Author: Christine

Nuevo sitio web en español New website in Spanish.

I have created a Spanish website so you’ll find English below the Spanish

http://activateparkinson.com

¿Por qué este sitio web?

Cuando me diagnosticaron con la enfermedad de Parkinson aquí en Perú hace 6 años, tuve problemas para encontrar expertos en parkinson, información para educarme y encontrar otras personas con quienes poder asociarme, intercanbiar información y así no estar sola.’

Es muy importante no sentirnos aislados, esa es la razón número uno por la que las personas con parkinsons empeoran.

Por eso después de años buscando todo tipo de información, tengo algunos contactos de confianza y quiero compartir con ustedes, tristemente he escuchado historias de gente que se aprovechan de las personas con parkinson, ofreciendo tratamientos que realmente no sirven y muy por el contrario solo los empeoran.

Por eso las recomendaciones aquí tienen que venir de personas de confianza. Es importante resaltar que está página no tiene fines comerciales, no vendemos productos. Lo que buscamos es promover un espacio donde podamos compartir información útil, y de confianza para todos los pacientes y familiares con Parkinson, un espacio para no sentirnos solos.

Los Menús son:

Directorio de Parkinson en Perú – Eso sería profesionales de Parkinsons quienes están o estén preparándose para ser especialistas de Parkinson. No solo es doctores – puede ser: Dietéticas, logopeda, fisioteraputa, y asociaciónes de  Parkinson en varios lugares del Perú.

Educarse (sobre el Parkinson) – Vamos a dividir enlaces por tema y también incluir Manuales sobre el Parkinson. Todos los recursos serán en español pero a veces son escritos en otro país por eso tengan esto en cuenta que a veces los sistemas de salud son diferentes. Tendremos enlaces para profesionales también para ayudarlos a estudiar.

Noticias – Compartiremos fotos e historias de eventos de Parkinsons en Perú o peruanos afuera del país.

Inscribirse– Estamos animando a todos a inscribirse a nuestra web, para escuchar noticias nuevas y futuros eventos.

Gracias por tomar el tiempo para leer y educarse sobre la enfermedad de Parkinson.

Christine Jeyachandran

Why this website?

When I was diagnosed with Parkinson’s disease here in Peru 6 years ago, I had trouble finding parkinson’s experts, information to educate myself, and finding other people with whom to associate, exchange information, and to meet with.

It is very important not to feel “isolated”, this can be the number one reason people with parkinsons get worse.

So after years looking for all kinds of information, I have some trustworthy contacts and I want to share with you, sadly I have heard stories of people who take advantage of people with Parkinson’s, offering treatments that really do not work and quite the contrary only the get worse.

So the recommendations here have to come from trusted people. It is important to note that this page is not for commercial purposes, we do not sell products. What we seek is to promote a space where we can share useful and trustworthy information for all Parkinson’s patients and families, a space so that we do not feel alone.

The Menus are:

Parkinson’s Directory in Peru – That would be Parkinsons professionals who are or are preparing to become Parkinson’s specialists. It is not only doctors – it can be: Dietetics, speech therapist, physiotherapist, and Parkinson’s associations in various places in Peru.

Educate Yourself (About Parkinson’s) – Let’s break down links by topic and also include Parkinson’s Manuals. All the resources will be in Spanish but sometimes they are written in another country, so keep this in mind that sometimes the health systems are different. We will have links for professionals also to help them study.

News – We will share photos and stories of Parkinsons events in Peru or Peruvians outside the country.

Register – We are encouraging everyone to register on our website, to hear new news and future events. Thank you for taking the time to read and educate yourself on Parkinson’s disease.

Christine Jeyachandran

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’s: www.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

Dr Karlo Lizarraga’s Visit to Arequipa – Visita de Dr Lizarraga

El español está abajo los fotos.

Over a 100 people attended the visit of Dr Karlo Lizarraga. He was so genuinely interested to meet people and hear and answer their questions. He is from Arequipa but lives in the US.

More than 60% of the attendees were new contacts for Activate and we now have doubled the number of people with parkinson’s we have with 80 with almost 60 on the whatsapp group and new calls coming in everyday. 

I was thankful for all the people with Parkinson’s (PWP), friends and family of Activate who helped out. We also couldn’t have done it without Dr Isabelle Carmago organising a huge auditorium in the hospital. Volunteers did registration, drinks table and brought gifts. 

I didn’t want to talk too much so Elizabeth shared beautifully her story. Juan brought tears to my eyes as he shared that he has new hope for the future. Juan kinda took over the show and isn’t that what every leader wants, people empowered to step up and take things on. 

Another friend who helped with the projection – at last minute she went out of her way to go and borrow a projector and set it up. Then the video wouldn’t play. So we struggled and finally got it going but without sound. Thankfully my friend Favi who kindly took the photos of the event noticed the problem and corrected the sound and we restarted with sound. What a relief. The video was a new before and after of my experience with gymnastics.

As it was finishing the lady beside me leaned in and said “so exercise helps with Parkinson’s disease”….yes!!!!  I reiterated this point again that yes exercise can improve your symptoms and movement and increase your quality of life. 

Dr Lizarraga is introducing a form of telecare which should be able to help the Peruvian patients but it is early stages so I won’t try and explain it. Dr Lizarraga is also working on advancing the training of neurologists here so that should people with Parkinson’s. 

DR Lizarraga visit and the patient support our group provides is something exciting for the community of Parkinson’s and I hope and pray especially the professional community will be willing to be trained in new methods of managing parkinson’s. 

Our next event aims to help train professionals to assess Parkinson’s patients and recommend exercise plans for them with Dr Koni Mejia from LIMA. We’ll be doing this on a practical way with real patients and teaching some exercises that help PWP. 

Special thanks to Dr Lizarraga for helping us in effect “launch” Activate in a more prominent way. He has also helped me think through some of the issues and define our aims too. Organising his speaking engagement (with the hospitals help)  has turned into a mentoring role, even if by email. Thanks Dr Lizarraga. 

All photo credits go to FAVI BEJAR Fotografia http://favibejar.com/

ESPAÑOL – Visita del Dr. Karlo Lizarraga a Arequipa

Más de 100 personas asistieron al conversatorio del Dr. Karlo Lizarraga. Estaba tan genuinamente interesado en conocer gente y escuchar y responder sus preguntas. Él es Arequipeño pero vive en los Estados Unidos.

Más del 60% de los asistentes eran nuevos contactos para Activate. Tenemos ahora 80 contactos, y 60 en el grupo de WhatsApp y nuevas llamadas todos los días.

Estaba agradecida por todas las personas con Parkinson (PWP), amigos y familiares de Activate que ayudaron. Tampoco podríamos haberlo hecho sin la Dra. Isabelle Carmago organizando un gran auditorio en el hospital. Los voluntarios se registraron, cuidaba un mesa de bebidas a y trajeron regalos.

No quería hablar demasiado, así que Elizabeth compartió bellamente su historia. Juan trajo lágrimas a mis ojos cuando compartió que tenía una nueva esperanza para el futuro. Juan ayudaba con el programa y esto es lo que todo líder quiere, la gente está capacitada para dar un paso adelante y asumir las cosas.

Otra amiga ayudó con la proyección, en el último momento, ella hizo todo lo posible pedir prestado un proyector y configurarlo, pero el video no se reproducirá, así que luchamos y finalmente lo pusimos en marcha pero sin sonido. Afortunadamente, mi amiga Favi, quien amablemente tomó las fotos del evento, notó el problema, corrigió el sonido y lo reiniciamos. Qué alivio. El video fue un nuevo antes y después de mi experiencia con la gimnasia.

Cuando estaba terminando, la señora a mi lado se inclinó y dijo “así que el ejercicio ayuda con la enfermedad de Parkinson” … ¡sí! Reiteré este punto nuevamente que sí, el ejercicio puede mejorar sus síntomas y movimiento y aumentar su calidad de vida.

El Dr. Lizarraga está introduciendo una forma de teleasistencia que debería ser capaz de ayudar a los pacientes peruanos, pero es una etapa temprana, así que no intentaré explicarlo. El Dr. Lizarraga también está trabajando para avanzar en la formación de neurólogos aquí para las personas con Parkinson.

La visita al DR Lizarraga y el apoyo de los pacientes que nuestro grupo brinda es algo emocionante para la comunidad de Parkinson, espero y oro especialmente para que la comunidad profesional esté dispuesta a recibir capacitación en nuevos métodos para manejar el Parkinson.

Nuestro próximo evento tiene como objetivo ayudar a capacitar a profesionales para evaluar a los pacientes de Parkinson y recomendarles planes de ejercicio con el Dra. Koni Mejía de Lima. Haremos esto de manera práctica con pacientes reales y enseñaremos algunos ejercicios que ayudan a PWP.

Un agradecimiento especial al Dr. Lizarraga por ayudarnos en efecto a lanzar “Actívate – Liga Contra el Parkinson” de una manera más prominente. También el doctor me ayudó a pensar en algunos de los problemas y a definir nuestros objetivos Mientras organizando su compromiso de conversatorio (con la ayuda del hospital), el se a convertido en mentor para mi, incluso por correo electrónico. Gracias Dr. Lizarraga.

Todos los créditos fotográficos son gracias a FAVI BEJAR Fotografia. http://favibejar.com/


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

Making connections at the WPC2019 in Japan

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

How is your body when you are stressed?

Do you notice yourself feeling tense, for example in your shoulders? Does your headache? 

Do you feel tired or easily irritated? Does your stomach get upset or do you experience shortness of breath?

While everyone might be a bit different it is important that we notice what stress looks like and notice what happens in our body. Looking for the signals is the first step in dealing with stress.  This was one strategy the fabulous psychologist Rita Ames taught us in an interactive talk about dealing with stress and Parkinson’s disease. She got everyone talking, even those who seemed reticent at first.

Looking back these feelings of stress were with me at the January Activate meeting where I felt overwhelmed leading almost everything at the meeting. So I had noted this and delegated a few things and asked for volunteers. I was encouraged to have lots of help and glad to not be stressed during our February meeting. 

Rita did the main talk and Elizabeth, another volunteer and gifted communicator, encouraged us spiritually. We had a volunteer bring crackers and water and others helped with registration. This allowed me to be free to organise the meeting while carers could tell their side of the story to our registration helpers. The carers often feel isolated so they appreciated having someone to listen to them and show them love. 

The biggest surprise was Juan who I asked to report on our legal status and our plans to create a Non government organization (NGO) so we can receive donations. He shared how he had caught my contagious attitude and was now planning big things for “Activate – Liga Contra el Parkinson”. It’s very encouraging as his plans go way beyond my ideas. He also shared about his life with Parkinson, his struggle with depression and thoughts about how we can help others with this debilitating sickness. It’s exciting to see Juan’s approach changing.

Needs:

  • We may need a new venue in the future so please pray for this.
  • We need to have space for exercise classes too (could be the same place). 
  • Also pray we find a physiotherapist to evaluate people, so we can understand their needs before we start classes and track their progress.
  • Volunteers for Registration at events
  • Volunteers to distribute and hang posters to educate the public 
  • Volunteers for administration and translation, 
  • Our next meeting on the 3rd of March is with a Peruvian Doctor who lives in the USA, so we need to get an organising team going very soon. 

So thanks again to those who helped me this month. I couldn’t do this alone. 

I am still thinking of how to avoid stress. I’m really enjoying the work but the extrovert in me doesn’t want to go it alone.

What can you do when you recognise stress in your life?