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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.

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

I’m going to climb a mountain – Fundraiser…or plan B?

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. 

Please donate to the link:

https://www.worldpdcoalition.org/donations/donate.asp?id=19358

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.

Christine Jeyachandran

Ambassador of the World Parkinson 2022

Who’s who in the Parkinson’s Community

I am constantly meeting people with Parkinson’s or others (in person or online) and I struggle to keep all the names and faces and facts together so when I was chatting with George – he asked me remember his Mum Sharon forever, to raise for awareness and hope for a cure. What a beautiful son? I won’t forget you George and Sharon. http://togetherforsharon.com

If you go to PDAvengers you’ll find a list of Who’s who in the Parkinson’s World. It isn’t everyone but it is a start!

https://www.pdavengers.com/

More Details from George:

My main focus in life today is Parkinson’s disease awareness and hope for a cure in my mother, Sharon Riff Ackerman’s memory.

My number one drive is togetherforsharon.com Sadly my mother, Sharon Riff Ackerman passed away on 1/1/2020 due to Parkinson’s Disease and dementia. My mother lived with Parkinson’s for decades, but it started to affect her daily activities in 2014. Up until then she was able to spend her favorite day of the week, Sunday, with us in the backyard, blowing bubbles with her grand kids, eating the best meals we could find, but only after a lively debate over where and what she wanted to eat. I miss those funny arguments. I also create videos on awareness to share for awareness. I also participated in podcasts, interviews, articles, television, radio, blogs and magazines to ensure my mothers story is never forgotten.

My family created togetherforsharon.com for Parkinson’s awareness & hope for a cure. I wanted a place where people could find information since I could not when I needed help desperately.

“My mother was the most caring, loving, positive person I know, and always put her family and friends first” Sharon’s son, George. 

Selfie Bands. The wristband band was created in January 2020 as a tribute to my mom, and as a way to raise awareness of Parkinson’s Disease, as we continue to hope for a cure, in memory of my mom Sharon Riff Ackerman. We have self-paid and send over 1,500 around the United States so those who want to help keep my mother’s memory alive, support awareness and hope for a cure. If you go to togetherforsharon.com we post many of the individuals’ pictures with the band selfie and share it with over 5,000 people on social media.

Fundraising We help fundraise and participate in events for the American Parkinson’s Disease Association (Optimism Walk), Parkinson’s Foundation (Moving Day) and Team Fox, the Michael J Fox Foundation. All donations that go to those organizations have a direct link in my mother’s memory at togetherforsharon.com

Partnerships  In only a few months I have met so many incredible people who are also going through the effects of this horrible disease and caretakers. I have partnered with organizations around the world and feature them on social media and togetherforsharon.com to reach more individuals around  the world together.

My main objective is to continue to raise awareness in my mother’s memory. I am confident helping awareness will lead to a cure someday. I need everyone’s help to sharing my mother’s story with one person, wear the band or just following togetherforsharon.com on social media or email me directly at [email protected]

CONCLUSION I am grateful for the opportunity to share my mother’s story. I am just the son of an incredible woman who deserved better then and if we had a cure, she would still be with us right now. She was too young to pass away and missed out on 15 years of   her life struggling with Parkinson’s disease. I miss her every second of every day. She was my best friend. Sharon’s son, George 

Sharon’s son,
George.

Video: Handstanding for Parkinson’s Disease!

I took a challenge to learn to handstand. It was lot of hard work to build up the muscles and prepare my body. I have made a short documentary about the process and the obstacles I faced. Please watch for the full story.

https://www.youtube.com/watch?v=h1B6kUgN6WQ&feature=share

I am raising funds to attend the World Parkinson’s Congress in Japan in June 2019 (funds will cover my flights/ accommodation/ registration) and in addition I am funding an education project for Parkinson’s sufferers in Peru. I’d like to raise awareness about Parkinson’s disease and the importance of exercise in preventing disease progression in Peru. Going to the Congress will help resource me for this purpose and on a personal level too. Please read my blog post  Peru and Parkinson’s Disease  for more information. It is a huge need and it breaks my heart to see people suffer unnecessarily. 

I challenge you to Handstand for Parkinson’s Disease too. 

1. Do a Handstand for Parkinson’s Disease (Read below first!) 

2. Post a Picture/ Video to facebook #handstandforparkinsonsdisease

3. Make a donation

https://www.gofundme.com/hand-stand-for-parkinson-disease

4. Nominate 2 Friends to “Handstand for Parkinson’s Disease” 

5. The challenge continues…. 

Handstanding: 
Please don’t try this if you don’t know how. Be responsible and if you want to learn, join an adult gymnastics class like I did. You would have until 1st of June to add your photo. 

I challenge you to make a donation to the cause on this page. Small or Large – as your heart leads you.

Thank-you for donating.

Why Blog?

Do people really want to listen to my ramblings about Parkinson’s Disease? Only time will tell but recently the #uniteforparkinsons campaign invited the disease suffers to make a video of their experience with Parkinson’s Disease.  I dragged my family out of bed on a Sunday morning and had them film me walking. Then we did some quick interviews and rushed to edit the video without too much thought.
The results were overwhelming:
Shared 26 times to my knowledge and I’ve received lots of encouraging comments from friends, acquaintances and strangers and lots of prayers….

A short version made by the #Uniteforparkinsons campaign: 
32 500 views on youtube
4500 views on facebook
80 shares on facebook

Parts of it was used in their main campaign too.

BUT most importantly (numbers mean less)….it has encouraged me to fight against the disease and encourage others in the process. I have been inspired to start a new fitness regime I’ll explain in another blog and although it is hard it is so good.

My conclusion is that if such a video can be so interesting to people and shared so widely and commented positively then I am sure this blog can be of some benefit to others especially with more thought and planning.

And if not, that is ok – it will keep me accountable in keeping myself fighting the disease.

Banner Photo: Favi Béjar Fotografía

Porque un Blog?

¿La gente realmente quiere escuchar mis ideas sobre la enfermedad de Parkinson? Solo el tiempo lo dirá, pero recientemente la campaña #uniteforparkinsons invitó a la gente que sufre de esta enfermedad a hacer un video sobre su experiencia con el Parkinson.

Saqué a mi familia de sus camas un domingo por la mañana y les hice que me grabaran caminando. Luego hicimos algunas entrevistas rápidas y corrimos a editar el video sin pensarlo demasiado.

Los resultados fueron una sorpresa:
800 + vistas en youtube
Más de 1500 visualizaciones en Facebook
Compartio 26 veces, que yo sepa, y recibí muchos comentarios alentadores de amigos, conocidos y no conocidos y muchas oraciones …

Una versión corta hecha por la campaña #Uniteforparkinsons:
32 500 visitas en youtube
4500 visitas en facebook
80 compartio en facebook

Algunas partes se usaron en su campaña principal también.

PERO lo más importante (los números significan menos) … me ha animado a luchar contra la enfermedad y animar a otros en el proceso. Me inspiré para comenzar un nuevo régimen de ejercicios que explicaré en otro blog y, aunque es difícil, es muy bueno.

Mi conclusión es que si un video de este tipo puede ser tan interesante para las personas y puede ser compartido y comentado positivamente, estoy segura de que este blog puede ser beneficioso para otros, especialmente con más reflexión y planificación.

Y si no, está bien, me siento responsable de seguir en mi lucha contra esta enfermedad.

Banner Foto: Favi Béjar Fotografía

Who am I? ¿Quien soy yo?

I wrote this when I started the blog in 2018, much has changed so read on in the blog.

I’m Christine. I’m Australian but I live in Peru with my family. I was diagnosed with Parkinson’s Disease four years ago when I was 37 – it was a bit of a shock! My left hand shakes so people think I’m nervous. Parkinson’s has damaged my ability to walk and my foot drags. My left arm/ hand also doesn’t move as it should and it trembles. I need to do exercise regularly, which is time consuming, to keep my body from degrenating.

Sometimes I feel sad. This disease has got me too young – I’m only 41. I feel a sense of loss of what I can’t do. I hope I can be there for my children when I’m older and be full of energy and strength.

Sometimes I’m tempted to question why I have Parkinson’s but in the end it doesn’t really matter why but I do know that God has a purpose for me in this. I know that I can be an encouragement to others. I have shared my story with many and serve God despite the hardships of life.

On that note, I am a bible believing Christian. Obviously I understand not everyone has the same beliefs as me but I cannot express myself most honestly without occasional reference to this. So I hope you keep reading nonetheless knowing that no offence is intended if you disagree. It is just “my story”.

PS- I write in Spanish too, whenever I can, because I live in Peru and I feel there are few resources here in Spanish about Parkinson’s disease. I hope to advance people’s understanding of the disease where I live.  

¿Quien soy yo?

Hola, soy Christine. Soy australiana pero vivo en Perú con mi familia. Hace cuatro años me diagnosticaron la enfermedad de Parkinson cuando tenía 37 años. ¡Fue un shock!. Actualmente mi mano izquierda tiembla y la gente piensa que estoy nerviosa. El Parkinson ha dañado mi capacidad para caminar y arrastro un pie. Mi brazo y mano izquierda tampoco se mueven como debería.  Necesito hacer ejercicio frecuentemente, lo cual lleva mucho tiempo, para evitar que mi cuerpo se deteriore más.

A veces me siento triste. Esta enfermedad me dio demasiado joven, sólo tengo 41 años. Siento la pérdida de lo que no puedo hacer. Espero que pueda estar allí para mis hijos cuando sea mayor y estar llena de energía y fuerza.

A veces me siento tentada a preguntar por qué tengo Parkinson, pero al final no importa el por qué, pero sí sé que Dios tiene un propósito para mí en esto. Sé que puedo animar a otros. He compartido mi historia con muchos y sirvo a Dios a pesar de las dificultades de la vida.

En ese sentido, soy un cristiano que cree en la Biblia. Obviamente, entiendo que no todos tienen las mismas creencias que yo, pero no puedo expresarme con la mayor honestidad sin mencionar mi fe. Así que espero que aun asi sigas leyendo, sabiendo que no se pretende ofender si no estás de acuerdo. Es solo “mi historia”.

Nota:  Escribo en español, siempre que puedo, porque vivo en Perú y creo que hay pocos recursos aquí en español sobre la enfermedad de Parkinson. Espero que la gente entienda mejor la enfermedad.