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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

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?

En Periódico Online – Encuentro

I am in the newspaper again to educate society that exercise is so important to improve parkinson’s symptoms and improve quality of life. Estoy en el periódico otra vez. Todo para educar la sociedad sobre la enfermedad de Parkinson: El ejercicio reduce los síntomas y por lo tanto mejora la calidad de vida. Por favor poner comentarios en “Encuentro”. Gracias
Link to Newspaper: http://encuentro.pe/deportes/la-gimnasia-artistica-como-terapia-del-parkinson/

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.

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. 

My first online speaking engagement

I have been invited to speak at a worldwide online summit (conference called INSIGHT into Parkinson’s 2020. I am honoured and have been thinking about what could encourage others with Parkinson’s Disease. I am preparing and want to practice soon. Exciting!

My photo and profile appears on the speakers list.

I even got invited to another conference to speak via LinkedIn but I think they just do that as a marketing tool to get people along to the conference related to Parkinson’s. Plus the email called me DR Christine Jeyachandran so as you know I am not a Doctor, so I don’t think I can live up to those expectations.

But the INSIGHT Summit is for real. I met Mel, (Melissa McConaughy) the event founder in 2016 when I signed up to do training for Parkinson’s Warrior. This is a set of exercises that help improvement of People with Parkinson’s (PWP) and I bumped into Mel again in Japan at the World Parkinson’s Congress, and she invited me to be a part of Insight 2020.

I have become an advocate for exercise which is something I would never have imagined doing. I just see so many benefits for myself and for others, so I can’t help but tell everyone how it has helped me. I won’t explain all my improvements here but recently my coach mentioned my posture had improved which is something I had not realised. It is nice to make progress. I still would like to make a before and after video about taking up gymnastics to fight the Parkinson’s disease.

Anyone interested in attending the INSIGHT Conference online can follow the link. All tickets are donations to Parkinson’s Research. https://www.insightintopd.com/speakers/