Parkinson’s is like a rope climb. You think you can’t do it but you hold on for dear life. But you start to climb, it aches, the rope burns. You keep trying. You learn new techniques. Little by little you move up and feel a sense of achievement. But always leave energy for the descent.
The process of starting the Parkinson’s association in my city is taking time. That is the way life is here in Peru as there is always paperwork and permissions and more paperwork to be done. But because of this delay I organised a more intimate meeting with a handful of people that I know to see if I could build up the trust between us.
Edith (name changed) is a retired teacher who I have heard speak various times and always admired as she is so interactive and creative in the way she presents. I invited a group of pastor’s wives to my home, including Edith, for a time to encourage one another and before long she mentioned she too has Parkinson’s disease. She didn’t know that exercise helps slow the advance of the disease. It was a surprise, but it shouldn’t be as my research shows that people with Parkinson’s (PWP) in Peru don’t have a clear understanding of how exercise rebuilds the nerve connections again and practice and movement help with coordination and walking. To make a long story short it is exciting as Edith helped me host the first Parkinson’s association meeting in my home. Her talk were real blessing to others.
Another member is a lawyer Pablo (name changed) whose wife I know through my current circle. He is very capable in helping me with the paperwork for the association and also helping set it up legally. His story is that he had been told he ‘shouldn’t dance or exert himself too much’. He actually struggled with this advice as he loved dancing but had to give it up. But scientific studies say the exact opposite. Dancing is an excellent form of exercise as the music helps move people too. Scientific studies say that while stretching is good but one needs to also get out of breath, – which in Spanish is ‘agitarse’ – like agitate yourself a little. Dancing is great for Parkinson’s but so are running, walking, boxing, yoga and many other forms of exercise. They help with movement and prevent rapid disease progression. Exercise also helps with depression, and social interaction with exercise is great too.
But this man has had the disease over 10 years, still works full time, and is now accustomed to inactivity. I have heard it said that people with Parkinson’s are resistant to exercise. This sounds strange but depression and apathy are also common and affect motivation.
So pray for this new friend who wants to help with the association that he’ll have the time and energy to help and that also he can find the motivation to get exercising. I believe he can do it… he just doesn’t know it yet. His wife told me how amazingly smart he is and I don’t doubt it but sadly sometimes Parkinson’s affects so many parts of one’s life and this affects one’s confidence.
It may all just take a little longer than I had planned but we had a lovely time together with just 5 of us in total. I hope we can integrate others soon.
You might have seen me walking around WPC with a Peruvian beanie (warm) hat on. There was reason to my madness: I was trying to connect with people from South America but there were very few of them. But then I heard about the legendary “Nacho Mata” – But I couldn’t find Nacho despite messaging him, so on went the hat and he spotted me easily leaving a session.
Dr Mata had a huge interest in Peru, where I live, as his work is in genetic studies various countries in South America. He has found that Latinos have very little representation in the genetic studies done already so if cures or treatment was found it would be likely to benefit mainly European forms of Parkinson’s and not others. Nacho, originally from Spain, he decided to study the South American variant of parkinson.
When we met at the WPC conference I asked if he could speak with the Peruvian Parkinson’s Association about Genetics (but basic level only). He willingly agreed and the association booked a hall and organised the event within just over a months notice.
This talk was a great “Introduction to Parkinson’s Genetics” which should be repeated at WPC22. It explained briefly causes and basics Parkinson’s and even used a Peruvian food analogy to keep them listening. Everyone should know to complement a Peruvian it is best to say “I love _____ (specific food). Smart! He had them hungry for more (pun intended).
Only 20% of persons have a hereditary form of Parkinson’s and he encouraged PWP to enroll in genetic studies. Association should also raise funds for research too, as that is how Nacho got his start in Parkinson’s research – the location Parkinson’s Association where he lived gave him a scholarship to do Parkinson’s research. He talks as if they’re his aunts and uncles and is so grateful to them.
So thank-you to the World Parkinson’s Congress for making the connection possible. Interestingly enough through Nachos visit I have met several young neurologists who are passionate about helping patients. One even stopped me in the hall at a medical conference Nacho was teaching at and said “thanked you for coming and inspiring me to keep working in this area” as I’d shared briefly what it was like for People With Parkinson’s (PWP) in Peru. And how do I know ? I know because I interviewed 28 people so I could present a poster on the topic at WPC2019. Thanks for inspiring me to take their story to the world.
I also had one young neurologist ask what was needed in Parkinson’s research. I pointed him to the patients ideas that came from WPC poster. I don’t know if he’ll do that topic but he’s more aware now and he wants to help organise a Parkinson’s conference next year for health professions and patients. Anyone else want to come and help us? I’ll take you out for same great Peruvian dish like “Lomo Saltado”.
Lastly I met very innovative and well read twin doctors – One is a neurologist and the other is finishing rehabilitation speciality and they want to start a parkinson’s Centre in Lima. Yes! They’ve a huge heart to see things done well in Peru and I hope I can partner with them to meet their dream.
These 3 doctors have confirmed that together we are coming to WPC2022 – Go team Peru! From 1 in 2019 to 4 at a minimum in 2022.
Thank-you Nacho for giving up your time to share your knowledge in Peru.
Disability in Mission – the Churches Hidden Treasure, Edited by David C Deuel and Nathan G John
“Should you be going back to the mission field, considering your condition?” This is the question often asked of me. I was diagnosed 6 years ago on the mission field with Parkinson’s Disease at the premature age of 37. So when I found this book, I’d already been exploring its themes. But new insights came page by page through the wisdom and experience of the writers.
The point of the book is illustrated by the true story of a deacon, in the early church, burned to death because of his actions.
“Lawrence …. was ordered to bring the treasures of the church before the emperor. He collected all the poor, the sick, the lame, the elderly and disabled people he could find. Took them to the emperor and said ‘See, here are the treasures of the Church’.
The book links Biblical examples of weakness and treasure. God gives Paul strength to shine in darkness to display the face of Christ. Likewise, God says, “I will give you hidden treasures, riches stored in dark places, so that you may know that I am the LORD” (Isa 45). Paul celebrates his weakness and fragility, and the stories of the book reveal how God is glorified in the weaknesses of other humble servants.
Joni Ereckson Tada, who writes the forward, knows firsthand the ministry God brought to her because of her quadriplegia. Not easy but fruitful. The previously untold stories in the book reflect that ‘the parts of the body that seem to be weaker are indispensable’ (1 Cor 12:22). Sadly, we don’t often value every part of the body of Christ. As Nathan Johns writes:
“Often society assumes the worst about people with disabilities. They are considered as weak. Yet each of the powerful testimonies here affirms how God chooses weak people, equips them powerfully by his grace, and works through them” (and) “creatively beyond what we could imagine”.
We are all made in God’s image, each of us is loved by God and is used for his purpose.
Without giving away all the stories nor Bible references, I liked the story of a down syndrome child born to missionaries in Indonesia. In this society, and many others, they believe that a disability is the result of a curse, generational sin, or divine judgement. This child became an example of hope. They saw how this child with downs was loved and encouraged to reach her full potential, and it gave local mothers hope for their children who were different. The position of the child’s mother changed as her suffering meant “Indonesians now perceived me as being more approachable….shared weakness was like a bridge”. The book tells of people watching disabled persons or their carers and getting new perspectives on their own situation. Even being present and united in weakness can encourage others and challenge the status quo. Others’ lives have changed completely like the editor Nathan John’s, whose daughter’s disability, inspired him to coordinate community disability services all over India.
Many disabled people serve God by teaching and preaching, others vocationally and others as disability advocates. Seeing a person worshipping God in spite of their problems shows their love for God, and people start to ask questions like: “If God can give joy to the quadriplegic then I want to know more” (of Joni Erekcon Tada). Many know that life is easier in the west and think ‘yet they are here serving my people’. This speaks volumes.
God used beatings, stonings, shipwrecks and imprisonment and a thorn in Paul’s side to keep him humble and dependent on him. All in missions need to depend on God whatever the situation.
On a practical side, when disability is present we need to evaluate carefully on a case by case basis the access to needed support services, regarding health or emotional services and practicalities. Extra costs don’t need to prevent service, but prayer is needed. My mission has evaluated my situation and approved me for service. So I’m excited to be back in Peru and love reaching out to people I’d never have thought to serve.
My disease has given me a chance to speak in many meetings and churches and my videos that tell my story have been seen by thousands of people, many who say ‘you are inspiring’.
I’m just following God’s call and I’m blown away as I see how God turns weakness to his strength. It’s not easy but I hope others inspired by the book will serve God, disabled or not. I loved the book and highly recommend it to anyone even if you don’t know disabled people. I pray it touches you as it did me.
Christine Jeyachandran serves with her husband David and kids in Peru with student and women’s ministry and more recently with people with Parkinson’s Disease. Here video Handstand for Parkinson’s was a finalist for the World Parkinson’s Congress video competition:
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.
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.
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.
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