I have been working on research one night in the middle of the night as it is quiet and easier to focus and I was just about to hop into bed when I spotted a reminder for a meeting that was just about to start with the World Parkinson’s Ambassadors and Eli Pollard – executive Director.
Since moving to Australia I don’t get along to many of these international meetings as they fall at 3am Australia time. This time I was wake and I stayed for a wonderful meeting. Considering the WPC now has many ambassadors that were ambassadors who are not active ambassadors for the next conference to be held in Phoenix. They are looking at choosing the new ambassadors now… as applications have closed recently.
It has been decided that we can call ourselves Alumni WPC ambassadors as many of us are very involved in the congress ongoing but happy to let others have the opportunity to be Ambassadors for Phoennix 2026.
I need to change all my social media little by little.
I don’t usully get up fro 3am meetings … especially if I have to work the next day – but this night I made an exception.
‘Ray of Hope’ wins thePopular 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 videoHandstand 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,
I have lived overseas for over 10 years and I am a seasoned traveller. These tips come from experiences I had and there is a story behind each one. We don’t have space for each story but trust me, I have your best interests at heart:
Buy lightweight luggage to ease the load.
Always have a handbag attached to you with meds, water, tissues, masks, glasses, wallet and passport. This bag maybe additional to your hand luggage as getting things in and out of the overhead compartments is very hard on the flight.
Don’t fill your suitcase or hand luggage – leave space to buy something or receive a gift or take a gift for someone
Travel with others for support if you can
Arrive a day or two early, to rest before the event.
Book connecting flights if you can, 3 hours between, or longer if unconnected
Always arrive 3 hours before your flight at your airport
Ask for a wheelchair at airport (if you have Parkinson’s) in case your meds are off, the immigration line can be a killer – snaking around for hours.
Carry a spare set of clothes in your hand luggage – flight delays, spills, disasters, either way it’s nice to have it handy.
Expect medication issues – My meds don’t work well if I slept poorly
Pack extra medications, several places in different bags
Use comfortable clothes for cold flights, but layers that you can peel off as needed. I find airports and flights vary greatly in temperature. One minute you are freezing the next you are sweating.
Wear plants without a belts for simplicity and slip on shoes that are worn in
Ask a fellow passenger for help, especially lifting bags up or pushing the compartment closed.
Google account etc- cell backup with someone you trust – I had trouble with this but having your passwords on a program like Lass Pass can help you if you have problems with authentication
I have many other tips but this is a starting point. Safe travels!
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:
Tuesday 5th July – In Foundations workshop – By booking only
I’m on the WPC Booth, Banquet Room on Wednesday 11:15- 1:30
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.
UNTIL: August 16 midnight Sydney, Australia time (10am Tuesday 16th AUGUST New York Time)
Find my name: Christine Jeyachandran and Video – Would you sell your house to save your mother?
Under your film will be a vote now button. Click on the button and enter their details.
All votes must be verified to count. That means everyone who votes will be sent an email with a verification link, they then simply verify via that link. This means people cannot cheat and put in fake email addresses. We also have a manual verification system, so if your voters aren’t receiving the verification email don’t stress (spam folders etc) their vote will still count, we can identify the real email addresses. To incentivise voting, we are giving away $50iTunes vouchers to random voters.
Vote and ask others to vote too for the video.
Many years the difference between winning and 2nd has been under 5 votes so every vote certainly counts.
People can only vote once.
ESPANOL:
Por favor, vote por mi vídeo internacional en el Festival de Cine Focus on Ability. Se podrá ver y votar a través de www.focusonability.com.au
Cuando Abre: el martes a las 10 de la mañana, hora de Sydney, Australia (7pm el lunes 9 Agosto en ahora Peru)
Teminara: 16 de agosto a medianoche, hora de Sydney, Australia (9am, martes 16 Agosto en Peru).
Muchos años la diferencia entre el ganador y el segundo lugar ha sido de menos de 5 votos, así que cada voto ciertamente cuenta.
Sólo se puede votar una vez. Creo todo sera en Ingles por eso vez mi nombre y video – el video es en espanol con subtitulos en Ingles.
Busca mi nombre: Christine Jeyachandran y “Would you sell your house to save your mother”
Debajo de su película habrá un botón para votar ahora.
Haga clic en el botón e introduzca sus datos. Todos los votos deben ser verificados para que cuenten. Eso significa que todos los que voten recibirán un correo electrónico con un enlace de verificación, y entonces sólo tendrán que verificarlo a través de ese enlace. Esto significa que la gente no puede hacer trampas y poner direcciones de correo electrónico falsas. También tenemos un sistema de verificación manual, así que si tus votantes no reciben el correo electrónico de verificación no te preocupes (carpetas de spam, etc.) su voto seguirá contando, podemos identificar las direcciones de correo electrónico reales. Para incentivar el voto, regalamos vales de 50 dólares de iTunes a votantes aleatorios.
Vota y haz que todos tus conocidos voten por el vídeo.
