Christine

Chemicals and Parkinson’s Disease – and how the Netherlands has reduced Parkinson’s incidence.

Dr Bastiaan Bloem, famous neurologist is visiting Australia from the Netherlands this month.

Did you know that there has been a 60% decrease in the incidence of Parkinson’s disease in the Netherlands, 1990-2000?

Parkinson’s is rising! Yes – in most countries

Is Parkinson’s is largely man-made? Is Parkinson’s preventable?


Research has shown exposure to certain chemicals used in everyday products and agriculture could be linked to Parkinson’s Disease.
This issue has come into the eye of the Parkinson’s community internationally because a booked called Ending Parkinson’s was published in 2020 telling about the authors investigations and concerns about the connection between Parkinson’s and chemicals. The ‘coincidental’ high rates of Parkinson’s in farmers in the USA is a big part of this book but it is not just limited to agricultural products so keep reading to see what other chemicals are dangerous. 

I have read the book Ending Parkinson’s and recommend it to you all to read, or listen to on Audible. I am not plugging it at the authors request, in fact they are happy to help people get access to the book if they don’t have the means to do so.

The authors and the Michael J Fox Foundation are calling for a ban of the usage of such chemicals. This letter linked explains it well. 

But this is a sensitive issue because the some people could loose a lot of money. In the USA one of the companies involved is denying the issue completely, but reports have been done in Australia by the same company that show that 18 billion could be lost if Paraquat was banned. 

I will leave it to you to check the links provided and decide for yourself. I am not an authority but a person with Parkinson’s. I am not a farmer and though I have lived in rural areas have no clear reason to link my own diagnosis at age 37 to a specific chemical. I am raising awareness  and encouraging people to keep in touch with me on this issue by completing this link and or signing a petition. 

What do the Experts Say?

Dr Bastiaan Bloem on Davis Finney Foundation Webinar

Professor Bloem believes this acceleration is due to environmental toxins, pesticides in particular.

Paraquat, a highly toxic weed killer that has been banned in more than 60 countries but is still used in the US, is a complex 1 inhibitor and is very toxic to the area of the brain that Parkinson’s impacts, the substantia nigra.

Pesticide use began being used worldwide in the 1950s to feed a rapidly growing world population. People can be exposed to pesticides through well water, as well as through the food chain. Because milk in particular has been found to contain high concentrations of pesticides, many Parkinson’s researchers including Professor Bloem believe avoiding or limiting dairy may help prevent Parkinson’s. 

 

Parkinson’s Foundation: From Parkinson’s Foundation Website

Currently, there are more than 300 lawsuits filed against Paraquat across the U.S. Due to the multitude of cases, a multidistrict litigation (commonly known as MDL) was passed to help accelerate the legal proceeding

From Parkinson’s Foundation Website

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I know that I haven’t asnwered all the questions that I have raised but there is much to learn from the links below. 

This is more than enough to start your reading and I will write more soon:

Please sign up to keep in touch here!

 

Links: 

Are you a farmer? And Ending Parkinson’s Disease website https://endingpd.org/parkinsons-and-farmers 

Summary article: 

https://www.theguardian.com/us-news/2022/oct/20/syngenta-weedkiller-pesticide-parkinsons-disease-paraquat-documents

From the Michael J Fox Foundation: 

https://www.biologicaldiversity.org/campaigns/pesticides_reduction/pdfs/2022-11-04_MJ-Fox-Fdn_CA-paraquat-reevaluation.pdf

 

Documentary: Poisoned Land https://youtu.be/6i2sJwxw5Uc

https://www.theguardian.com/us-news/2023/jun/02/paraquat-parkinsons-disease-research-syngenta-weedkiller

Syngenta:

….but to complicate the situation look what just came out from Syngenta!

Denying all links between Parkinson’s Disease and paraquat. https://youtu.be/DuqG9CTrWMQ?si=olKGBFua8qqX7LQc

But in Australia they’re honest- making money is more important to Syngenta.

https://www.syngenta.com.au/news/viticulture/18-billion-cost-ag-absence-paraquat

Australia

https://amp.theguardian.com/australia-news/2022/jul/11/why-are-pesticides-banned-overseas-still-used-in-australia-and-what-does-it-mean-for-the-environment

https://sbs.com.au/news/article/parkinons-cluster-prompts-calls-for-further-pesticide-research/k03yhlaf0

https://www.theguardian.com/australia-news/2022/sep/27/australian-food-is-grown-with-dangerous-chemicals-banned-in-other-countries

https://apvma.gov.au/sites/default/files/publication/20766-paraquat-toxicology-report-summary-1-26-10-2016.pdf

https://www.fightparkinsons.org.au/about-us/media-release/paraquat-herbicide-and-parkinsons-disease/

au/about-us/media-release/paraquat-herbicide-and-parkinsons-disease/

 

 

RAYO DE ESPERANZA ganó el concurso de vídeos elegidos por el público en el Congreso Mundial de Parkinson

THIS ARTICLE APPEAR IN ENGLISH BELOW:

El vídeo de Christine Jeyachandran “Ray of Hope” (“Rayo de esperanza”) ganó el concurso de vídeos elegidos por el público en el Congreso Mundial de Parkinson celebrado a principios de julio.

El vídeo fue presentado en la ceremonia de apertura del Congreso Mundial de Parkinson, ante miles de personas en Barcelona (España). El vídeo cuenta la historia de Ray y Ana María, una pareja Irlandesa-Peruana que vive en Perú y se enfrenta al diagnóstico de Parkinson y al estigma asociado a la enfermedad.

Christine, que padece Parkinson de aparición temprana desde los 37 años, dirigió y editó Ray of Hope. “Ray y Ana María encontraron mi vídeo Handstand for Parkinson’s, que fue finalista en el concurso de vídeos WPC en 2019, en Japón.  Decidimos conocernos ya que ambos vivíamos en Perú y nos hicimos amigos.

Christine decidió hacer un documental para crear conciencia sobre el Parkinson y entrevistó a 5 personas incluyendo a Ray. No ha podido completar este proyecto, pero quedó impresionada por la elocuencia de Ray y decidió hacer “Ray of Hope” (Rayo de esperanza) como cortometraje para el concurso de vídeos del Congreso de 2023.

Ray y Ana María participan en un grupo de apoyo en Lima para personas afectadas por el Parkinson (pacientes y cuidadores). Muchos enfermos de Parkinson se enfrentan a problemas físicos, así también como la depresión y el aislamiento, que agravan su deterioro. Muchos carecen de acceso a información y recursos.

Christine quería que Ray y Ana María asistieran al Congreso para conseguir más recursos para ayudar a las personas con Parkinson de Perú. Puso el vídeo a nombre de Ray, para que si por casualidad ganaba, el premio ayudara a Ray a ir a la conferencia. Christine ya estaba inscrita para asistir y hablar, pero Ray recibió una beca de viaje y apoyo del WPC para ayudarles a llegar hasta allí. Están muy agradecidos.

El vídeo tiene visitas y votos de Perú, Australia, Irlanda, de América Latina y de todo el mundo. Christine y los protagonistas quieren dar las gracias a todos los que han votado y les han ayudado a ganar el premio del público.

Christine dice: “Ray estaba encantado con la victoria. Viajó a España para recibir el premio y su hermano vino desde Irlanda para verle allí”.

Aunque el video de Christine no ganó en 2019, se sintió tan inspirada por el Congreso que creó un grupo de apoyo en su comunidad del sur de Perú, donde vivía en ese momento, y cofundó la Alianza de habla hispana que abogan por una mejor atención e investigación, y fue elegida embajadora del WPC. Ella ve que el congreso ha entusiasmado a Ana María y a Ray.

Ray: ¡Conté mi historia porque quería liberarme! Me sentía oprimido por el Parkinson. Al abrirme al mundo y compartir mi historia creo que me ayudé a mí mismo y a otros a ver la esperanza más allá de la enfermedad.

Christine: “Los comentarios y las reacciones han sido alentadores y esperamos que Ray of Hope desafíe el estigma asociado al Parkinson. Algunos dicen que en el Oeste no existe el estigma, pero ¿por qué tanta gente oculta su diagnóstico? 

Por favor, comparta este vídeo para ayudar a la gente a entender el Parkinson, pero también tenga en cuenta que cada persona experimenta el Parkinson de manera diferente.

https://youtu.be/moq1JRD4qPs

 

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 Hopewon 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

 

Travel Tips (For People with Parkinson’s and regular folk too)

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!

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 

 

 

 

 

 

 

 

 

 

Saturday the 15 April – Fundraiser

We’re having a fundraiser picnic this coming Saturday 15 April,  we’ll provide cake, fruit and other snacks and drinks. Just come to catch up or Donate to shake it up fundraiser.

We have removed the specifics of where from this public announcement – but us contact directly if you are local and you’d like to support. Support via online donation welcome too.

Donations: https://pause4parkinsons2023.raisely.com/t/christinesparkinsonspicnic?fbclid=IwAR2FuExRAZ83AQo9-W-o8mKih4N74HJt77aLRItzvLHq8RoaR4mwcU53LRQ

 

Thanks for all the votes and views for Ray of Hope. The video seems to be going a bit viral (small scale with almost 2800 views) so please share it, like and comment which helps the algorithm of YouTube share the video simply because it’s already trending and most of all DONT FORGET TO VOTE BEFORE THE 20TH APRIL

VOTE for RAY OF HOPE:

https://web.cvent.com/survey/c8190b9c-c629-439a-afff-e516c2ba3cab/welcome?fbclid=IwAR3tGAYOwE0RCAv6TdUridpGWLJIqa9nwvnCXY2k3xSXf9JncQABtmay6ik

VOTE FOR RAY OF HOPE

My video RAY OF HOPE has been short-listed to the World Parkinson Congress VIDEO competition 2023,  so I need 4 minutes of your time. I entered the video under the name of the protagonist. RAY FEENEY, not Christine Jeyachandran.

To win the popular vote, Ray and I need your vote. 

You can only vote once and for this reason they take your name and email but they don’t put you on a mailing list. It is to discourage dishonesty. Please vote only once and kindly recruit your family and friends to vote too.

Step 1.  Go to this page to watch the top 12, or Just Ray of Hope https://wpc2023.org/page/Top12-WPC2023

Step 2. You can skip the videos and just vote

https://web.cvent.com/survey/c8190b9c-c629-439a-afff-e516c2ba3cab/welcome

The button START appears – Press it then vote for RAY OF HOPE – RAY FEENEY

(As per the images)

 

Thank-you for your vote and support. You can also note my other video got an honorary mention. It is called: INVIGORATE

 

 

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”.

I have a dream ….for Club Dopamine!

A research survey found a significant number of Latin American (Llibre Guerra et al; 2022) people had Parkinson’s Disease symptoms but had NEVER  been diagnosed and not had medical or neurological attention.

The study didn’t ask why but we can imagine some don’t know what Parkinson’s is and others or those same people hide because of stigma and discrimination.  They become isolated which worsens their disability and increases immobility.

Parkinson’s disease has no CURE.

Raising awareness about Parkinson’s is crucial to prevent late diagnosis and start early physiotherapy/exercise.

We must explain that PD is not a curse, your fault or something to be ashamed of.

We are taking action to prevent discrimination and isolation and encourage holistic treatment including exercise which can help symptoms considerably.

We  need  help!

I have a small project I’d like to find funding for that aims to empower people with Parkinson’s (PWP) to thrive:

– to be understood,

– to stop isolation,

– and to get treatment!

Over the last few years advocates have emerged who are willing to share their stories about living with Parkinson’s in Peru. The daily struggles,  the small triumphs and the ongoing battle inspire us to continue. My story has inspired people to exercise to improve their Parkinson’s symptoms and Dorys’ story about the family’s sacrifice has had immense international feedback.

I just published Ray’s story , and it is turning heads and breaking stigma. In 3 weeks it has had 1000 views and lovely comments.  All this without  marketing, imagine what we could do if we had a marketing budget.

Stories connect us. Stories about family. The love seeps into our hearts: strained voices, biting of lips, and love in a look. We have these treasures(interviews) in our hands as I filmed them with a professional in 2021  but they need to be edited and marketed for maximum exposure.

I can’t take this on. I’d like to see it created into a documentary for a film festival. It will give an editor a wonderful creative opportunity. They’re in Spanish but modern technology means this isn’t a barrier. I don’t know how it is going to get made but I have faith it will be made and will be a powerful approach to breaking down stigma but not in an educational boring way…

Watch the first story which happens to be in English and catch a bit of the essence of this project.

I have a dream….but I have had many dreams and I know I often get above and beyond what I expect. It is happening in my life right now …but that’s another story.

I dream not for myself but for those who message me in pain in the middle  of the night, Sara has no neurologist, no exercise coach, she can’t sleep  because of the pain.

For Sara and many more… For Club Dopamine!  May this project get the funding or passionate philanthropist it needs.

Llibre-Guerra JJ, Prina M, Sosa AL, Acosta D, Jimenez-Velazquez IZ, Guerra M, et al. Prevalence of parkinsonism and Parkinson disease in urban and rural populations from Latin America: A community based study. The Lancet Regional Health – Americas. 2022 Mar;7:100136.

Ray’s story: