Gimnasia artística como terapia
Diario Correo Como Superar
European Parkinson’s Disease Association YOPD Christine Jeyachandran
 

Would you sell your house to save you mother?

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)

Please use these hashtags on social media:

#SellHouseSaveMother, #ParkinsonsDisease, #ParkinsonPeru, #NoMoreSuffering

The video is also available on youtube fully in Spanish.  

Alliance of Parkinson’s for Spanish speakers

Parkinson’s Disease is severely disabling in parts of the Spanish speaking world because of late diagnosis and poor treatment. Parkinson’s robs one ability to walk, talk, eat and smile. Some of this suffering is preventable.

Parkinson’s Disease is a growing pandemic with 7-10 million worldwide and it’s prevalence has doubled in the last 25 years and will double again in the next  20 years if we don’t find a fight for change. 2%  of people over 60 years of age but in Australia 20% of those diagnosed are under 50. Statistics don’t exist in many Spanish speaking countries. The whole family is affected economically and emotionally.  

In the west treatment exists. Parkinson’s disease can still be disabling and painful but in Spanish speaking countries treatment can be substantially lower (each country varies). I’m a founder of an iniative called Alianza IberoAmerican de Parkinson. This initiative is needed because:

  • Patient’s lack self management and lifestyle and trustworthy disease education would help address – false information (cure scams), social stigmas, dangers of isolation and inactivity and depression that lead to rapid disease advancement.
  • Many countries don’t have exercise and multidisciplinary programs that help prevent progression and advocacy and awareness raising is needed for this
  • and more health professionals need training in Parkinson’s disease. 

The Idea

The idea is to provide accessibility to Parkinson’s resources to patients, families, health professionals and associations. In turn we can unite for training opportunities across Iberoamerica (The Americas and other Spanish speaking locations). This will strengthen capacities to prevent disease progression, raise consciousness and educate professionals better in Parkinsons in Spanish and ultimately create advocacy for health service improvement including exercise and other key multidisciplinary programs. 

Such an alliance of support has never been done in Spanish. Everyone has been working in silos often reinventing the wheel. With COVID forcing leaders like cofounder Sonia Elizabeth and I  online as we cannot hold in-person meetings. The demographic is older and  some have struggle to adapt to zoom meetings but our community leaders, health professionals and associations are now online, zooming and doing webinars and we realised that we are closer than we thought and can work together.  

Our approach is unique as we’re not rushing to create new resources, we’re bringing together what already exists with the help of the World Parkinson’s Congress, who is collating resources in English. Our work will be to have such a directory in Spanish. International health associations exist for professionals but patient friendly resources will be prioritised. 

The Project has grabbed the attention of the target population in the Parkinson’s community. Three big associations are eager for us to share their Spanish resources. Over 10 countries are represented so far including associations, advocates and professionals. We surveyed their thoughts concerning the needs of their group and their commitment to help and resources they have. This has determined our aims. 

We are doing education webinars in partnership with others and next is with the Mohammad Ali Parkinson’s Foundation and the Federacion Espanola of Parkinson. The comments we are receiving show the difference we’re making in our target population and the ageement they have to see this succeed.

The potential

 “Scaling up means expanding, adapting and sustaining successful policies, programs, and projects in different places over time to reach a greater number of people”(Hartmann and Linn, 2008). This exactly the aim of this initiative – Our goal  is to increase the quantity, quality and accessibility  of resources available concerning Parkinson’s disease in Spanish to improve the quality of lives of people with Parkinsons throughout the Spanish speaking community.

Our strategies for Scaling Social impact include expanding our network of affiliated organisations connected by the shared goals and activities to disseminate a directory of resources, promote courses for professionals, and raise awareness together (online, printable, videos and webinars),

Our business plan focuses on these aims and encourages advocacy for better services and policies concerning Parkinson’s treatment. Ultimately we’d like to evaluate lessons learnt in policy and service initiatives and advocacy to create  context specific reviews that could guide further efforts. 

Future investment would help:

Currently we have no funding for awareness campaigns, paid staff or a web platform. We have volunteers and willpower. Future investment could create a technological platform, help cover costs of awareness raising and ultimately we’d like to provide leadership training across our partners organisation to build up effective and discerning leaders who can disseminate resources and lead awareness raising campaigns in a latino context. 

So what next… let us know if you can help.

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