P de Parkinson – Spanish Blog

English is below- “Spanish blog”

https://pdeparkinson.blogspot.com/

Este es un blog en espanol que vale la pena seguir. Este blog es escrito por Anna Gómez Grau:

Con P de Parkinson intenta ser un blog para aquellas mujeres que deseen expresar sus sentimientos y su vida a raíz del parkinson. Esa dualidad de lo que sentimos ser y lo que somos, entre nuestro deseo y nuestra realidad.

Mirarte al espejo y ver como tu expresión va cambiando. Pequeños signos que pasan desapercibidos para los demás y son tan físicos para nosotras.

Vivir con esta enfermedad no es fácil, con ninguna lo es, y cuando te dicen que bien estás, que bien te veo, yo me cambiaría por ellos en ese momento.

Queremos crear conciencia sobre el Parkinson de Inicio Temprano y la mujer, para que los síntomas se valoren diferente al de las personas mayores diagnósticada de Parkinson .

Se necesita más investigación sobre el impacto del Parkinson en los jóvenes y en la mujer.

“Y mientras intento silenciar mi condición de mujer que padece una enfermedad (que no es lo mismo que de mujer enferma) me gustaría gritarle al mundo que ¡tengo Parkinson! para que el mundo no pierda la paciencia por mi falta de agilidad, deje de mirarme como a un bicho raro y empatice conmigo. Y que empatice de verdad, no como un acto de misericordia, si no desde la igualdad y la solidaridad.

Y de esta manera, con nuestros escritos en este blog, siento que estamos gritándole al mundo: ¡Miradnos! ¡Estamos aquí! ¡Y no pasa nada! Por ello, pienso que sería una lástima que “Con P de Parkinson” se limite a ser un foro de mujeres con Parkinson que nos leemos unas a otras. Fuera de aquí existen muchas mujeres y hombres que no padecen la enfermedad de Parkinson y que se merecen saber más de ella. Y de nosotras. Y nosotras nos lo merecemos también.” Anna Gómez Grau

https://pdeparkinson.blogspot.com/

This is a guest post form a Spanish Blogger which I have translated to English here so you can hear why she blogs. It is a great encouragement to Spanish speaking women with PD and I'll be sharing it with my community.

Anna Gómez Grau:
With P for Parkinson's is a Blog - It is a blog for those women who want to express their feelings and their life as a result of Parkinson's.

That duality of what we feel we are and what we are, between our desire and our reality.

Look in the mirror and see how your expression is changing. Small signs that go unnoticed by others and are so physical for us.

Living with this disease is not easy, not with any disease, and when they tell you that you seem fine, that you look well, I would change places with them at that moment.

We want to raise awareness about Early Onset Parkinson's and women, so that the symptoms are assessed differently from those of older people diagnosed with Parkinson's.

More research is needed on the impact of Parkinson's on young people and women.
And while I try to silence my condition as a woman suffering from a disease (which is not the same as a sick woman), I would like to shout to the world that I have Parkinson's, so that the world does not lose patience due to my lack of agility. Stop looking at me as a freak and empathize with me, and really empathize, not as an act of mercy, it is about equality and solidarity.

And in this way, by writing on this blog, I feel like we are yelling to the world: Look at us! We are here! And nothing happens! Therefore, I think it would be a shame if "With P for Parkinson's" is limited to being a forum for women with Parkinson's that we read to each other. Outside of here there are many women and men who do not suffer from Parkinson's disease and who deserve to know more about it. And of us. And we deserve it too. 
Anna Gómez Grau
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Tough year for PD Community In Peru

Español Abajo: Año difícil para la comunidad de EP en Perú

It has been a tough year in Peru for people with Parkinson’s, I guess everywhere really. I have been so busy doing things by distance that I haven’t had time to write the really deep blog posts that are mulling around in my head. I’ve even started some but they need more work.

So when Parkinson’s life Magazine asked me to reflect on the year and how the community was doing and our resolutions for the new year I got straight onto Whatapp. I asked my community what it was like for them and some commented, some filled in a mini survey and and some I talk to.

It also gave me a chance to think about the aims I have for next year and re-reading them again today made me think I better do x,y and Z to get these achieved.

So here’s the article with my comments along with those from others around the world.

https://parkinsonslife.eu/new-years-resolutions-parkinsons-community/

They didn’t use the photo I sent in of representatives of my community, Susan (physiotherapist and Ramiro – PWP) so here it is. They’ve been a great encouragement to me this year so thank you Ramiro and Susan.

Happy New Year everyone and what is your new years resolution?


Español
Año difícil para la comunidad de EP en Perú

Ha sido un año difícil en Perú para las personas con Parkinson, supongo que en todas partes. He estado tan ocupado haciendo cosas a distancia que no he tenido tiempo de escribir los blogs realmente profundos que están dando vueltas en mi cabeza, algunos incluso están empezados pero necesitan trabajar.

Entonces, cuando la revista Life de Parkinson me pidió que reflexionara sobre el año y cómo le estaba yendo a la comunidad y nuestras resoluciones para el nuevo año me hice pensar. Fui directamente a whatapp y le pregunté a mi comunidad cómo era para ellos, algunos comentaron, otros completaron una mini encuesta y algunos hablábamos, así que he escuchado cómo les está yendo.

También me dio la oportunidad de pensar en los objetivos que tengo para el próximo año y volver a leerlos hoy me hizo pensar que sería mejor hacer x, y y Z para conseguirlos.

Así que hoy salió la edición en la que aparecen mis comentarios junto con otros de otros lados del mundo.

https://parkinsonslife.eu/new-years-resolutions-parkinsons-community/

Tristemente no usaron la foto que envié con  los representantes de mi comunidad conmigo, Susan, fisioterapeuta y Ramiro - persona con Parkinson), así que aquí está. Hicieron un gran esfuerzo para venir y tomarse una foto y han sido un gran animadores para mí este año, así que gracias Ramiro y Susan.

Feliz año nuevo a todos y ¿cuál es su resolución de año nuevo?

My video wins popular Competition at University of NSW

I entered a video competition at UNSW School of Population Health and I didn’t win it but they had a popularity competition on facebook and so I announced it on twitter and social media and it won the popular vote.

Thank-you for the votes for the video. Link to video.
https://youtu.be/Tlb3OQxM8bA

I am always trying to get Parkinson’s in the media, get people understanding and potentially inspired to help the community in some way.

20% of Aussies affected by Parkinson’s are under 50 at diagnosis, like me. Parkinson’s is advancing all over the world! It’s prevalence has doubled in the last 25 years and it will double again in the next 20 years unless we act (Dorsey et al, 2018).

I hope young researchers and undergraduates will consider Parkinson’s disease as a research topic. We need to end Parkinson’s Disease – an insidious and disabling global pandemic! 

Frequently Asked Questions

Welcome to my blog those who are new. People ask me a lot of questions but these are the ones that come up over and over again so this is a quick blog answering 5 questions.

  1. Were you a gymnast as a kid? Is that why you can do a handstand? I never did gymnastics as a kid but I did do handstands in the playground.
  1. Did your coach come back? (you have to watch Handstand for Parkinson’s to understand this question) My coach did come back after leaving me and it was pretty quick, as soon as I finished editing the video. It was more like a break but it was devastating at the time.
  1. Why did you do gymnastics? I had been watching my twins do gymnastics since they were 4 so the gymnastics facility was a location I knew well and the coach was my girls coach which made it easier for me to ask him to train me as I knew he had an adult class. There are no Parkinson’s disease physiotherapists or exercise classes where I live, so I was pretty desperate to find something to help my body move better. I knew that I needed accountability and a tough coach to push me along.  I didn’t know it was going to work so well at all but retrospectively one sees that balance, coordination and strength are features of gymnastics so it make sense. I do mainly physical preparation rather than tricks and it took 9 months before I tried a handstand.
  1. You must train every day for long periods of time? I started off with 45 minutes, 3 times a week and then I raised it to an hour and eventually 3 times a week, 2 hours a day.  Often I’d do an extra low key session on Saturdays. It is a solid commitment I think it’s doable and worth it.
  1.  Does your coach know anything about Parkinson’s disease? Is he trained? My coach didn’t know much about Parkinson’s disease, so I explained the basics. But he did have a friend who had had the disease and who he told me stories about. I gave him some things to read and he might have investigated further. I’d done a PD warrior Course as a patient in Australia so that gave me some good principles but the coach really did what he usually does with gymnasts making adjustments for sore knees etc and lowered his expectations. He seemed to have a good eye for what needed work.

If you have other questions ask in the comments or on twitter: https://twitter.com/christinejeya

My youtube channel: https://www.youtube.com/c/ChristineJeya

Featured in Podcast: When Life Gives you Parkinson’s

Thanks to Larry Gifford for interviewing me on his popular podcast When Life Gives you Parkinson’s. Follow the link and please share it.

https://omny.fm/shows/when-life-gives-you/even-patients-can-push-things-along?t=0s

“In this episode of When Life Gives You Parkinson’s, host Larry Gifford introduces you to Parkinson’s advocate Christine Jeyachandran. Christine is an Australian living in Peru with her family. They met in Japan at the World Parkinson Congress where she was a finalist in the video competition. Her video tracked her journey to learn gymnastics with PD and ultimately achieve a handstand. Now Christine brings hope, urgency and education to her Parkinson’s advocacy through her website and videos at www.handstandforparkinsons.com

Please take the time to listen. Several have said they appreciated it.

Apologies the picture isn’t a link

Video Competition Votes Needed

PLEASE VOTE for my VIDEO:
https://sway.office.com/dn1Pp6ap2ir0Hz3E?ref=Facebook

Just a quick note to request you vote for my video in a little university video I’m studying public Health at Uni of NSW and answered in one minute: “What does the Decolonisation of Global Health mean to you?”

It is actually quite a complicated theme. The other videos are great – very academic. Mine is different and narrowly focused about #Parkinsons. I just answered in from a Parkinson’s in Peru perspective. I know the other answers were more complete but with 60 seconds I just had to keep it simple.

My aim is to bring more awareness about Parkinson’s disease Peru and find funding for a small project.

So here is the link – please vote and hopefully if it wins – we get more media, opporunties for this great need. Let’s get the word out there about Parkinson’s Disease.

Cheers Christine

PLEASE VOTE for my VIDEO. People’s Choice Competition. Voting will close at Midnight AEDT on 29th November 2020.

PLEASE VOTE for my VIDEO:
https://sway.office.com/dn1Pp6ap2ir0Hz3E?ref=Facebook

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.

Little Toe! Big Problem

It is amazing how one little thing can set you back
Almost 6 weeks ago I broke my little toe. I was doing gymnastics (at home) and one of the children moved a chair just a millimeter to close and my left leg was kicking up and SNAP! It hit the edge of the chair.

Within minutes I realized that there was no way I could walk so got an X-ray at a local clinic as my foot turned blue. Thankfully I had visited a doctor a few weeks prior and he gave me a diagnosis by WhatApp but I visited him the next day to confirm it was indeed fractured. All he did was put a small tape of my foot and said it should be better in 3 weeks.

So I hobbled around but inactivity made my body stiff so I exercised as best I could. I started to get really frustrated because after 3 or 4 weeks. I was not better and it didn’t feel like it was improving. Exercise is a natural antidepressant and I wasn’t getting enough. I started to feel down.

Then things got worse. I was walking strangely to compensate for my foot and I somehow threw my shoulder. I could barely move my arm so I rang a friend who is a physiotherapist and she turned out to be great at find and found the pressure points to release the muscles. She gave me exercises so my shoulder could regain movement and she suggested I try to walk normally. The Parkinson’s body forgets very quickly what is normal so with thought and intention I started to walk better. This week I could even put on a pair of shoes and walked to the mall. It is still not 100% but it’s on the mend and I can do most things now.

The toe is such a small part of my body and it affected my whole body and outlook. It reminds me of this from the Bible about the tongue:

“The tongue is a small part of the body, but it makes great boasts.
Consider what a great forest is set on fire by a small spark.
The tongue also is a fire, a world of evil among the parts of the body.
It corrupts the whole body, sets the whole course of one’s life on fire,
and is itself set on fire by hell”.
James 3:5-6

Whether you believe in hell or not we all know the power that hash words can have.
My broken toe had a chain of effects that affected everything.
The toe broke:
which led to stiffness in my body
which led to – frustration and sadness for the lost opportunities
which led to – walking with poor form
which led to – a hurt shoulder /arm
which led to – more frustration and sadness
BUT then I asked for help – which led me to fix my shoulder
which led me to – try to walk normally
Which led me to – exercise again
Which let me to – get a buzz from exercise success again
Which made me happy and ready to launch my comeback

Is a small thing In your life leading you into a downward spiral?.

Every situation is different and we sometimes can’t control the negative things that happen but we can learn from our own and other people’s experiences. .
I’m not sure I would have done anything different or could have. Sometimes help from others doesn’t work but in this case it did and it’s always good to have in mind that there is a light at the end of the tunnel.

I hope this reflection helps you. It’s not all roses and rainbows as now I’m pushing myself physically and my muscles are sore but I’m on an upward upward trajectory.

PS. If you are curious about the connection between exercise and mental health there is plenty of information about there. Here is a link to one video:

Dr Simon Rosenbaum https://youtu.be/_6JIXnwW03Q

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.

Joy – A Poem

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