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Video Launch – “What are the Benefits of Exercise? Parkinson’s secrets for living successfully!

“The Amazing Benefits of Exercise in combating Parkinson’s Disease”. People with Parkinson’s from around the globe unite to share their stories. #parkinsonsawarenessmonth #empoweredbyexercise #Parkinsonssecrets #parkinsonsdisease

Thirteen people with Parkinson’s from all around the world have joined forces to create a video about the benefits of exercise. Each has been diagnosed with Parkinson’s disease, a neurological degenerative movement disorder that  affects one’s balance, ability to walk, coordination and range of movement. Each experiences Parkinson’s differently but one thing is quite common – People with Parkinson’s are often apathetic or struggling with motivation because of the shortage of dopamine.  Muscle stiffness can make movement difficult, but fighting this movement disorder requires movement.

These Parkie’s are all passionate about one message. They want to encourage others to exercise to combat Parkinson’s because they’ve benefited dramatically; physically and emotionally. Most have found a sport they love which keeps them motivated and a community that helps motivate them too.  This video comes with a sequel discussing “What keeps you motivated”. 

These empowered people implore you to: 

“Start exercising, any physical activity you enjoy doing. Then do it with determination and intensity”. 

Though the world has stopped for COVID19, Parkinson’s disease never takes a day off and neither should you. Waiting to begin an exercise regimen is not an option. This video inspires and gives hope in a time of crisis.

Australian Christine Jeyachandran initiated this video project because she wanted to encourage others positively and knows what it is like to struggle: 

“I had to overcome apathy, doubts, fatigue, and fear but the benefits have been worth the effort” says Christine. Christine was diagnosed at 37 year of age with Parkinson’s Disease. Her story Handstand for Parkinson’s was selected as a finalist at the World Parkinson’s Congress amateur video competition. She grew in confidence, set new goals and kept training. She made a Before and After video which systematically shows contrasting footage of her balance, coordination, flexibility and sheer strength and it has inspired the Parkinson’s community. 

The power of exercise and targeted physical activity to help people live well with neurological conditions cannot be overemphasized”  stated Professor Meg Morris Parkinson’s exercise expert researcher and Head of Allied Health and Professor of Clinical & Rehabilitation Practice at La Trobe University, Melbourne Australia. 

The Sequel to this video is “What keeps you motivated?” which is an equally necessary topic. Click this Link below:

FOR MORE INFORMATION: Christine Jeyachandran

Directory of Parkinson’s Organisations

I am so glad you are reaching out to find Parkinson’s exercise classes. It will be hard but as you’ve seen on the video, our team knows it is worth it.

It might be best you try your local Parkinson’s association and they can tell you what is running locally. This list is from the English speaking world of the video participants. We’re happy to add other groups little by little. Just comment on the post. 

Organisation NameWebsite Link
WORLD
World Parkinson Congress – #WPC2022 in Barcelona https://wpc2022.org/page/barcelona
World Parkinson Coalitionhttps://www.worldpdcoalition.org/
OCEANIA
Parkinson’s New Zealand https://www.parkinsons.org.nz/  
The Duncan Foundation (NZ)www.duncanfoundation.org 
Parkinson’s Australia https://www.parkinsons.org.au/
PDWarriorhttps://pdwarrior.com/
Dance for Parkinson’s – Aushttps://danceforparkinsonsaustralia.org/
UK
Parkinson’s UK  +44 808 800 0303https://www.parkinsons.org.uk/information-and-support/exercise
UK NHS – Exercise https://www.nhs.uk/live-well/exercise/free-fitness-ideas/
Dance for PD in Waleshttps://ndcwales.co.uk/dance-parkinsons
National Exercise referral scheme (Wales) https://www.wlga.wales/national-exercise-referral-scheme-ners
Cure Parkinson’s Trusthttps://www.cureparkinsons.org.uk/webinar-exercise
Wear Undefeatablehttps://weareundefeatable.co.uk/
Reach Your Peak www.reachyourpeakonline.com
Parkinsons Care and Support UK (PCSUK)http://parkinsonscare.org.uk
Organisation NameWebsite Link
CANADA
To find a list of resources available in your area visit Parkinson Canada www.parkinson.ca 
In British Columbia www.parkinson.bc.ca 
To find a Rock Steady Boxing class near you www.rocksteadyboxing.org
For online exercise classes & other great stuff visit U-Turn Parkinson’swww.uturnparkinsons.org
If you are newly diagnosed Davis Phinney Foundation can help https://www.davisphinneyfoundation.org/teams/doug-pickard/ and www.fluidfitstudio.com 
Organisation NameWebsite Link
USA
American Parkinson Disease Associationwww.apdaparkinson.org
Parkinson’s Foundationhttps://www.parkinson.org/
Davis Phinney Foundation (Boulder, Colorado, USA) https://www.davisphinneyfoundation.org/blog/how-to-encourage-people-with-parkinsons-to-exercise/https://www.davisphinneyfoundation.org/resources/parkinsons-exercise-essentials/
Parkinson Wellness Recoveryhttps://www.pwr4life.org/
Muhammad Ali Parkinson’s Centerhttps://www.barrowneuro.org/get-to-know-barrow/centers-programs/muhammad-ali-parkinson-center/
Invigorate Physical Therapy & Wellnesshttps://www.invigoratept.com/
Dance for Parkinson’shttps://danceforparkinsons.org/
Rock Steady Boxinghttps://www.rocksteadyboxing.org/
Michael J. Fox Foundationhttps://www.michaeljfox.org/
StoPD  https://stop-pd.org/
ParkinsonsDisease.nethttps://parkinsonsdisease.net/
Parkinson’s Resource Centerhttps://www.parkinsonsresource.org/
LSVT LOUDhttps://www.lsvtglobal.com/LSVTBig
Blogs/ Podcast /Other
Christinehttps://handstandforparkinsons.com/
Eirwenhttps://peptalking.home.blog/2020/02/12/patiently-exercising/
TanyaParkinson’s Road Podcast
https://www.buzzsprout.com/686759
Johnpdfitonline.org
Kittywww.kittyfitton.com

Ambassador for the World Parkinson’s Congress 2022 – Embajadora de Congreso Mundial de Parkinson.

I am honoured to be chosen as an Ambassador for the World Parkinson’s Congress in June 2022 in Barcelona.

What is a WPC Ambassador you ask?

They are people who have Parkinson’s who are passionate about living well with Parkinson’s and help others do the same. They have attended a congress, I did last year in June in Japan, and they are so excited about the next one and would have booked their tickets already if they could.

“Ambassadors will work as part of our outreach team as we plan for the WPC 2022 in Barcelona, Spain from June 7 – 10, 2022. Whether giving talks at local support groups, writing articles in papers or on blogs, making themselves available to speak about the WPC to communities wanting to learn more about why to attend a World Parkinson Congress, they are invaluable members of the WPC team and we are thrilled to have them on board” WPC website.

It is very exciting and I am looking forward to working with the team of 15 others. I am the only ambassador south of Mexico so I have a lot of ground to cover. The joy of this conference is that it will be in Spanish too so that means that it is important to get the South Americans along while it is in their language.

ESPAÑOL

Me siento honrada de ser elegida embajadora del Congreso Mundial de Parkinson de junio del 2022 en Barcelona.

¿Qué es un/a embajador/a de Congreso Mundial de Parkinson (WPC)?

Son personas con Parkinson apasionadas por vivir bien con Parkinson y ayudar a otros a hacer lo mismo. Han asistido a un congreso, lo hice el año pasado en junio en Japón, y están muy entusiasmados con el próximo y ya habían reservado sus vuelos si pudieran.

“Los embajadores trabajarán como parte de nuestro equipo de promotores y planeamos el WPC 2022 en Barcelona, ​​España, del 7 al 10 de junio de 2022. Ayudaran dando charlas en grupos de apoyo locales, escribiendo artículos en periódicos o blogs, poniéndose a disposición para hablar sobre el WPC a las comunidades que desean aprender más sobre por qué asistir a un Congreso Mundial de Parkinson, son miembros invaluables del equipo de WPC y estamos encantados de tenerlos a bordo” del sitio web de WPC.

Estoy muy emocionada y espero trabajar con el equipo de los 15. Soy el única embajadora al sur de México, así que tengo mucho terreno por recorrer. La alegría de esta conferencia es que también será en español, lo que significa que es importante llevar a los sudamericanos mientras están en su idioma.

 Estoy disponible para hablar en reuniones.  ¿Quien va con conmigo a Barcelona?

https://wpc2022.org/page/2022ParkinAmb?fbclid=IwAR2EFTsD92iMBNv5AofTy23kOsY3PUtPiqpPIoinAX3KOvI5h5zk56RnwLY

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.

Parkinson’s is like a rope climb!

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.

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. 

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.