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Exercise

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

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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.

Not knowing what I was getting into in a good way!

I started the “Parkinson’s secrets to living successfully” video project kind of on a whim. I put it out there as an idea on twitter to see what responses I’d get. It wasn’t long before I got a few interested people responding and sending me their videos. The responses confirmed my hutch that exercise is beneficial and the message worth sharing with the Parkinson’s community.  

Secondly I felt the mix of people would really communicate and connect with more people. 

  • A variety of ages and ages of onset of PD from 30s to 60s
  • A variety of shapes and sizes 
  • A variety of sports and exercise styles and intensity
  • A variety of English speaking countries – USA, Canadian, Wales, Scotland, England, New Zealand and Australia. 
  • A variety of experiences, and
  • all united in the benefits of exercise in treating Parkinson’s disease!

The third realization was that this project was actually going to take a lot of work. I spent a lot of time editing the videos and asking people to send more information or more photos and move video footage. It has all been worth it and thankfully the whole team has been very obliging and positive through the whole process.

The fourth realisation was that we wanted to create a directory of PD organisations that people who had been inspired could contact. Each of the team provided me with details of the Parkinson’s associations and organisations that had helped them and in their context/experience.

And the fifth realisation was that each of the team was willing to share the video with their contacts and organisations related to Parkinson’s. It is thanks to them that the video I has had 1200 views in just over 3 weeks! Video 2 has had over 400 too.

As I watched their stories I got to know them, their hard work became household conversation at our dinner table, their trials and successes and interesting facts. When the kids came into the office they said “that is Tanya” or “that is …”. The funniest comment was my son – he said “Is that my grandma?”. He is nine so not the least bit confused but these folk kinda feel like friends and family. 

I loved the inspiring individuality each brought to the project and I wanted to include all their stories but I couldn’t… I can’t wait to meet them at the World Parkinson’s Congress in Barcelona in JUNE 2022!

My favourite details and quotes(from menory) about the team: 

John
Blogger, Runner and very involved with TEAM Fox.

“Find what you enjoy…I do it for the medals!”
Miriam 
What a long list of sports she plays that I couldn’t include! Impressive! She is a World Parkinson Congress Ambassador

“Exercise is a great antidepressant”.
Kitty  
Comedian, Mother to 4 kids including twins and certainly full of personality. 

“I hate exercising!”
Tanya 
She is a weight lifter, need I say more? She runs a podcast Parkinson’s Road and is now becoming a fitness instructor. I loved her honesty!

“I’d cry on my way to the gym”
Jon 
He has visited every Rock Steady boxing in the USA, he surfs, does hard obstacle races and he is an ambassador the World Parkinson’s Congress

”Some used walkers and they don’t need them after taking up boxing”
Emma
Ninja warrior, She does karate and so much more. This lady can do cartwheels and handstands better than me and without training! She has 3 kids and was nice and honest too.

“I need it (exercise) in my day – If I don’t I get grumpy”
Eirwen 
She is already an avid campaigner in the PD Community and shared our video widely. I loved her input and feedback!

“I can play with the grandkids in the floor”
Jonny
Doctor, artist, animator and finalist for WPC video competition. Check out his socer balls skills. Impressive! 

”Set yourself a goal, if you fail just keep trying”
Alison
Boxing cycling, you name it! Amazingly strong!

“It doesn’t matter what you do… just start doing something”
Robyn

Google analytics tell me that New Zealand is our highest video viewer, thanks to Robyn and Emma and Kitty, despite it’s small size.

“It fixed my frozen shoulders”
Euan
He sent me amazing footage of him doing amazing things – I wished I could have used it all!

“It is theraputic hitting things” (boxing bags not people I assume). 
A.C.
He is an outdoor kinda person, hiking, canoeing you name it. He is also a World Parkinson’s Congress (WPC) Ambassador and is our brave team leader of the ambassadors.

“See you in Barcelona!”

And finally me: Christine – My claim to fame in the Parkinson’s world is my video “Handstand for Parkinson’s, also a finalist at the WPC 2019 and I too am a WPC Ambassador. My focus is encouraging everyone to come to the Parkinson’s World Congress 2022. I am so pumped to meet my team and you can meet them too (of course I am assuming they are all coming!)
 I’ll quote AC says“See in Barcelona!”  

So here is to the team and a sequel video in Barcelona at the World Parkinson’s Congress 2022. 

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

Home-Nastics Video

At home for enforced quarantine in Peru, so we are gymnastic’ing at home. Keep active for your health.

Por #quedateentucasa no podemos llegar a la gimnasia donde normalmente entrenamos gimnasia artística. Por eso hacemos como familia juntos. Siempre estirarse antes y después. ¡Actívate por su salud!

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

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.