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Parkinson’s

En Periódico Online – Encuentro

I am in the newspaper again to educate society that exercise is so important to improve parkinson’s symptoms and improve quality of life. Estoy en el periódico otra vez. Todo para educar la sociedad sobre la enfermedad de Parkinson: El ejercicio reduce los síntomas y por lo tanto mejora la calidad de vida. Por favor poner comentarios en “Encuentro”. Gracias
Link to Newspaper: http://encuentro.pe/deportes/la-gimnasia-artistica-como-terapia-del-parkinson/

What is your strength or talent?

That may seem a strange question to use in a Parkinson’s association meeting. But that what I asked is very strategic. These people have parkinson! They have plenty of weaknesses. They are used to people asking them about symptoms and many suffer from depression, anxiety and lack of motivation. It is part of the disease though everyone is affected differently do not everyone has it.

The other reason I use such an approach is because I did a Masters in Community Development which is an aspect of social work and international development which approaches development from a different perspective. The role of the community development worker is to help the people themselves. 

One of the key methods is  asset-based development. Instead of going in and asking ‘what do you need’ or condensing statements or questions about their situation they look at the strengths they have. Helping people find their strengths means helping them see their worth and see how that could help each other. That is one of my aims with Activate – the Liga of Parkinson’s en Arequipa. 

I also wanted to avoid the tearful diagnosis stories this meeting and keep it more positive. Not to say we won’t do these stories but not everytime we meet. Instead we started with singing, actions and dancing to a children’s song with a good latino rhythm. This helped everyone loosen up and have a bit of fun. 

Feeling useful and valued brings people joy and my strategy is to get people involved in running the Liga. Let’s be honest it is a lot of work alone so having help will lighten the load too especially as the people get the hang of what is involved. Family of the people with 

Parkinson’s are also invited to help out too. 

We are hoping to start some sort of exercise classes for those interested so I asked if people could help find a location and teachers and or funding or the user pays. It could take some time. 

We also had life size person outline on paper and we had everyone yell  their symptoms, and we put up the labels on the body of where they related to.  They enjoyed being the experts on the disease as we of people learn about symptoms others have. 

We had about 16 people with Parkinson’s plus family. I have 42 contacts with Parkinson’s now and the Doctor just rang to say she has more people wanting to come so we a have penciled in the 11th of February for the next meeting in the same venue to keep things moving.

In all, exciting meeting and we hope and pray the enthusiasm continue. 

A runner? Not I!

I AM NOT a RUNNER but today I ran/walked 7km in 58 minutes. Mindpower is the key. Last year I did the same distance in 1 hour and 30 minutes y so that is a 32 minute improvement. In 2014 I did the same distance in 1 and 10 minutes. So from my PB I improved 12 minutes.

How? Well it is not training, that is for sure. It was mind over matter. I figured if I could achieve my handstand and climb a rope in gymnastics then I could push myself a bit harder with running too.

So instead of giving up. I run then I walked and then ran then walked and so on until I got to the end and I totally surprised myself. I was amazed! I am now determined should my knees hold out to improve my time next January… not sure what to aim for but if I try training running, that has got to help in the least.

In the Newspaper – En el periodico

En Español abajo.

What a surprise? I was interviewed for a newspaper and today when I found out it was published we rushed to buy it, looked through all of it and started to think it must have been yesterdays paper. No, it was a full backpage. Amazing!

So thankful for the connections I am making to get this far. A person with Parkinson’s introduced me to the journalist and because she already knew of his struggle she was already sold on helping us out and wants to continue to do so.

By chance I ran into the family at the shops just now and was able to say thank you in person. Juan reiterated that Nelly was willing to write more stories. To which I replied “Yes! I am hoping your story will be next as I know you are a going to improve a lot right?” He smiled sheepishly. Let’s hope and pray! He is a great guy with a lovely family.

I have various friends helping with editing and other tasks which helps so much. It takes a village really. Thank you Josue, Ines, Noelia, Leydey, Yoselyn y David, and my kids. Hoping for more helpers soon. Any volunteers

The article is in Spanish but it explains about starting the Parkinson Association in my city, my exercise and the video I made which documents my gymnastics program which was shortlisted for the #wpc19 video competition.

En Español

¿Qué sorpresa? Fui entrevistado para un periódico hoy, cuando descubrí que estaba publicado, nos apresuramos a comprarlo. Lo revisamos todo y comenzamos a pensar que debía haber sido el periodico de ayer. Pero era una página detrás. ¡Increíble!

Estoy muy agradecido por las conexiones que me ayudaron a educar sobre la enfermedad de parkinson. Juan, un amigo con Parkinson, que me presentó al periodista, Nelly. Porque ella ya subia de la enfermedad de Juan, ya estaba convencida de ayudarnos y quiere continuar haciéndolo.

Por casualidad me encontré con Juan y su familia en las tiendas el mismo dia y pude agradecerles en persona. Juan reiteró que Nelly estaba dispuesta a escribir más historias. A lo que respondí: “¡Sí! Espero que tu historia sea la próxima, ya que sé que vas a mejorar mucho, ¿Verdad?” Él sonrió tímidamente. ¡Estoy orando! Son una linda familia.

Tengo varios amigos que ayudan con la edición y otras tareas que ayudan mucho. Realmente se necesita un pueblo. Gracias a Josue, Ines, Noelia, Leydey, Yoselyn, David y mis hijos. Esperando más ayudantes pronto.¿Quienes quiere involucrarse?

Los trabajos sean administrativo, diseño gráfico, buscando aliados en hospitales y lugar para clases etc.

El artículo está en español, pero explica acerca de cómo iniciar la Asociación Parkinson en mi ciudad, mi ejercicio y el video que hice que documenta mi programa de gimnasia que fue seleccionado para la competencia de videos en el congreso mundial de parkinson #wpc19.

https://diariocorreo.pe/edicion/arequipa/como-superar-el-parkinson-consejos-de-una-paciente-que-vencio-las-dificultades-928439/?ref=dcr

Starting the Parkinson’s Association in Arequipa

Speaking at a Lima event of the Parkinson’s Association

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. 

My first online speaking engagement

I have been invited to speak at a worldwide online summit (conference called INSIGHT into Parkinson’s 2020. I am honoured and have been thinking about what could encourage others with Parkinson’s Disease. I am preparing and want to practice soon. Exciting!

My photo and profile appears on the speakers list.

I even got invited to another conference to speak via LinkedIn but I think they just do that as a marketing tool to get people along to the conference related to Parkinson’s. Plus the email called me DR Christine Jeyachandran so as you know I am not a Doctor, so I don’t think I can live up to those expectations.

But the INSIGHT Summit is for real. I met Mel, (Melissa McConaughy) the event founder in 2016 when I signed up to do training for Parkinson’s Warrior. This is a set of exercises that help improvement of People with Parkinson’s (PWP) and I bumped into Mel again in Japan at the World Parkinson’s Congress, and she invited me to be a part of Insight 2020.

I have become an advocate for exercise which is something I would never have imagined doing. I just see so many benefits for myself and for others, so I can’t help but tell everyone how it has helped me. I won’t explain all my improvements here but recently my coach mentioned my posture had improved which is something I had not realised. It is nice to make progress. I still would like to make a before and after video about taking up gymnastics to fight the Parkinson’s disease.

Anyone interested in attending the INSIGHT Conference online can follow the link. All tickets are donations to Parkinson’s Research. https://www.insightintopd.com/speakers/

Christine’s Video Update

October 2019

Many have been asking how I am going with my gymnastics. It is not easy but I am still at it and I am enjoying trying new things. Thanks to everyone involved in the video.

Visiting Parkinson’s Geneticist – Dr Nacho Mata

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” – Book Review

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:

https://youtu.be/h1B6kUgN6WQ

New treatment developments for Parkinson’s Disease

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.