Latin America

Finally the patient engagement research is published in a peer review journal

For those who have been following my journey: Finally the patient engagement research is published in a peer review journal called Health Expectations.

Title: Barriers and Facilitators to Accessing Healthcare for People With Parkinson’s Disease in Latin America: A Qualitative Study
Link: http://dx.doi.org/10.1111/hex.70380

This all began in 2021 when I was invited by Dr Jorge Jesus Llibre-Guerra to lead the patient engagement for a project funded by the Michael J. Fox Foundation. I was undertaking a Masters at UNSW and secured support from UNSW to supervise the project: Catherine Spooner and Mark Harris. They and Ana who led the groups and Matthew and Jorge have always there for support, albiet timezones away.

I oversaw study design, data collection, and community engagement across 10 countries, with 4 online focus groups across 5 plus time zones at once and in Spanish.As far as we know this is the first patient engagement into the needs of people with Parkinson’s in Latin America.

A big thankyou to everyone who has supported me on this long and challenging journey and expecially my co authors Catherine Spooner, Ana Margarita Rodriguez Salgado, Matthew Prina, Joel Rhee, Jorge Jesus Llibre-Guerra, Dani Kim, Juan J. Llibre-Rodriguez, Mark F. Harris

I believe it is within the interest of research journals to help improve the translation of research , in both senses of the word: language translation and application/usefulness of the research on the ground in a timely way. I want to have an official translation attached as a supplementary document or have it linked as a separate DOI searchable in Spanish.
I chose Healh Expectations journal because it has an excellent reputation of prioritising the voices and interests of patientsw. I will promote my research to the best of my ability but without a Spanish version, the Spanish speakers most affected by the themes of my paper don’t read English and will need to receive this in Spanish. I hope to generate much interest in the Spanish speaking Parkinson’s community.
Non-English speaking countries miss out because the entire academic process is in English. My colleague
Paulo Silva Pelicioni shared with me the following published paper he co-authored that argues for translation of research in detail.
https://www.mdpi.com/2227-9032/11/13/1932

I am in the process of organing the translation and hope all journalsa will pioneer this inclusive and world changing approach to translation of research for better translation and research reach. A change the policy ongoing could have so many impacts on health in Latin America and well beyond.
It is heartbreaking to see my friends with Parkinson’s in Latin America rapidly declining. Let’s hope this research has an impact.

With gratitude and anticipation
Christine Jeyachandran
https://handstandforparkinsons.com/2022/10/10/christines-profile/

PS.
Please get in touch if you have further interest.
I would like to prepare short patient friendly version as well.

My blog brings hope and help

I am always amazed at the amazing connections made because of having Parkinson’s.

This is a Guest blog from lovely Judy who found my blog: The story started when Judy from Georgia USA, did student exchange back in the mid 70’s in Arequipa and she lived with the Guillen family. They ‘adopted ‘her into their family as their daughter.That meant she was ‘adopted into the entire extended family. She keeps in touch with Maria and her husband Diego who has recently been diagnosed with Parkinson’s who she still keeps in touch with (names changed for their privacy)

Fast forward to December 2024:

“I messaged Gabriella to see how Juan was doing and found out that he seemed to be deteriorating quickly. I knew medical resources in Peru are limited as Maria herself sought treatment in Lima (the capital) after she was diagnosed with leukemia several years ago. Thankfully she is in remission.

I asked how he was and she said he medications didn’t seem to be helping and was frightened she was for him. No referrals were made to any specialists or support groups. She was in despair! “Que puedo hacer (What can I do)?”

Her words broke my heart. I didn’t know how to answer her, but I began to pray, asking God, “Are there resources for Parkinson’s patients in Peru?” Scrolling through the internet I found Liga Contra de Parkinson’s Arequipa first. I don’t know if the group is active, but it’s a start, I thought, a place for Maria and Diego to connect with others on this journey. My next find was a foundation for Parkinson’s education in Spanish. Resources in her language! Yes! But what appeared next on my screen was miraculous! God heard my prayer!!!! The website for Joni and Friends posted an article titled Unexpected Opportunities to Declare God’s Glory Through Parkinson’s Disease (May 30,2024) In the foreground of the photo stands a smiling, young woman against the backdrop of a city I realized I knew when my eye fell on the volcano Arequipa’s people call, El Misti. That smiling, young woman is Christine Jeyachandran. God had directed me to an individual who is walking the journey of Parkinson’s and who has lived not only in Peru, but in Arequipa!

Through reading the article I discovered that Christine writes a blog inspired by her video Handstand for Parkinson’s and it started with her Diagnosis in Peru where she went on to encourage and educate others on this journey on the essential link between exercise and management of the disease. She also makes educational videos in both English and Spanish. I sent all these mentioned resources to Maria and then took a stab in the dark by writing a comment on Christine’s blog, hoping she would respond. In a few days, she did!!!! We set up a time for a 3-way chat-Maria in Peru, Christine in Australia and me in the US. Christine opened her laptop and her memory graciously sharing resources-a doctor, a physical therapist, a support group etc. giving Maria practical help and action steps for helping Diego. Maria is entering this next phase of the journey as a caretaker with renewed hope and gratitude. We as a family are grateful for the connection God made and for the love Christine pours out on those she comes into contact with.

To God be all the glory! We are in awe of You, O God, Almighty!

Judy Hamilton January 23, 2025

Thanks Judy. What a blessing it was to meet you all. It’s not easy in Arequipa and the group stubbles along as best they can. Pray that they will have energy to support each other and find good medical resources needed.

Pictures from Judy’s time in Arequipa. Thanks for sharing

Michael J Fox Research Project

This is a project announcement close to my own heart. See the link below.

Yes that is right it is about Parkinson’s Disease in South America, and specifically the Alianza Iberoamericana which I co-founded will be organising a stakeholder engagement. I will be a researcher on this project, which is is just in the planning staged right now. It is a huge undertaking and I am getting guidance from the proposal team and my university in Australia.

It has been a big team of people who put the application together and a big team of people who worked to get the Alianza Iberoamericana de Parkinson’s started.

I would love to take it further and have greater opportunities to help the Parkinson’s Community. Pray for a clear path. trustworthy partners and the right opportunities.

https://www.michaeljfox.org/grant/studying-epidemiology-parkinsons-disease-latin-america-learning-underrepresented-populations

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 Congratulations	Santa Monica United States
Very touching	Sutherland Australia
super video	wesley hills United States
Amor sensibilidad empatia y compromiso necesarios para afrontar esta condicion y hacer de esta vida un mejor mundo	Pereira 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 Christine	Caterham 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 example	Delhi 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
Juampy	Juampys
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 Christina	Pathanamthitta 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 bendiciones	TALARA Peru
Excellent very touching	Chennai 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 now	California United States
PIURA	Piura 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 done	Carlingford 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 film	Bangalore 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

Featured in Spanish Blog – Translation here.

https://pdeparkinson.blogspot.com/2021/01/fuerza-y-determinacion.html

Para leer en espanol was al enlace arriba.

This is a guest blog I made on a Spanish website – I translated it into English here:

I am Christine Jeyachandran and I was diagnosed with Parkinson’s disease seven years ago, when I was 37 years old. People are surprised that I have Parkinson’s because of my age and also because I am open about it. It was difficult at the beginning . In 2018 I wrote: “Sometimes I feel sad. This disease got me too young, I am only 41 years old. I grieve the loss of what I can’t do. I hope I can be there for my children when I am older and be full of energy and strength.”

But in my journey I have shown that I should not wait for the bad things to happen, but to change my destiny with determination. For me, light exercise was not working. My Parkinson’s symptoms were getting worse, my left hand was shaking and my ability to walk and my arms were affected. Light exercise was not helping me prevent my body from deteriorating further. In 2018 I decided to take classes, 3 times a week of artistic gymnastics, starting 1 hour per week of class and going up to 2 hours.

It was very hard because I couldn’t move much, I was sweating and sweating, my muscles hurt and I was afraid to do some exercises…. But I filmed my experience and my story. My video Handstand for Parkinson’s was a finalist in the World Parkinson’s Congress video competition. I regained my range of motion, balance, flexibility, coordination and I was stronger than ever. It is amazing for me to see the change in my Before and After exercise video.

Now I am an ambassador for the World Parkinson Congress 2022 (WPC), I want to encourage you to go (Barcelona). It is for professionals and people with Parkinson’s and their caregivers. WPC changed my life, because I was able to learn a lot about Parkinson’s and I came back ready to help my community in Peru. I am Australian but I have lived in Peru with my family for 10 years now. I am now passionately helping to educate people with Parkinson’s and encouraging them to do exercises to treat Parkinson’s. I want to finish with a reflection on the attitude of people with Parkinson’s.

I want to end with a reflection on the Parkinson’s attitude I see around me. People with Parkinson’s usually don’t like to go out in the street because there is prejudice against people with disabilities. People hide their disability. Sometimes others want to blame and say it is a curse from God.

If they go to church, sometimes they are told to pray and to have more faith in God for healing. If there is no healing, they don’t want to go to church anymore. On once or twice it was said to me: “You need to pray and have faith”. I agree I need to pray more and have more faith but I want to say it’s nobody’s fault that I (or you) have Parkinson’s.

There are many people in the Bible like Paul, who had great faith and God did not heal him and there are people who suffered: Daniel, Joseph, Naomi, Hannah and Job. I will be the first to admit that I fail more often than I would like to openly admit, but I believe that God is gracious and loving. He sees our hearts. If Jesus died on the cross for my sin, I don’t believe he would punish me (with a disease) unless it is a direct consequence of bad choices, i.e. smoking can cause lung cancer.

In the Bible there is a story about a blind man (John 9: 1-12) and Jesus’ disciples asked, “Rabbi, who sinned, this man or his parents, that he was born blind?” “Neither this man nor his parents sinned,” Jesus said, “but this happened so that the works of God might be shown in him. As long as it is day, we must do the works of him who sent me.”

Jesus healed the blind man and showed his power. I don’t know why I have Parkinson’s, but I have had the opportunity to meet many with Parkinson’s and connect with them. I can encourage and educate them and that gives me joy and purpose and I can love them in a world where they feel rejected at times. The disease is not good but I know for sure it is not a curse from God because of past actions.

I cannot hide my disability and any question or comment helps educate one more person, one person at a time. I can’t sit at home and hide, I have responsibilities and children, and there are beautiful places to see and mountains to get to the top off. I can’t stop living and enjoying life, even if I am scared sometimes.

I have learned that ‘Courage is not the absence of fear, but the ability to go on in spite of fear’.

Christine Jeyachandran

Ambassador of the World Parkinson Congress 2022

Blog: English and Spanish https://handstandforparkinsons.com

Spanish website: https://activateparkinson.com

Youtube: Christine Jeya, https://www.youtube.com/c/ChristineJeya

Twitter: handstand for parkinson’s @christinejeya

Serendipitous meeting

Esta historia esta en español en https://activateparkinson.com/

I was on vacation, relaxing when I met a friendly guy in the same hotel, let’s call him Kevin. He is traveling alone, in his 50’s and my 6th sense told me there was a reason why I should chat with him. But he worked in real estate, no connection there!

But when I told him about my PD association he was full of advice as he had worked in pharmaceuticals previously. He said I should get a social media plan for my organisation. Of course I know that social media is important to get the message out so I nodded politely when he kept pushing this point.

But the next day he went from a different angle, the more members you have the more you can influence. I have about 100 members and maybe contact with 200 nationwide.. not enough to get this on the national agenda, not even enough for the pharmaceutical companies to take me seriously he says. He said if you can get 5000 people then you have power.

The penny dropped.

So we need to use paid advertising in social media to get it beyond PD circles. It turns out Kevin had a deceased parent with Parkinson’s and it was clear he’d never heard of such support groups. Point made.

Activate (my NGO) needs to have a presence that cannot be ignored, so that Parkinson’s treatment and education are actually on the agenda. And so that pharmaceutical companies will come to the party with conference funding, educational resources and doctors etc. Let’s be honest – we’ll always need them, but they need us too and if we group together, just maybe we can influence them for the better.

I asked Kevin to help me draft a letter to send to the pharmaceutical companies which he kindly did but now I’ve got to step back and set up my systems to meet the swell of responses that will come in from my media campaign (create that too) and automated response forms and information sheets etc. Yes, this could take months but April is Parkinson’s awareness month so that could give me a good target.

It is funny how even on vacation the coincidental meetings with people can influence work.

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?