Sharing life

This is the English version of the post published on Con P de Párkinson. The original Spanish can be found here.

In my early years in New York, I ended up dining more than once at a Mexican restaurant near the office. It was a great place to meet up, the food was excellent and the margaritas, just amazing. In 2011, halfway through my stay in Europe, I got some terrible news: it was closing. They told me it was the same old story: an absurdly high increase of the rental price. What I did not know was that there was more to that story.

In September 2021, Parkinson's Life, a website of the European Parkinson's Disease Association (EPDA), published an article and a podcast interviewing Zarela Martínez, a Mexican chef living with Parkinson’s. I started reading the article and learned that she had had her own restaurant in New York, and then I thought “wait a minute! Zarela… Zarela… Zarela was the name of the restaurant we used to go to!”.

Thanks to our colleague Richelle Flanagan of the Women's Parkinson's Project, who had interviewed her, I got in touch with Zarela. I told her about our mission here in Con P de Párkinson and I suggested recording a program on Onda PK. It turns out that Zarela is not only a chef: she has written recipe books, hosted a TV show, gives talks on how to live well with Parkinson's and even has her own podcast with one of her sons, also a chef. She was delighted with the idea and you can listen to, and watch, the result on Onda PK (in Spanish).

We talked about a thousand things. Zarela was born in Agua Prieta (Mexico) in the state of Sonora. She spent the first years of her life in a family ranch and started writing her mom’s recipes from a very young age as she watched her mother cook. Her book Food from my Heart is the result of compiling all those recipes, and many more, along with stories about her life.

Another of Zarela's projects is to tell the world that it is possible to live well with Parkinson's, even if we have to make adjustments. She explained her kitchen “building blocks” project, that is, having certain things ready-made and close by that will make our lives easier. One of the examples she gave was pico de gallo, which calls for fresh tomatoes, onion, cilantro, chilis and garlic. It can be stored in the fridge, we can throw in some eggs and boom, we have some Mexican-style eggs, or with zucchini, corn, and cheese. In the Recetas section of Con P de Párkinson you will find Zarela’s recipes so you can give them a try and add a little spark to your everyday meals.

We hope you will try some of the recipes and, if you do, tell us about it. Do you use any tricks in the kitchen to make your life easier?

Notes:

If you speak Spanish, check out this episode of Onda PK podcast to understand the title of this blogpost.

Also, the book has not been translated into Spanish yet so, to any publishing house reading this post, let us know if you are interested in doing so!

Translation into English by Isabel Sáez Jiménez (Universidad Complutense de Madrid)

Parkinson's CHAMP

In 2017, Sabela and the Hotsteppers, our team at the Parkinson’s Unity Walk, was featured in their CHAMP section:

A couple of years ago, my handwriting changed. It went from round and neat to tiny and illegible.

A couple of years ago, I noticed that daily actions like brushing my teeth, taking bills from my wallet, having soup or buttoning my clothes were increasingly challenging.

A couple of years ago, I noticed my right foot started dragging and sometimes I tripped for no apparent reason.

In May 2016, I saw a movement disorder specialist at NYU Langone. My primary care physician had diagnosed me with essential tremors; I know now this is a common misdiagnosis. My movement disorders specialist ran the whole battery of tests (now I can do them with my eyes closed), and then sat down. Looking me straight in the eye, he told me I had a mild case of early onset Parkinson’s disease (PD).

I remember very clearly that sunny New York afternoon. I took the ferry back home and sat on a bench facing the East River while I started processing the news. There were two thoughts in my mind: telling my parents, who live in Spain, and fighting with all my strength a chronic, degenerative and incurable condition.

Since my diagnosis, I have volunteered in several research studies, both on site and remotely, through Fox Trial Finder at the Michael J. Fox Foundation, I keep abreast of developments through associations like the National Parkinson’s Foundation (NPF), and friends and family back home have joined the Federacion Espanola de Parkinson.

I found out about the Unity Walk through NPF. I thought it would be a good idea because what’s better than walking around Central Park in April? And I created a team, Sabela and the Hotsteppers. The name was the result of a very serious and strict survey carried out among some of my friends. My initial goal was $2,500, and I raised over $11,000! It was such an accomplishment that, to this day, I have to pinch myself to know that I’m not dreaming. And it also meant meeting the inspiring and joyful May May Ali at the thank you reception for top fundraisers the night before the Walk (apparently, my mom reminded her of her ex-mother-in-law!).

Walking on that Saturday morning ended up meaning more than I had expected. The support from friends and family who showed up despite the menacing clouds is, to this day, a source of energy and strength for me. The feeling of community, of fighting together, of raising awareness was so immense that, later that day, my dad turned to me and said "even though we're an ocean away, we're not as worried anymore after what we've experienced today.” And this is why I'll walk again in 2018, so that other people, especially those who've been recently diagnosed, can feel supported, and know that they're not alone.

I use every opportunity to raise awareness about PD. I am very active in social media and I talk openly about my condition – yes, I even joke about it!

I have joined the ranks of PD fighters who are hopeful about finding a cure. As I tell my doctors, I sincerely hope they end up having to find a new specialty. I firmly believe that we are stronger together in this fight.

Sabela Avion
Team Captain, Sabela and The Hotsteppers

Con p de párkinson

In February 2021, I wrote a post for Con p de párkinson, a Spanish blog for women diagnosed with young onset Parkinson’s disease. You can read the English version here.