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May 2020

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

Not knowing what I was getting into in a good way!

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”
Robyn

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.