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Nutrition and Diet

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

World Parkinson’s Congress 2019 Kyoto JAPAN

The World Parkinson’s Congress in Japan was amazing and life changing. Researcher from around the world joined with patients and carers to hear and share about the latest scientific developments and support each other in this journey called Parkinson’s disease.

A reception for Australian’s got me started on networking. There were hundreds of Aussies and over 60 countries represented. I was the only one from Peru.

I heard talks about advocacy, diet, the best exercise, depression/ apathy and anxiety and coping with early onset Parkinson’s with family/work. Some scientific talks that went over my head and others I’m reviewing at home to remember. I did yoga, a dance class and tango which was so empowering.

I met people from all around the world and I especially tried to connect with Latinos and Spanish people and encouraged people to come visit us in Peru and maybe volunteer there.
I told everyone about how tough it is for sufferers in PERU but was so excited to hear next time it will be in Barcelona so that means Peruvians can attend as the conference will be translated into Spanish as well.
My video did not win – but thanks again to everyone who voted nonetheless. The winning video was professional, one of four entries by the same person and about a legendary campaigner/PWP in the Parkinson’s world who had passed away suddenly. A worthy winner indeed.
It was amazing to see how different the symptoms were around us and that there must have been over 200 people under 55 with Parkinson’s at the conference. Over 2000 people attended from 60 countries.
I loved it so much that I can’t wait for World Parkinson’s Congress in 2022. #WPC2022

Knowing Spanish, I hope I might help in some way with organisation as it is run by a small NGO and as you can imagine it is a mammoth undertaking and they need volunteers to help run it. Maybe you could come and volunteer too.  

Saddened by Parkinson’s stories in Peru

Everyone is asking: Yes I am back at the gym training with my coach, trying crazy things. M y daughter, Amelia, has pointed out I am doing this wrong and how to fix it.
Little by little.

Thanks everyone for sharing and donating to the page: https://www.gofundme.com/hand-stand-for-parkinson-disease

Anything in addition to the target goes towards an educational campaign for patients, families and interested health professionals. Today I met with a Parkinson’s sufferer who has lost faith in doctores, who don’t give patients enough time to educate them properly, explain repercussions of drugs (like laxatives) nor the importance of nutrition, exercise, exercises for the voice, self care and the prevalence of depression and how to confront the disease. Looking back maybe I got more time, being the gringa because I was firing question after question despite noticing the doctores desire to say “next” written all over his/her face. But even then the responses were simple ” yes physiotherapy could help”. I am working one on one to educate but more is needed. I know I have been an encouragement but thinking of a team of people educated in Parkinson’s to deal with this nasty disease properly. People able to model love and kindness and willing to go to the regional centres too.

Special Diet for Parkinson’s?

Eating Out Anniversary

People frequently ask me about Diet and parkinson’s disease. There is no magical diet to help parkinson’s.  There is lots written about this but more scientific studies are needed and ideas not widely tested yet. This is an overview only.  These following points summarise the concepts about diet I have learnt through reading and visiting professionals.

(SINCE WRITING IT HAS COME OUT THE MEDITERRANEAN DIET COULD BE HELPFUL – JULY 2020)

  1. We all should eat a balanced diet, fruit, vegetables, fish and whole grains.
  2. That although some foods are higher in dopamine you’d need to eat them by the bucket load to make a difference
  3. Many parkinson’s patients suffer from constipation so need to have a high fibre diet to help move the bowels
  4. Others have medication that makes them lose weight (not I)
  5. Others have physical problems that make cooking/ preparing food hard or have problems swallowing.

A nutritionist has evaluated my diet and was happy with what I ate. Thankfully I am not affected by the problems mentioned above.

¿Dieta Especial de Parkinson’s?

La gente me pregunta frecuentemente sobre la dieta y la enfermedad de Parkinson. No hay una dieta mágica para ayudar a la enfermedad de Parkinson. Hay mucho escrito sobre esto, pero se necesitan más estudios científicos y las ideas aún no están ampliamente probadas. Hay mucho escrito sobre este tema, este es solo un breve resumen. 😉

Los siguientes puntos resumen los conceptos sobre la dieta que he aprendido a través de la lectura y la visita de profesionales.

  1. Todos debemos comer una dieta equilibrada, frutas, verduras, pescado y cereales integrales.
  2. Que a pesar de que algunos alimentos son más altos en dopamina, deberías comerlos por la carga del cubo para hacer una diferencia.
  3. Muchos pacientes de Parkinson sufren de estreñimiento, por lo que deben llevar una dieta rica en fibra para ayudarle ir al baño.
  4. Otros tienen medicamentos que les hacen perder peso (no yo)
  5. Otros tienen problemas físicos que dificultan la cocción / preparación de alimentos o problemas para tragar.

Un nutricionista ha evaluado por la dieta y se mostró feliz con él porque está equilibrado. Afortunadamente no estoy afectado por estos problemas mencionados.