3 April 2021: This family decided to sell the house they live in, to operate on their mother. What would cause a family to take such a drastic measure? Parkinson’s Disease! After 10 years of Parkinson’s Disease Dorys could not control her body. She trembled violently. Without graphic footage this story brings the reality and ugliness of Parkinson’s Disease and its effect on one family. It is an amazing story of suffering, sacrifice and love.
The month of April is Parkinson’s disease awareness month. Parkinson’s Disease is a chronic progressive neurodegenerative movement disorder and is one of the Neurological disorders which are the leading causes of disability globally (GBD Parkinson’s Collaborators 2016), Parkinson’s disease, discovered more than 200 years ago, is the fastest growing neurological disease in the world. There is still no cure. We urgently need a cure for this disease and better treatment for people like Dorys.
This story aims to demonstrate the reality of the disease for people who live in lower and middle income countries and the west too in some cases. The story is from Peru and is made by Christine Jeyachandran, amatuer youtuber. Christine, an Australian, was diagnosed with young onset Parkinson’s disease diagnosis at the age of 37 and lives in Peru. The deficit of services for Peruvians breaks her heart. She writes “Well, within minutes I was blown away by the family’s story. Despite not having my camera with me, I returned early from the beach to film the full story”
Christine started an association to help educate her community about Parkinson’s disease but she has contact with people all around Peru with the disease.
Please don’t let Dorys story be invisible. Her life and the life of her family matter and we need to let others know just how this. We need to END PARKINSON’S!
Christine Jeyachandran – Parkinson’s World Congress Ambassador 2022 & Founder of Activate Liga Contra el Parkinson (Peru)
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 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.
“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.
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’.
Ambassador of the World Parkinson Congress 2022
Blog: English and Spanish https://handstandforparkinsons.com
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.
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.
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?