An interview with Ana Liste Vilariño on Advocacy, July 18, 2023 by George Ackerman, Ph.D, J.D.
I am about to be 49 and was diagnosed in June 2020 aged 45. I am of Spanish origin but raised from the age of 3 in London, UK so I feel a “split personality” that never quite fits in anywhere! I studied French and Spanish at university, spending a year in Granada, Spain and then in Aix-en-Provence, France. After a period living in Spain teaching English and working as a freelance translator I moved back to London where I worked in the world of export and logistics for companies like the drink’s distributor Pernod-Ricard and Japanese based, Mitsui. In 2004 I decided to move back to Spain to live a simpler life and leave the London “rat race” behind. I began to work in Inditex (Zara clothes brand) in 2005 and have been here ever since still working in import/export and transport and specializing in air security.
On the personal side of things, I reconnected with my childhood sweetheart after about 30 years and in 2014 I became a mother. My partner was diagnosed with terminal lung cancer 3 years or so later and he passed away after a 9-month battle. This left me widowed with a nearly 4-year-old.
Life moved on with a tremor coming into my life and during Covid a diagnosis of Parkinson’s. I currently work in a company and on top of that am a single parent.
Please tell me a little about your background.
I live near Coruña in northwestern Spain. My family are from here, but I grew up in London, England and have been here for 19 years now. I work in an international company in the import/export and transport side of things. I have an 8-year-old son and was widowed nearly 5 years ago.
I became involved in the whole Parkinson’s world when I was diagnosed in June 2020, in the middle of the pandemic. Prior to that I had been told I had a stress tremor due to the death of my partner in September 2018 and then it was Essential Tremor about a year after that.
When I was diagnosed, I began to search online for anything that could help me deal with the news, could help me delay the process and find out more.
Can you tell me more about your advocacy?
I feel I am a tiny drop in the ocean of advocacy when I see so many people I admire and that inspire me on social networks and when I went to the WPC in Barcelona. I am open about my condition and advocate all around me in day-to-day life to show work colleagues, friends, and family that this is not just a condition that happens to “old men” and show them what it involves on a daily basis. I am starting to get more involved in social media and see it as a route to help those that are newly diagnosed, those that like me, searched for answers and optimism. I try to promote a knowledge and understanding within my company and have been in talks about various ways to raise money as so many colleagues have someone in their circle that has been touched by Parkinson’s.
What is your passion and how did you get involved in Parkinson’s awareness and hope for a cure?
My passion is to show people that it is a condition that does not discriminate and hits all ages and nationalities, and that life doesn’t end with a diagnosis. It changes but doesn’t end there. I became involved simply by joining groups on social media and following those that inspired me, educated me, and gave me a sense of optimism.
What effect can your advocacy have on an individual with Parkinson’s awareness?
I hope my advocacy can reassure an individual that life goes on. Life can still be good. In some ways, life improves as you become aware of the value of the here and now. I hope I can make someone laugh and see the “funny side” of this condition as I think that the mental attitude to it is crucial.
What would you like to see as a future goal for your advocacy?
I would like to reach people newly diagnosed with YOPD and assure them in a way I needed when I was newly diagnosed.
What events do you participate in?
For now, I have been to the WPC 2023 in Barcelona
How does this also assist the caregivers?
I have not focused too much on caregivers and have done more to support those like me, single parents to a young child and with some support around but not that of a partner. A lot is focused on partners helping and it’s difficult when you don’t have one and have the added worry of being well for your child for as long as you possibly can and making sure they have as normal a childhood as possible despite the restrictions that Parkinson’s places on us.
How can someone get in touch? What is your website?
I am on Facebook and Instagram – using Instagram a lot more simply because I have found a more “positive” community and group of people that lift me in darker moments, make me smile, are there to share experience and knowledge and generally make me a nicer person to be around!
If you had one final statement or quote you could leave for the Parkinson community, what would it be?
This condition takes so much but it gives as well, we must find a positive anywhere we can and hold on tightly to it and not let the darkness in. And should dark moments come, we need to be kind to ourselves and realize just how tough we are! There will be a cure and I am convinced it will be sooner rather than later and until then, we must live each moment, laugh, take care of ourselves, for ourselves and those we love.