Alianza Iberoamerica de Parkinson

Christine Jeyachandran’s profile:

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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
 

Your film has 44 wonderful comments

My Film” Would you sell your house to save your mother” was recently in a video competition called “focus on ability”. Unfortunately the website could only hold 10 comments at a time so I couldn’t see all the comments and I asked Ryan from Focus on Ability if there was a way I could see them all. He wrote “Your film has 44 wonderful comments”. I was shocked, that it had so many and most were from people I didn’t even know.

Thank-you everyone for voting and for sharing and for the amazing comments on the video. I do not believe it won the popular vote but you never know and on the 27th October about 7pm Australian time it will be announced in a ceremony on facebook of “Focus on Ability”. It is up for a judges award as an International Documentary.

Win or loose it has been a valuable experience for me in editing the video and managing the whole process of the competition. The video has been seen by over a 1000 people more than saw it previously and many have been challenged, realised how blessed they are and learnt something about Parkinson’s they didn’t know. I have also connected with many people who helped me share it yet again. 

It also encouraged me to start another video project but this time with a young professional. I don’t want to give too much away but I think it is going to to be a powerful short documentary and our aim is to get it into a mainstream film festival. 

Of course I’m now learning you need funding to promote your film and bring it to the attention of the public but since we’ve stepped out in faith and filmed the project we’re going to keep going and have faith that the funding to promote it will come in once we have the final product, it should sell itself. 

I don’t want to give too much away just yet but watch this space. 

Thanks again for your support and interest. 

Christine J.

44 Comments from around the World

Beautiful and heart touching video. Creates a lot of awareness on the disease.. God bless the family.Marsden Park Australia
What an inspiring and educational short film CongratulationsSanta Monica United States
Very touchingSutherland Australia
super videowesley hills United States
Amor sensibilidad empatia y compromiso necesarios para afrontar esta condicion y hacer de esta vida un mejor mundoPereira Colombia
Tried to write something but have no words to describe mother .Liverpool Australia
This portrays humanity and love that is genuine.Bamenda Cameroon
Excellent work by Christine in raising awareness about this disease and the challenges the patient and their families face.Westleigh Australia
Christina honoured her mother by following and keeping one of the ten commandments.Kolkata India
Inspiring and Impactful Love is a verb.Sydney Australia
Well done ChristineCaterham United Kingdom
Excellent work of her daughter. She shows compassion and love for her mother. Credit goes to the mother herself while rearing her. She has learnt from her mother herself. It's a rare exampleDelhi India
Es una gran realidad no hay cura para el Parkinson yo tambin lo sufro pero el amor todo lo puede est gran familia merece ganar con ste vdeo.Voten e inviten a ms personas que lo vean y voten por el. El parkinson no nos definesin embargo es una enfermedad muy difcil de sobrellevar tanto el paciente como la familia se van consumiendo con la enfermedad.Escobedo Mexico
Excellent story and awareness of this decease. Amazing family and the way they took care of their mother
Berwick Australia
JuampyJuampys
Christina did a wonderful thing I wish she become a roll model for many. Many do not care for their aged parents even though they have plenty of wealth. May the Lord bless ChristinaPathanamthitta Kerala India
Very touching. Indeed true love can do anything.Thane-Mumbai India
Muy conmovedora historia y lo ms importante lucharon por su madre la f mueve montaas un ejemplo a seguir bendicionesTALARA Peru
Excellent very touchingChennai India
Truth well told…Bengaluru India
Thank you for helping raise awareness for this unrelenting disease. We all need to speak up to raise awareness so we can end PD nowCalifornia United States
PIURAPiura Peru
A heartwarming story will told. May the angels of God protect us all from evil.Oatley Australia
Inspirational story about a family willing to sacrifice their home to help their mother with Parkinson's.Penshurst Australia
Piura
Piura
An extremely moving film. What a wonderful sacrifice this family has made for their mother.Caterham United Kingdom
It is an amazing story well doneCarlingford Australia
Amazing story Thank you for sharing and creating the video to raise awareness on debilitating Parkinsons disease and its impact on function family and finance. Thank you Pray that there will be a breakthrough in finding cure for this disease.Homebush Australia
Very natural without exaggeration down to earth informative filmBangalore KarnatakaIndia Australia
Very moving Hope we find a cure for Parkinson soon. Instead of spending trillions of dollars on war machinery we should work on finding cure for Parkinson AIDS Cancer etc.
Warminster United States
Rosita is not like many people of this world but allowing God to change the way she thinks. She knows how to do everything that is good and pleasing to God.Romans 122 CEV. In serving her mother's needs she realizes the value of mothers. Parkinson's is debilitating and without medical intervention life is severely restricted and causes an intense emotional with a mental impact that isolates the person. Thanks for highlighting the need in some little published countries.
Cromer Australia
A true story of love compassion and sacrifice an example to emulate of Honouring your father and mother a story that will inspire many to pray for and support those suffering from Parkinsons disease.Caterham United Kingdom
Very enlightening thank you.2207 Australia
Well done a brave step to save the mother and I support this because as scriptures says nothing is greater then LOVE… It is God's love that saved us from the bondage of sins and saitan…All Praise and Glory to God for giving some comfort for this sister…
Little Andaman India

The world needs to see this powerful story. Wish this film will get recognized and that many more will benefit from this very open and honest effort.
Bangalore India
A close knit family's to put the Mother above all their personal need which is selling their prized possession 'The House' is very touching and moving. Very appealing film.
Bangalore India
Truly touched.
Sydney Australia
Thankyou everyone for your votes. I know I have to a wonderful community supporting me. My friends like Ana Mara Sabela Lizzie Esme Larry. David and my kids too have put in hours of help checking and rechecking. It takes a community to make a documentary. And thanks to the family for inspiring so many. I have a longer version of their story at Christine Jeya on YouTube. We hope this video shows the need for a cure and better treatment for all.Arequipa Peru
Inspirational.Concord Australia
Wonderful Christine So good
Caterham United Kingdom
A video which depicts reality of life.It was a very moving video about the effect of the disease. More so about the sacrifice of the family to give the life back to the mother who gave them life in the first place and made so many sacrifices to bring them up.The video is about celebration of life rather than gloomy helpless one It is about victory over one of the most debilitating diseases in life.Penshurst Australia
Well done. If the problem can be solved by money its not a problem its the costs. – Jewish proverb. I would do the same.
Old lyme United States
Ta Doris t vas a ganar
Piura Peru
Muy lindo y espero que esto llegue a muchas personas para que sepan su historia
Piura Peru

Rise21 Finalist – Alianza Iberoamericana de Parkinson

Alianza Iberoamericana de Parkinson is an exciting initiative that needs support! I’m looking to generate revenue to get this life-impacting initiative off the ground. My project has been short-listed in RISE21 a competition for social enterprises that help reach the UN development goals. 

Without timely treatment, Parkinson’s Disease disables many. The Alliance of Parkinson’s aims to increase the quantity, quality and accessibility of resources and training available to health professionals and patients and their families, to improve services and the quality of lives of people with Parkinson’s throughout the Spanish speaking world.
See this video for more information. Please contact me by comments if you’d like to know more or can help fund or find funding for this Project:

Please watch the video at this LINK: https://lnkd.in/dMt3Jds

Special thanks to Ludovic Kohn for the drone footage – check out his channel here for other amazing footage. Amazing! More of his videos on his youtube channel:

https://www.youtube.com/channel/UCbCDhE-V0Id4d9YlIiiEQrg


 #health #parkinson #rise21 Ignacio Mata

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.