Life living!

Featured in Spanish Blog – Translation here.

https://pdeparkinson.blogspot.com/2021/01/fuerza-y-determinacion.html

Para leer en espanol was al enlace arriba.

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’.

Christine Jeyachandran

Ambassador of the World Parkinson Congress 2022

Blog: English and Spanish https://handstandforparkinsons.com

Spanish website: https://activateparkinson.com

Youtube: Christine Jeya, https://www.youtube.com/c/ChristineJeya

Twitter: handstand for parkinson’s @christinejeya

Frequently Asked Questions

Welcome to my blog those who are new. People ask me a lot of questions but these are the ones that come up over and over again so this is a quick blog answering 5 questions.

  1. Were you a gymnast as a kid? Is that why you can do a handstand? I never did gymnastics as a kid but I did do handstands in the playground.
  1. Did your coach come back? (you have to watch Handstand for Parkinson’s to understand this question) My coach did come back after leaving me and it was pretty quick, as soon as I finished editing the video. It was more like a break but it was devastating at the time.
  1. Why did you do gymnastics? I had been watching my twins do gymnastics since they were 4 so the gymnastics facility was a location I knew well and the coach was my girls coach which made it easier for me to ask him to train me as I knew he had an adult class. There are no Parkinson’s disease physiotherapists or exercise classes where I live, so I was pretty desperate to find something to help my body move better. I knew that I needed accountability and a tough coach to push me along.  I didn’t know it was going to work so well at all but retrospectively one sees that balance, coordination and strength are features of gymnastics so it make sense. I do mainly physical preparation rather than tricks and it took 9 months before I tried a handstand.
  1. You must train every day for long periods of time? I started off with 45 minutes, 3 times a week and then I raised it to an hour and eventually 3 times a week, 2 hours a day.  Often I’d do an extra low key session on Saturdays. It is a solid commitment I think it’s doable and worth it.
  1.  Does your coach know anything about Parkinson’s disease? Is he trained? My coach didn’t know much about Parkinson’s disease, so I explained the basics. But he did have a friend who had had the disease and who he told me stories about. I gave him some things to read and he might have investigated further. I’d done a PD warrior Course as a patient in Australia so that gave me some good principles but the coach really did what he usually does with gymnasts making adjustments for sore knees etc and lowered his expectations. He seemed to have a good eye for what needed work.

If you have other questions ask in the comments or on twitter: https://twitter.com/christinejeya

My youtube channel: https://www.youtube.com/c/ChristineJeya

Featured in Podcast: When Life Gives you Parkinson’s

Thanks to Larry Gifford for interviewing me on his popular podcast When Life Gives you Parkinson’s. Follow the link and please share it.

https://omny.fm/shows/when-life-gives-you/even-patients-can-push-things-along?t=0s

“In this episode of When Life Gives You Parkinson’s, host Larry Gifford introduces you to Parkinson’s advocate Christine Jeyachandran. Christine is an Australian living in Peru with her family. They met in Japan at the World Parkinson Congress where she was a finalist in the video competition. Her video tracked her journey to learn gymnastics with PD and ultimately achieve a handstand. Now Christine brings hope, urgency and education to her Parkinson’s advocacy through her website and videos at www.handstandforparkinsons.com

Please take the time to listen. Several have said they appreciated it.

Apologies the picture isn’t a link

Newsletters and their importance – Noticias en Español.

Welcome to my blog those who are new. It is nice to have you journeying with me. I hope you enjoy or learn something here.

This is a newsletter I wrote recently in Spanish. I won’t translate it all but basically I am promoting everything that is happening in Actívate, the Parkinson’s group I created. Well, not much has happened because of Lockdown but nonetheless little things should be celebrated.

I studied community development and one thing you learn is you need to share the successes and promote your group in an ongoing way. It is nice for the participants to get mentioned and of course upcoming events and opportunities for their involvement in research are advertised.

I have included also for the Spanish speakers. If you have questions I can answer them and gradually I will tell these stories too in English.

Joy – A Poem

The raw grief of diagnosis slowly has ebbed away,
but living on, it visits from time to time, but never to stay.
But strangely there is joy that’s hard to explain.
not joy in trouble walking, not joy in aches and pains,
not joy in insomnia, I try not to complain
But there is joy in working hard despite my fears
There is joy in achieving goals though it takes years
There is joy in comforting others and in empathy
There is joy in sense of purpose and pure clarity
There is joy in fighting for others who don’t know how.
There is joy in others helping, I’m not alone now
Today whatever raw emotions catch me unaware,
I know the best is joy and I willingly will share

Fundraising Target reached! THANK-YOU

Thank-you for your donations for the World Parkinson Congress travel grants fundraiser: WPC for YOPD.

We have over $2500 in donations with a few donations sent directly to us, so hence the estimation as we have yet to send through the latter and with exchanges rates we will confirm later.

The grants are international but in the thank-you video attached we specifically mention helping Peruvians as they will be a priority for the funds I raised.

The 10 day challenge was fun and helped me keep exercising even though we were packing house and moving house.

Day 1: Ab workout

Day 2: Skipping and ribbon Dancing

Day 3: Gymnastics

Day 4: Bars at the Park

Day 5: Head standing and stretching

Day 6: Gymnastics (kip on floor video)

Day 7: Yoga and stretching

Day 8: Moving house – Packing and lifting boxes and suitcases. It was certainly draining even though not traditional exercise.

Day 9: Walking – Walked to the city and back plus suitcase walking in the afternoon.

Day 10: Cycling (indoors and out).

Thank-you again everyone for your support. Blessings

This is a short thank-you from the kids and I.

https://photos.app.goo.gl/SQn71WdMx1EAuowp8

I’m going to climb a mountain – Fundraiser…or plan B?

Well I had big plans for this fundraiser: I was going to climb a mountain but COVID19 means that after 6 months we’re still on lockdown in Peru. We are only supposed to go out for shopping. So no mountain climbing. So plan B….. but first what am I fundrasing for.

Going to World Parkisnon Congress last year CHANGED MY LIFE!

I have made a short video about it on facebook:
https://www.facebook.com/591502886/videos/10157825732897887/?extid=Zl9ANwhhjbO7NBGQ

It empowered me to reach out to help the Parkinson’s community in Peru. I’ve started a Parkinson’s association in my city and I’m educating my community about Parkinson’s, drawing on what I learned the World Parkinson’s Congress. I’d like to see others with Parkisnon’s to also be empowered to help their community here in South America and beyond. I’d probably not be doing what I am doing without the inspiring experience of being a part of the World Parkinson’s Congress. 

As you can imagine getting to go to such an international event is expensive, so we are raising funds travel grants to subsidize those in need. The congress is in June 2022 and this time it is unique because it will be in Barcelona in Spain. This is super exciting for Latino’s because it means that it will be translated or presented in Spanish as well as English.  This means it is the perfect opportunity to get Peruvians and other Spanish speakers along and empowered to come back and lead their communities. 

Please donate to the link:

https://www.worldpdcoalition.org/donations/donate.asp?id=19358

My aim is to raise $2,000 before my birthday on the 28th August

Thank-you in advance for your generosity. Every little bit counts.

No mountain climbing so what am I doing? What is plan B?

A 10-day physical challenge. I will be exercising everyday sharing a video daily via facebook. I’m a little behind in posting as I had a problem I’m trying to sort out with facebook. My next blog will explain the glitch but I’ll post the first video today.

Christine Jeyachandran

Ambassador of the World Parkinson 2022

Facebook has blocked me from using their fundraiser

I am having a fundraising for my birthday (28th of August) which is usally done through facebook fundraising but they won’t allow me to use their system because I live in Peru.

I wrote to Mark Zuckerberg an email similar to this:

I signed up in January to raise funds WPC for YOPD. The money goes directly to the World Parkisnon Congress (not to me) though it must be set up from my personal facebook account.

IT SEEMS STRANGE that I am not allowed to raise funds with facebook fundraising for my favourite charity? I went to the WPC facebook page and I can’t even donate? This fundraiser is for my birthday on August 28th. I’ll be 44.

If it was money just for a personal cause I’d understand but this fundraiser is part of a legitimate charity and you can find my profile has been on the website since January. https://wpc2022.org/page/wpc4yopd

I don’t get any money from the fundraising. I just want to help others get along as the World Parkinson’s Congress changed my life for the better.

I made a video about my story of combating parkinson’s by using gymnastics – it was one of the 12 finalists for the video competition. I have kept going ever since and now reach out to my community to help others by running classes and setting up an association.

I am already going to the WPC so this is to raise funds for others – especially my friends who can’t afford to go but I know they would benefit a lot. 

I hope Mark can resolve this.

Maybe we could get him to donate to the cause.
Please donate via this link in the interim: https://wpc2022.org/page/yopdfund


My WPC Video for the last WPC. Handstand for Parkinson’s
Christine Jeyachandran, Ambassador of the World Parkinson 2022

The initial response from facebook.

Radio Robbery – Driving in Peru Update

This needs to be read after the previous blog – 6 attempts to get Driver License in Peru!

http://handstandforparkinsons.com/2018/10/04/driver-license-experience-in-peru/

Many of you have read about my struggle to get my drivers license in Peru and I haven’t updated you on the follow up.

The first observation was that the 2nd or 3rd time I drove the car an incident happened that woke me up to the realities of the roads in Peru.

I was driving along a main road which had a side line that merged into my line. I saw a bus coming quickly and I let it in and continued. Before I knew it I heard honking and turned to see a male driver in car looking rather annoyed at me from the merge lane. He was about even with my back seat window and he was asking (not so politely) why I didn’t let him in.

I was stunned. I kept moving knowing he couldn’t get around me as I was ahead and I had the right of way as I was on the main road. He proceeded to drive around me and yell at me from the other side as we drove along. Such lack of knowledge of road rules surprised me. I realised that we were in a different world where logic wasn’t aligned with the road rules.

The road rules around the world are basically the same – we looked it up actually. In the drivers test the tester had said you are over the line “you have killed a pedestrian”. I was lined up perfectly with the said line. I got out of the car to check and said “I have been driving for 20 years in my country and I have never hit a pedestrian”. He said the rules are different here. Yup… no they are not! The road rules at least in theory are the same. Practice is another story.

So I learnt the Peruvian way of driving.

1. To get across an intersection you must put the nose of your car in or you’ll never get through and everyone behind you gets very angry.

2. Likewise use your horn at any slowness. That really got on my nerves.

3. You must pull your car within 3 centimeters of the car in front at the lights or someone will stick their car nose between yours and the other.

So driving in Peru was a little stressful but the nail in the coffin was the fact that our radio of the car got stolen from the car at the gymnastics facility twice. We got the car to help us get to gymnastics and school but it was clearly not the safest place to park.

There were a few other issues I won’t go into but driving a manual was hard work in stop-start traffic. So with sadness we decided to sell our little Hyundai. Her number plate was VXY, so I had nicknamed her Vexy from the word vexed and that is what it is like to drive in Peru.

Ironically I have this 10 year licence in Peru and I’m not driving. I’d love a little automatic old car some days (especially as we come out of lockdown) but we do fine with Taxi’s usually. I haven’t been in a car for 109 days as we live close enough to walk to many shops so the need is minimal.

It is far less stressful and though driving yourself might be cheaper, when you count the robbery costs and stress… I think we are better off.

Do I regret anything? No … I understand a lot more about corruption and feel like “walking a mile in Peruvian shoes” was good for me.

Newspaper Article: Getting Parkinson’s patients out of their homes

Quick note: Please subscribe to my blog to get new updates. Thank-you for reading and commenting too.

Usually activities shut down over Christmas/ new year but something in me said “Let’s start this group and keep the momentum going”. So we started in November and continued with meetings in December, January and February and March with Dr Karlos Lizarragas’s visit. It was a busy few months but it turned out to be a good decision because the week after the Doctors visit we all went into lockdown. I was grateful that I got to know the people who came and connect with them over the ‘summer break’. Now we can’t meet and it is day 108 of the lockdown and we’ve got at least a month to go and because many are elderly and at risk it will be some time before we can meet again.

This is a newspaper article that appeared in the CORREO newspaper the week Dr Karlo came. I have attached the link but have included a rough translation as the article in in Spanish. It might be old news but it reminds me to keep sending them messages of hope and encouragement by whatsapp or sms to my people here and since I didn’t translate this is earlier it is still new to most of you. Please note it is a loose translation and sounds a little strange but you can get the gist. 😉

This article is titled: “Those affected by Parkinson’s take on the challenge to to fight against Parkinson’s”

https://diariocorreo.pe/edicion/arequipa/afectados-por-enfermedad-asumen-reto-se-superar-parkinson-933641/

The Activate Association of Parkinson’s is growing and on Tuesday, March 3, they will receive the Arequipa neurologist Karlo Lizárraga Mendoza 03/01/2020 at 12:30

Last December, The Correo (newspaper) spread the encouraging message of Christine Jeyachandran, an evangelical Christian missionary, who manages well her symptoms in her body although it is affected by the disorder of the central nervous system. Three months later, her aim to create the Parkinson’s League – ‘Get Active'(Activate) is paying off with 26 people attended the last meeting. Christine, who has overcome the limitations of the disease through gym sessions, wishes her peers a similar experience. The first step, and perhaps the most difficult, has been to encourage this significant group of people of different ages to come along and not hide at homes. They are now the founding members of Actívate, and the next step will be to involve everyone in physical exercise as therapy.

Limitations. Parkinson is terrible: the physical limitations, the inability to speak loud and clear, tremors, dragging feet, drooling, diminished facial expression, the lack of balance, the frustration of not walking well, all this causes a heavy load of vulnerability that you carry to everywhere” says Christine to describe the diagnosis of parkinson’s. Activate began on November 3 with 5 members supported by two professionals from the Honorio Delgado Espinoza hospital, one of them is the psychologist Rita Ames who has strengthened Christine’s knowledge of group management and emotions of those affected by the disease.

Since then until February, they have met three times and each time the number of members has increased, reaching 26 people who have left isolation and are willing to continue on the path of integrating and growing the League, eager to achieve control of your movements. “Affected people do not have to be embarrassed in our meetings. You don’t have to explain your symptoms to anyone here because we understand each other. The reason for our name, Get active (Activate yourself), is that we want to do gymnastics, but we haven’t started for various reasons, but the first thing is that they came out of hiding, “says the promoter of the organization excitedly. In these sessions, with the help of the psychologist Rita Ames, everyone can share their ideas, some very shy and others less, they tell their stories, tears are not lacking because they finally have people by their side who understand them.

TO THE FAMILY. The meetings are focused on educating people and their families about the disease and about exercises that can help overcome their symptoms to improve their quality of life. Rita Ames indicates that many suffer from depression and apathy but they are explained how the Activate League will work, that is, with their participation. They find it hard to stop focusing on their weaknesses, but little by little they have shown hope in their eyes. One of the participants, Juan, acknowledged that at first he was only interested in reinforcing his depression due to the disease and its symptoms, but now he maintains the hope of engaging in physical exercises as a means of reducing them and thus improving his quality of life.

MUCH FAITH. “Telling PD patients they have a movement disorder and leaving it at that is a self-fulfilling prophecy. It would be better to tell them, “You have a disorder in which the motivation for movement is significantly impaired, along with movement . But by knowing that, and using conscious mental effort, you may be able to override the impairment to a significant degree” says Canadian psychiatrist Norman Doidge, and members of the Activate League have begun to believe it.