Life living!

Travel Tips (For People with Parkinson’s and regular folk too)

I have lived overseas for over 10 years and I am a seasoned traveller. These tips come from experiences I had and there is a story behind each one. We don’t have space for each story but trust me, I have your best interests at heart:

  • Buy lightweight luggage to ease the load.
  • Always have a handbag attached to you with meds, water, tissues, masks, glasses, wallet and passport. This bag maybe additional to your hand luggage as getting things in and out of the overhead compartments is very hard on the flight.  
  • Don’t fill your suitcase or hand luggage – leave space to buy something or receive a gift or take a gift for someone
  • Travel with others for support if you can
  • Arrive a day or two early, to rest before the event. 
  • Book connecting flights if you can, 3 hours between, or longer if unconnected
  • Always arrive 3 hours before your flight at your airport  
  • Ask for a wheelchair at airport (if you have Parkinson’s) in case your meds are off, the immigration line can be a killer – snaking around for hours. 
  • Carry a spare set of clothes in your hand luggage – flight delays, spills, disasters, either way it’s nice to have it handy. 
  • Expect medication issues – My meds don’t work well if I slept poorly 
  • Pack extra medications, several places in different bags
  • Use comfortable clothes for cold flights, but layers that you can peel off as needed. I find airports and flights vary greatly in temperature. One minute you are freezing the next you are sweating. 
  • Wear plants without a belts for simplicity and slip on shoes that are worn in
  • Ask a fellow passenger for help, especially lifting bags up or pushing the compartment closed. 
  • Google account etc- cell backup with someone you trust –  I had trouble with this but having your passwords on a program like Lass Pass can help you if you have problems with authentication

I have many other tips but this is a starting point. Safe travels!

The World Parkinson’s Congress is almost here

It has been 3.5 years in the making. I became an Ambassador in February 2020 and we’ve met bi – monthly with the ambassadors ever since.  So it’s surreal that the congress is finally a reality. So much work has gone into it and there are over 3000 people registered. There is still time to register and or sponsor the event so never fear.

The 6th World Parkinson Congress (WPC 2023) will be held in Barcelona, Spain from July 4 – 7, 2023. Everyone in the community who is touched by Parkinson’s, whether a researcher, physician, family member, clinician, nurse, or rehab specialist is welcome to attend the WPC 2023. World Parkinson Congresses are 100% inclusive scientific events.

WPC 2023 will be taking place at the International Barcelona Convention Center at Plaça de Willy Brandt, 11-14, Barcelona, Spain 08019. This location is convenient to the subway system and hotels that will have rooms for delegates.

Where to find me at the congress including 3 speaking opportunities:

  1. Tuesday 5th July – In Foundations workshop –  By booking only 
  2. I’m on the WPC Booth, Banquet Room on Wednesday 11:15- 1:30 
  3. Thursday 6th July 12:30 pm

Workshop: Reaching Underserved Communities in Latin America 

Host: Christine Jeya (Australia)

Where: Support Group Leaders room is # 312. Hosted by the PMD Alliance

What: Interactive learnings about needs, challenges and strengths in Latin America. I am so excited about this session as I am making it super interactive so you can understand the needs and frustrations of living with PD in South America and also the opportunities and joys.

       4. Friday 7th July 3pm UNANNOUNCED SESSION and location – I will update the details here.

       5. Also my video RAY of HOPE will be shown at the beginning of a session but I don’t know when it will be.  Last time the session at              9am  started with the same short listed video so if you are in attendance you shouldn’t miss my video.

 

There is much more going on and I look forward to meeting folk in person and hope I remember names and faces. My husband David is a volunteer too and is signing up for extra volunteer sessions, bless his soul. He said they need more help!

David and I will have a few weeks holiday with family and friends in the lead up to the congress but I still have a little preparation on the side. 

If you haven’t signed up for the congress it is not too late. 

https://wpc2023.org/

Thanks for all your support 

Christine Jeyachandran 

 

 

 

 

 

 

 

 

 

Saturday the 15 April – Fundraiser

We’re having a fundraiser picnic this coming Saturday 15 April,  we’ll provide cake, fruit and other snacks and drinks. Just come to catch up or Donate to shake it up fundraiser.

We have removed the specifics of where from this public announcement – but us contact directly if you are local and you’d like to support. Support via online donation welcome too.

Donations: https://pause4parkinsons2023.raisely.com/t/christinesparkinsonspicnic?fbclid=IwAR2FuExRAZ83AQo9-W-o8mKih4N74HJt77aLRItzvLHq8RoaR4mwcU53LRQ

 

Thanks for all the votes and views for Ray of Hope. The video seems to be going a bit viral (small scale with almost 2800 views) so please share it, like and comment which helps the algorithm of YouTube share the video simply because it’s already trending and most of all DONT FORGET TO VOTE BEFORE THE 20TH APRIL

VOTE for RAY OF HOPE:

https://web.cvent.com/survey/c8190b9c-c629-439a-afff-e516c2ba3cab/welcome?fbclid=IwAR3tGAYOwE0RCAv6TdUridpGWLJIqa9nwvnCXY2k3xSXf9JncQABtmay6ik

I have a dream ….for Club Dopamine!

A research survey found a significant number of Latin American (Llibre Guerra et al; 2022) people had Parkinson’s Disease symptoms but had NEVER  been diagnosed and not had medical or neurological attention.

The study didn’t ask why but we can imagine some don’t know what Parkinson’s is and others or those same people hide because of stigma and discrimination.  They become isolated which worsens their disability and increases immobility.

Parkinson’s disease has no CURE.

Raising awareness about Parkinson’s is crucial to prevent late diagnosis and start early physiotherapy/exercise.

We must explain that PD is not a curse, your fault or something to be ashamed of.

We are taking action to prevent discrimination and isolation and encourage holistic treatment including exercise which can help symptoms considerably.

We  need  help!

I have a small project I’d like to find funding for that aims to empower people with Parkinson’s (PWP) to thrive:

– to be understood,

– to stop isolation,

– and to get treatment!

Over the last few years advocates have emerged who are willing to share their stories about living with Parkinson’s in Peru. The daily struggles,  the small triumphs and the ongoing battle inspire us to continue. My story has inspired people to exercise to improve their Parkinson’s symptoms and Dorys’ story about the family’s sacrifice has had immense international feedback.

I just published Ray’s story , and it is turning heads and breaking stigma. In 3 weeks it has had 1000 views and lovely comments.  All this without  marketing, imagine what we could do if we had a marketing budget.

Stories connect us. Stories about family. The love seeps into our hearts: strained voices, biting of lips, and love in a look. We have these treasures(interviews) in our hands as I filmed them with a professional in 2021  but they need to be edited and marketed for maximum exposure.

I can’t take this on. I’d like to see it created into a documentary for a film festival. It will give an editor a wonderful creative opportunity. They’re in Spanish but modern technology means this isn’t a barrier. I don’t know how it is going to get made but I have faith it will be made and will be a powerful approach to breaking down stigma but not in an educational boring way…

Watch the first story which happens to be in English and catch a bit of the essence of this project.

I have a dream….but I have had many dreams and I know I often get above and beyond what I expect. It is happening in my life right now …but that’s another story.

I dream not for myself but for those who message me in pain in the middle  of the night, Sara has no neurologist, no exercise coach, she can’t sleep  because of the pain.

For Sara and many more… For Club Dopamine!  May this project get the funding or passionate philanthropist it needs.

Llibre-Guerra JJ, Prina M, Sosa AL, Acosta D, Jimenez-Velazquez IZ, Guerra M, et al. Prevalence of parkinsonism and Parkinson disease in urban and rural populations from Latin America: A community based study. The Lancet Regional Health – Americas. 2022 Mar;7:100136.

Ray’s story:

Your film has 44 wonderful comments

My Film” Would you sell your house to save your mother” was recently in a video competition called “focus on ability”. Unfortunately the website could only hold 10 comments at a time so I couldn’t see all the comments and I asked Ryan from Focus on Ability if there was a way I could see them all. He wrote “Your film has 44 wonderful comments”. I was shocked, that it had so many and most were from people I didn’t even know.

Thank-you everyone for voting and for sharing and for the amazing comments on the video. I do not believe it won the popular vote but you never know and on the 27th October about 7pm Australian time it will be announced in a ceremony on facebook of “Focus on Ability”. It is up for a judges award as an International Documentary.

Win or loose it has been a valuable experience for me in editing the video and managing the whole process of the competition. The video has been seen by over a 1000 people more than saw it previously and many have been challenged, realised how blessed they are and learnt something about Parkinson’s they didn’t know. I have also connected with many people who helped me share it yet again. 

It also encouraged me to start another video project but this time with a young professional. I don’t want to give too much away but I think it is going to to be a powerful short documentary and our aim is to get it into a mainstream film festival. 

Of course I’m now learning you need funding to promote your film and bring it to the attention of the public but since we’ve stepped out in faith and filmed the project we’re going to keep going and have faith that the funding to promote it will come in once we have the final product, it should sell itself. 

I don’t want to give too much away just yet but watch this space. 

Thanks again for your support and interest. 

Christine J.

44 Comments from around the World

Beautiful and heart touching video. Creates a lot of awareness on the disease.. God bless the family.Marsden Park Australia
What an inspiring and educational short film CongratulationsSanta Monica United States
Very touchingSutherland Australia
super videowesley hills United States
Amor sensibilidad empatia y compromiso necesarios para afrontar esta condicion y hacer de esta vida un mejor mundoPereira Colombia
Tried to write something but have no words to describe mother .Liverpool Australia
This portrays humanity and love that is genuine.Bamenda Cameroon
Excellent work by Christine in raising awareness about this disease and the challenges the patient and their families face.Westleigh Australia
Christina honoured her mother by following and keeping one of the ten commandments.Kolkata India
Inspiring and Impactful Love is a verb.Sydney Australia
Well done ChristineCaterham United Kingdom
Excellent work of her daughter. She shows compassion and love for her mother. Credit goes to the mother herself while rearing her. She has learnt from her mother herself. It's a rare exampleDelhi India
Es una gran realidad no hay cura para el Parkinson yo tambin lo sufro pero el amor todo lo puede est gran familia merece ganar con ste vdeo.Voten e inviten a ms personas que lo vean y voten por el. El parkinson no nos definesin embargo es una enfermedad muy difcil de sobrellevar tanto el paciente como la familia se van consumiendo con la enfermedad.Escobedo Mexico
Excellent story and awareness of this decease. Amazing family and the way they took care of their mother
Berwick Australia
JuampyJuampys
Christina did a wonderful thing I wish she become a roll model for many. Many do not care for their aged parents even though they have plenty of wealth. May the Lord bless ChristinaPathanamthitta Kerala India
Very touching. Indeed true love can do anything.Thane-Mumbai India
Muy conmovedora historia y lo ms importante lucharon por su madre la f mueve montaas un ejemplo a seguir bendicionesTALARA Peru
Excellent very touchingChennai India
Truth well told…Bengaluru India
Thank you for helping raise awareness for this unrelenting disease. We all need to speak up to raise awareness so we can end PD nowCalifornia United States
PIURAPiura Peru
A heartwarming story will told. May the angels of God protect us all from evil.Oatley Australia
Inspirational story about a family willing to sacrifice their home to help their mother with Parkinson's.Penshurst Australia
Piura
Piura
An extremely moving film. What a wonderful sacrifice this family has made for their mother.Caterham United Kingdom
It is an amazing story well doneCarlingford Australia
Amazing story Thank you for sharing and creating the video to raise awareness on debilitating Parkinsons disease and its impact on function family and finance. Thank you Pray that there will be a breakthrough in finding cure for this disease.Homebush Australia
Very natural without exaggeration down to earth informative filmBangalore KarnatakaIndia Australia
Very moving Hope we find a cure for Parkinson soon. Instead of spending trillions of dollars on war machinery we should work on finding cure for Parkinson AIDS Cancer etc.
Warminster United States
Rosita is not like many people of this world but allowing God to change the way she thinks. She knows how to do everything that is good and pleasing to God.Romans 122 CEV. In serving her mother's needs she realizes the value of mothers. Parkinson's is debilitating and without medical intervention life is severely restricted and causes an intense emotional with a mental impact that isolates the person. Thanks for highlighting the need in some little published countries.
Cromer Australia
A true story of love compassion and sacrifice an example to emulate of Honouring your father and mother a story that will inspire many to pray for and support those suffering from Parkinsons disease.Caterham United Kingdom
Very enlightening thank you.2207 Australia
Well done a brave step to save the mother and I support this because as scriptures says nothing is greater then LOVE… It is God's love that saved us from the bondage of sins and saitan…All Praise and Glory to God for giving some comfort for this sister…
Little Andaman India

The world needs to see this powerful story. Wish this film will get recognized and that many more will benefit from this very open and honest effort.
Bangalore India
A close knit family's to put the Mother above all their personal need which is selling their prized possession 'The House' is very touching and moving. Very appealing film.
Bangalore India
Truly touched.
Sydney Australia
Thankyou everyone for your votes. I know I have to a wonderful community supporting me. My friends like Ana Mara Sabela Lizzie Esme Larry. David and my kids too have put in hours of help checking and rechecking. It takes a community to make a documentary. And thanks to the family for inspiring so many. I have a longer version of their story at Christine Jeya on YouTube. We hope this video shows the need for a cure and better treatment for all.Arequipa Peru
Inspirational.Concord Australia
Wonderful Christine So good
Caterham United Kingdom
A video which depicts reality of life.It was a very moving video about the effect of the disease. More so about the sacrifice of the family to give the life back to the mother who gave them life in the first place and made so many sacrifices to bring them up.The video is about celebration of life rather than gloomy helpless one It is about victory over one of the most debilitating diseases in life.Penshurst Australia
Well done. If the problem can be solved by money its not a problem its the costs. – Jewish proverb. I would do the same.
Old lyme United States
Ta Doris t vas a ganar
Piura Peru
Muy lindo y espero que esto llegue a muchas personas para que sepan su historia
Piura Peru

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