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