Many ask me questions about the new developments that are coming out to treat parkinson’s disease. While I know a lot sometimes I find it hard to explain so here is a great video from Dr Simon Lewis, from University of Sydney, who I met at the World Parkinson’s Congress. He explains everything you might need to know but it is 45 minutes long because it isn’t a simple question to answer.
I think it is worthwhile watching if you make the time. Please share with others and give it a like.
This is a poem I wrote that many have asked me to share. It is inspired by “The upside-Down Kingdom” by Cheryl Stinchcomb which appears in the new book “Disability in Ministry” by D Deuel and Nathan John.
It is a great book which I’ll be reviewing soon on the blog.
Downside up God
The world loves the healthy and strong,
but the Bible teaches that God gives strength to the weak.
The world loves the beautiful,
but the Bible says that God looks at the heart.
The world loves the athletic and fast ones,
but the Bible teaches that training in Godliness is of more value.
The world loves the happy and lucky,
but the Bible says God is near to the broken-hearted and saves the crushed in spirit.
The world loves the good and wise,
but the Bible teaches that no one is good and wisdom begins with the fear of God.
The world loves those who appear powerful and have it together,
but the Bible says to boast about our weaknesses so God’s power shines through us.
The world loves the comforts of life,
but the Bible says comfort others with the comfort you’ve received in your suffering.
The world loves money and thinks it will solve all our problems,
but the Bible teaches us to be content in every circumstance, with little or a lot.
The world loves to be in control
but the Bible says to surrender to a loving God
The world loves the powerful,
but the Bible says God blesses the meek.
The world loves to define our values,
but the Bible teaches that we are in the world but not of the world.
Choose today who you will serve,
As for me and my house, we will serve the Lord.
Mathew 5: 5, 2 Corinthians 12: 9-10, 1 Tim 4 :8, 1 Samuel 6:7, Phil 4:12, 2 Corinthians 1: 3-7, 2 Corinthians 12: 9 -10, 2 Corinthians 4, John 17:14-19, Joshua 24:15
It’s been amazing to be here in Australia but the hardest thing has been not having my regular schedule of gymnastics classes three times a week for 2 hours each. I do gymnastics here and the people are lovely but it’s a very different approach to what I’m used to as it is mainly x-gymnasts who are advanced. It’s not quite the same. That said I’ve been getting lots of helpful advice from pilates and physiotherapist about how to improve different things that are missing from my workouts in Peru. So while I am working out, it lacks intensity because I do it at home or when travelling. I’m losing strength and gaining weight from all the good Aussie food. This next few weeks are full of physiotherapy visits so this should help. It is now less than a month until we are home and I’ll be back at it.
Here is me working on my handstand, actually trying to get warm enough to get in the water. It looks warm but it is winter here and it was freezing.
The World Parkinson’s Congress in Japan was amazing and life changing. Researcher from around the world joined with patients and carers to hear and share about the latest scientific developments and support each other in this journey called Parkinson’s disease.
A reception for Australian’s got me started on networking. There were hundreds of Aussies and over 60 countries represented. I was the only one from Peru.
I heard talks about advocacy, diet, the best exercise, depression/ apathy and anxiety and coping with early onset Parkinson’s with family/work. Some scientific talks that went over my head and others I’m reviewing at home to remember. I did yoga, a dance class and tango which was so empowering.
I met people from all around the world and I especially tried to connect with Latinos and Spanish people and encouraged people to come visit us in Peru and maybe volunteer there.
I told everyone about how tough it is for sufferers in PERU but was so excited to hear next time it will be in Barcelona so that means Peruvians can attend as the conference will be translated into Spanish as well.
My video did not win – but thanks again to everyone who voted nonetheless. The winning video was professional, one of four entries by the same person and about a legendary campaigner/PWP in the Parkinson’s world who had passed away suddenly. A worthy winner indeed.
It was amazing to see how different the symptoms were around us and that there must have been over 200 people under 55 with Parkinson’s at the conference. Over 2000 people attended from 60 countries.
I loved it so much that I can’t wait for World Parkinson’s Congress in 2022. #WPC2022
Knowing Spanish, I hope I might help in some way with organisation as it is run by a small NGO and as you can imagine it is a mammoth undertaking and they need volunteers to help run it. Maybe you could come and volunteer too.
In my city people hide the disease but there is a Parkinson’s Association in Lima, so I hopped on a plane to see who I could meet. Well, providence stepped in… before I even got out of Arequipa I met a lady (and her son) whose father had Parkinson’s disease. I was able to chat with her about everything related and she happens to work in health insurance and can use her connections to find patients. She stated as we pulled into Lima “ Next year we’ll celebrate in Arequipa – even better than LIma”.
What a great start to my trip.
World Parkinson’s day is celebrated by people with Parkinson’s Disease and their families all around the world on 11th of April. In Lima there were a hundred people in attendance. There was a special guest, Carlos Alvarez, a comedian whose mother had died from the disease recently. He is helping get media attention and he’s already done that by making a short show about his experience and introducing some people with Parkinson’s and the issues they face.
I also told my story of getting Parkinson’s disease and how important exercise has been for me. I told them about being an unexpected gymnast and I really connected with the audience who smiled or laughed at my jokes. There was even one lady who doesn’t know what rhetorical questions are but that made it fun too. I was able to make many new friends and interviewed about 11 people in person in Lima. The night ended with music and dancing which is a lot of fun. I’m very excited to see the future of the Association and how it’s growing and educating about parkinson’s disease.
Photos speak louder than words so enjoy.
To go along with the video I have renamed the blog “Handstand for Parkinson’s” and the website is www.handstandforparkinsons.com. I hope this won’t cause too much confusion.
The other news is that I am preparing a Poster “Living with Parkinson’s in Peru”. So I am super busy trying to interview people with the disease and write up their stories and creating charts. I have never done something like this and with the time limit so close (June). I am a bit overwhelmed and have ideas that I am struggling to put into action.
Thanks everyone for your votes and support with the video “Handstanding for Parkinson’s Disease”. I have been so blessed by comments and with votes. The winner isn’t announced until June, but voting has finished.
We’re preparing for our 3 month visit to Australia late May to August which is exciting too.
The fun news is that I am working on a follow-up video called “Before and After” about how my coordination, movement balance and strength improved by doing gymnastics to combat Parkinson’s. It is half done so watch this space. I am relatively new to video editing so it is taking me time to learn but I’m advancing little by little.
Also I am back at the gym training pretty hard but like pride before the fall my handstand has gone backwards. Firstly my coach prefers that I don’t use a wall for support and secondly I am still frightened and lack consistency in my style. I need to keep practicing! Everyone has these valleys or plateaus but I am working hard. My next video will include some new tricks I am working on… of course I’m not looking like a pro but I’m moving forward nonetheless. April marks the first anniversary of my time in the gym.
I really love TED talks and I found a book on a friend’s shelf “How to deliver a TED talk”. I quickly asked to borrow it. I have always enjoyed public speaking and inspired by the book I drafted a talk about “an idea worth spreading” which is the catchphrase of TED. I’m giving a talk next week so it is perfect timing.
As I kept reading I now see many changes that need to be made, but I knew If I didn’t draft it today I would forget all the good advice from the book.
The first tip that stood out was you need a catchphrase, summarising your main idea(s) ideally short 3-12 words, action centric and include word repetition, rhythm or even poetry. Not all are possible at once but it should be repeated various times.
The second tip I really liked was that you need to catch your audience’s attention in the first 30 seconds. If not, it’s really hard later. There are extensive list of how to do this but I won’t give it all away (Jeremey Donovan wouldn’t like that)
There are lots of tips to fine tune my talk but for me this time the stakes are not as high as doing a real TED talk. But this leads to the next tip I am following already. You need lots of real life practice to get good at public speaking. Without this it is unlikely you’ll get on TED. But that said it is not about being an expert speaker, but a passionate expert in your particular area.
You can nominate yourself to be on TED but if others do, it is even better.
I am excited now to improve my public speaking skills so will continue to take opportunities to share “my idea worth sharing” (that’s another blog post).
I’d love share in your community or church group or Parkinson’s group. I’ll be in Australia from June to August. Other locations could be harder but you never know, I love to travel.
I better get back to writing my speech for World Parkinson’s Day on 11th April which will be in Spanish. This is no easy task in another language. I’ll need even longer to practice and memorise this one. I better get to work.
PS. I am attempting to move all media to name: Handstand for Parkinson’s (often without apostrophe). I am told this is better – uniformity. A work in progress as it is a bit mixed.
https://www.youtube.com/watch?v=h1B6kUgN6WQ&t=6s
My video has been chosen as one of the 12 finalists for the World Parkinson’s Congress. I am elated. There are 2 winners. One chosen by judges and one by people’s choice by popular vote. So I have to encourage you all to vote online in the link (voting has now finished) and encourage others to vote too. You need use your email address.
Christine Allison Jeyachandran- Mi video sobre aprendiendo parada manos/ gimnasia está concursando en el congreso mundial de Parkinson, entren en el link y voten por mi! 😁 He sido elijo en los finalistas (12)…. Muy Feliz!!!!!!!!!!!!!! Los intrusiones son en ingles pero dice, votar una vez no más. El nombre de mi video es Hand Standing for Parkinson’s Disease by Christine Jeyachandran. Pon su nombre apellido y email y buscar mi video para votar (Ya termino votacion). Gracias y animar a otros votar. Compartir por favor
Spanish first today then English below.
This is Sammy photo bombing me. Not related but fun.
Este es el enlace para recaudar fondos para el proyecto (ya borre). Está en fase de desarrollo en este momento. Estoy tratando de encontrar pacientes e invito a reunirme regularmente y buscando socios con los que trabajar, como la asociación de Parkinson de PERU (que está muy interesada en trabajar con nosotros).
El objetivo es encontrar voluntarios internacionales y nacionales y fondos para venir a enseñar / demostrar las mejores prácticas en el tratamiento de la enfermedad de Parkinson, la educación sobre la enfermedad y el ejercicio.
El proyecto también examinará a cada nuevo contacto sobre sus experiencias con Parkinson en PERÚ. A continuación se muestra un borrador del plan del proyecto, pero las cosas dependerán de las encuestas y los recursos disponibles.
Objetivos del proyecto: Educación para la enfermedad de Parkinson en Perú
Parte 1: Educar a profesionales de la salud, fisioterapeuta, patólogo del habla. Las enfermeras y otros profesionales, como trabajadores sociales, nutricionistas, educadores de la salud y más jóvenes / seleccionados sufren o miembros de la familia capaces de ayudar con la educación de otros.
¿Cómo? Invite a extranjeros o expertos locales a capacitar al grupo principal / Capacitación interactiva y práctica / Pruebas / enseñar a un vecino.
Día 1- Enfermedad de Parkinson en profundidad: Dopamina / síntomas / Drogas vs Ejercicio / mitos / cirugía
Día 2- Discurso / Dieta / Depresión / Importancia de las reuniones / Organización /
Planificación de lecciones de planificación y libros de imágenes
Día 3/4 Entrene a los fisioterapeutas / baile u otros en PD warrior u otro programa similar
Parte 2: Día 5/6 – Clínicas en Lima: Enseñe nuevamente 1-4 en forma abreviada.
Días 7/8 (después del domingo) Trujillo regional y Arequipa – 4 capacitadores (incluyendo fisio / habla / nutricionista) van a cada ciudad.
Es un borrador del plan, pero como la gente me lo ha pedido, me parece bueno compartirlo. Del mismo modo, si deseamos ayuda, necesitamos compartir un plan claro, incluso si es necesario ajustarlo.
Si conoces a alguien que pueda ayudar, los expertos de Parkinson pueden compartir. Que puedan ofrecerse a ser voluntarios o hacer incluso más que en el plan. DREAM soñar grande … y trabajar duro en el interum.
This is the link to to project fundraiser (no deleted as it was old). It is in development stage right now. I am trying to find patients and invite to meet regularly and looking for partners to work with too like the Parkinson’s association of PERU (who are super keen to work with us).
The aim is to find international and national volunteers and funding to come and teach/ demonstrate best practices in Parkinson’s disease treatment, disease education and exercise.
The project will also survey each new contact on their experiences with Parkinson’s in PERU. Below is a draft of the project plan but things will depend on survey’s and resources available.
Project Aims: Education for the disease of Parkinson’s in Peru
Part 1: Educate health professionals, physiotherapist, speech pathologist. Nurses and other professionals, like social workers, nutritionist, health Educators and younger/ selected suffers or family member able to help with education of others.
How? Invite foreigners or local experts to train the core group/ Interactive and practical training/ Quizzes/ teach a neighbour.
It is a draft plan but since people have asked I thought it good to share. Likewise if we want help we need to share a clear plan, even if it needs adjusting.
If you know anyone who could help – Parkinson’s experts then please share. Maybe they can offer to volunteer or do more than in the plan even. Lets DREAM big…..and work hard in the interim.
UPDATE; WE STILL HAVE THESE AIMS TO EDUCATE AND HAVE CONFERENCES BUT WE’RE DOING IT ON A SMALLER SCALE AND ON PAUSE BECAUSE OF CORONA
If you knew that in the future you’d be unable to walk properly, you’d be motivated to do whatever you could now.
This year I did the ‘Race to the Rocks’ at our mission organization annual conference. It is 7.2km on the beach so it’s quite an effort, I wasn’t even sure I was going to finish it. I left first and was last back but I finished the race. It is also important as a parent to be an example of participation even if it is not your thing (running is not my thing so I mainly walked). Most people prefer to sleep in, me too actually, but I might not be able to do it one day so I should do it while I can. That doesn’t mean to say it was easy because I struggle walking and after the race I was quite exhausted but I finished it.
This last Sunday we all went in a set of races: I went in the family category(3km) and Samuel ran ahead with a friends family. The twins did 4.5km and David 10km. I walked most of the way even though it was a ‘run’. I am thankful I could do it and enjoy it.
“But you, keep your head in all situations, endure hardship, do the work of an evangelist, discharge all the duties of your ministry.
6 For I am already being poured out like a drink offering, and the time for my departure is near. 7 I have fought the good fight, I have finished the race, I have kept the faith.” 2 Timothy 4: 5-7S
Si supieras que en el futuro no podrías caminar correctamente, estarías motivado para hacer lo que pudieras ahora.
Este año hice la “Carrera a las rocas” en la conferencia anual de nuestra organización misionera. Hay 7,2 kilómetros en la playa, así que es un gran esfuerzo, ni siquiera estaba seguro de que lo iba a terminar. Salí primero y llegue la última vez pero terminé la carrera. También es importante como padre ser un ejemplo de participación, incluso si no es lo tuyo (correr no es lo mío, así que principalmente caminé). La mayoría de la gente prefiere dormir, yo también en realidad, pero tal vez no pueda hacerlo un día, así que debería hacerlo mientras pueda. Eso no quiere decir que fue fácil porque lucho para caminar y después de la carrera estaba bastante agotado, pero lo terminé.
El domingo pasado, todos fuimos a un conjunto de carreras: entré en la categoría familiar (3 km) y Samuel corrió con una familia de amigos. Los mellizas hicieron 4.5km y David 10km. Caminé la mayor parte del camino a pesar de que era una “carrera”. Estoy agradecida de poder hacerlo y disfrutarlo.
