Category: Christine’s Life and story

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 Masters of Public Health GRADUATION

I started my masters in May of 2020 – yes it was during COVID,  while I was home and a little bit bored. I did many an essay and assignemnt from Peru and often attended tutorials at a strange hour of the night just because I liked connecting with the lecturing staff and learning and asking questions. What was suprising was that the tutorials were quite poorly attended at times and I could get lots of questions asnwered.

I finished of my masters with a big research project which I handed in about a year ago, but I am still working on it to get it published, which is not a part of my masters but is the fruit of the research. The research paper itself is not yet approved for publciation but should  be soon as I have revised it considerably. I will be  recelieved to seee that finished. I gratuated from the University as I had my graduation ceremony in March and my lovely Mum and Dad and husband came to see me graduate . Some fun pictures are below in a video on my youtube channel. Don’t forget to subscribe to my channel Christine Jeya on youtube.

cibe . 

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

Sharing my story and inspiring others

“You are indeed an ambassador- of hope! Thank-you for the gift of honest, practical help. I know I’m just one of the many your example has touched” wrote Phillip Yancy a well known author.

I had written to Phillip as a response to his blog about his Parkinson’s Diagnosis – I explained, countrary to his belief, that he did not have to give up exercise and adventures as he thought he might have too – as exercise is crucial to help live well with Parkinson’s. (I wrote a bit more of an introduction to myself too)

One of the unexpected joys of my journey with Parkinson’s has been that I have been able to inspire people to have hope despite their diagnosis of Parkinson’s.
I have had so many wonderful and enouraging comments come my way that motivate me to keep sharing my story, even though it may be old news to my readers and others.

– Many have not heard about the benefits of exercirse.
– Many see a Parkinson’s diagnosis as the beginning of the end! (it does not have to be).
– Many are inadvertently fulfilling the prophesy to degenerate (while I try pretty hard to avoid degenerating).

And I keep telling my story because people don’t know the symptoms of Parkinson’s Disease and we need to raise awareness
– so people can get diagnosied early with the disease and get treatment earlier.
– so people can help the people they know diagnosed with Parkinson’s get the care and exervcise support they need.
– and to fight for a cure. My hope is that young people are inspired to go into research to cure Parkinson’s

– Finally the universal nature of the struggle is clear in my story  and has something in it most people can identify with and this helps create empathy.

As I struggle to look after my health – to exercise and to eat well,  I was willing to be vulnerable and show others that we  all need help and through sharing my journey this year I hope to learn from others too.
I am willing to share a bit of my pain and frustration so we can learn together.  Are you willing to turn up everyday?

Please share with me your story too. Sign up for my blog and youtube Channnel.

thanks Christine

PS – My comment to Phillip Yancy is no longer online but you can read his blog by searching his name and Parkinson’s

 

 

 

 

 

 

 

A Focus On Ability Film Festival Award

Many of you know my story but recently with some footage from my early years training and Jonathan Sayas made a video which brings a bit more of my recent exercise into the picture. It was a bit rushed so I didn’t expect too much but it was nice to get an award and I picked it up in early September at the NSW showing session out near Liverpool. It was sponcered by NOVA employment and I met Anne, Director of Nova Employment, Martin, CEO and Ryan who runs the competition. Here is a link if you want to watch it.

 

Too Busy Not To Post

I am quite busy and a bit overwhelmed with life but happy and enjoying immensley the writing up phase of my research. I am leading a Research Project funded by Fox Foundation, under the larger project Parkinson’s Disease in Latin America: Learning from Underrepresented Populations.

My part is a patient engagement into the needs of people with Parkinson’s in Latin America to understand the research priorities for research from their perspective. I don’t want to give it all away but I met 25 facinating people and now I am writing the results up.  Below is a paper from my teambwhich is a good starting point to understand the theme, if you like reading academic papers:

Burden of Parkinsonism and Parkinson’s Disease on Health Service  Use and Outcomes in Latin America

This article received a citation and very positive responce from the Parkinson’s Journal. Congrats to Dani Kim and the whole team.

And now – I better get back to writing up my research results but I value your thoughts and prayers over the next month so I can do this topic justice and help raise awareness of the needs of people with Parkinson’s in Latin America.

I’d like to meet the team at Michael J Fox Foundation and Michael too and explain to them the results.  My hope is that future research projects will help to make change in reality and improve care for people with Parkinson’s in Latin America. Thanks for your support and hopefully once the research is done I will be better a blogging too!

PS. Too busy not to blog is a title slightly stolen from a book some of you may have read back in the day. (If you don’t what I am talking about – Ask me and I can explain).

Popular Choice Award at WPC 2023 goes to Ray of Hope

‘Ray of Hope’ wins the Popular Choice Award at the  World Parkinson’s Congress 2023

19th July 2023

Christine Jeyachandran’s video ‘Ray of Hope’ won the people’s choice video competition at the World Parkinson’s Congress in early July.

The video was featured in the World Parkinson’s Congress opening ceremony in front of thousands people at the  in Barcelona, Spain. The video tells the story of Ray and Ana Maria, an Irish Peruvian couple living in Peru who are dealing with a Parkinson’s diagnosis, the stigma associated with the disease.

Christine, who has had Young Onset Parkinson’s from the age of 37,  directed and edited Ray of Hope. “Ray and Ana Maria found my video Handstand for Parkinson’s  which was a finalist in the WPC video competition in 2019, in Japan.  We decided to meet as we both were living in Peru and became friends.

Christine decided to make a documentary to raise awareness about Parkinson and interviews 5 people including Ray. She has been unable to complete this project but was struck by Ray’s eloquence and decided to make ‘Ray of Hope’ as a short film for the Congress video competition for 2023.

Ray and Ana Maria are involved in a support group in Lima for people affected by Parkinson’s (patients and carers). Many with Parkinson’s face physical challenges as well as depression and isolation which compounds their decline. Many lack access to information and resources.

Christine wanted to get Ray and Ana María to attend the Congress to get further resourced to help the people in Peru with Parkinson. She put the video in the name of Ray, that if by chance it won, the prize would help Ray get to the conference. Christine was already booked in to attend and speak, but Ray received a travel grant and support from the WPC to help them get there. They are so grateful.

The video has views and votes from Peru, Australia, Ireland, from Latin America and throughout the world. Christine and the protagonists want to thank everyone who voted and helped them win the people’s choice award.

Christine says “Ray was overjoyed with the win. He travelled to Spain to receive the award and his sibling came from Ireland to see him there”.

Although Christine video didn’t win in 2019, she was so inspired by the Congress she started a support group on her community in the south of Peru, where she was living at the time and cofounded  Spanish-speaking Alliance of stakeholders advocating for better care and research was chosen as an ambassador for the WPC. She sees that the congress has enthused Ana Maria and Ray.

Ray: I told my story because I wanted to break free! I felt oppressed by Parkinson’s. By opening up to the world and sharing my story I believe I helped myself and others see the hope beyond the disease.

Christine: “The comments and feedback has been encouraging and it is our hope Ray of Hope will challenge the stigma associated with Parkinson’s. Some say in the west but if there is no stigma, then why do so many people hide their diagnosis”. 

Please share this video to help people understand Parkinson’s but also note that everyone experiences Parkinson’s differently,

https://youtu.be/moq1JRD4qPs

 

https://youtu.be/moq1JRD4qPs

Handstand for Parkinson’s: https://youtu.be/h1B6kUgN6WQ

 

The World Parkinson’s Congress is almost here

It has been 3.5 years in the making. I became an Ambassador in February 2020 and we’ve met bi – monthly with the ambassadors ever since.  So it’s surreal that the congress is finally a reality. So much work has gone into it and there are over 3000 people registered. There is still time to register and or sponsor the event so never fear.

The 6th World Parkinson Congress (WPC 2023) will be held in Barcelona, Spain from July 4 – 7, 2023. Everyone in the community who is touched by Parkinson’s, whether a researcher, physician, family member, clinician, nurse, or rehab specialist is welcome to attend the WPC 2023. World Parkinson Congresses are 100% inclusive scientific events.

WPC 2023 will be taking place at the International Barcelona Convention Center at Plaça de Willy Brandt, 11-14, Barcelona, Spain 08019. This location is convenient to the subway system and hotels that will have rooms for delegates.

Where to find me at the congress including 3 speaking opportunities:

  1. Tuesday 5th July – In Foundations workshop –  By booking only 
  2. I’m on the WPC Booth, Banquet Room on Wednesday 11:15- 1:30 
  3. Thursday 6th July 12:30 pm

Workshop: Reaching Underserved Communities in Latin America 

Host: Christine Jeya (Australia)

Where: Support Group Leaders room is # 312. Hosted by the PMD Alliance

What: Interactive learnings about needs, challenges and strengths in Latin America. I am so excited about this session as I am making it super interactive so you can understand the needs and frustrations of living with PD in South America and also the opportunities and joys.

       4. Friday 7th July 3pm UNANNOUNCED SESSION and location – I will update the details here.

       5. Also my video RAY of HOPE will be shown at the beginning of a session but I don’t know when it will be.  Last time the session at              9am  started with the same short listed video so if you are in attendance you shouldn’t miss my video.

 

There is much more going on and I look forward to meeting folk in person and hope I remember names and faces. My husband David is a volunteer too and is signing up for extra volunteer sessions, bless his soul. He said they need more help!

David and I will have a few weeks holiday with family and friends in the lead up to the congress but I still have a little preparation on the side. 

If you haven’t signed up for the congress it is not too late. 

https://wpc2023.org/

Thanks for all your support 

Christine Jeyachandran 

 

 

 

 

 

 

 

 

 

Love, self discipline and power: Happy International Women’s Day ladies.

I started school with my mother as my teacher. I was quick to disappear from the classroom across to the other side of the village when someone knocked on the door. My Mum was the local nurse who happened to pull out teeth and deliver babies too as she was a trained midwife. From her example I learnt to help those in need. Maybe because of my flighty ways I went to boarding school at 7 year 11 months, and I was up to the grade so my teacher had me repeat a grade without them consulting my parents. I eventually learnt how to work hard. Now I finishing of my second masters degree I encourage other women to know that we are more capable of more than we can imagine. Physically too. Set your mind to something and ask for help if you are lost and just keep putting one foot in front of the other.

And as you go always be  encouraging others along the journey too. I now work in Public Health too just like my Mum who clearly influenced me. Thanks Mum!

We all have moments of fear but if we choose Love and self-dicipline we are powerful indeed.

“For the Spirit God gave us does not make us timid, but gives us power, love and self-discipline”.