An interview with Elizabeth Peñate on Advocacy: Living with Parkinson’s disease in a country of few opportunities on November 18, 2023 by George Ackerman, Ph.D, J.D.
Biography
I am Sonia Elizabeth Peñate Romero from El Salvador, a 46-year-old lawyer, diagnosed in 2017 with Parkinson’s condition, mother of two little girls Maria Fernanda and Izabella Sofia, I come from a family with neurological problems, my father has Parkinson’s, my mother had dystrophy muscular, she is my example of life, despite her condition, I always look out for the well-being of her children. She passed away in 2020 in memory of her mother.
Background
My father has Parkinson’s, my mother’s sister and my father’s cousin also have Parkinson’s, my first symptoms were that when I walked, I did not move my right hand and I dragged my right foot. One day at work my right leg trembled, and the next day my right hand trembled, so I consulted, and they gave me the diagnosis of Parkinson’s, my medication has been levodopa carbidopa of 250 out of 50. pramipexole and amantadine, I lost the hearing in my right ear, loss of smell, I have hypothyroidism, high blood pressure, anxiety and sleep disorder. Sometimes I have had difficult times due to the abrupt change in medication, I have no option for another medication for Parkinson’s because it is the only one authorized in the country, I cannot access a private doctor because my finances do not allow me since I receive $200 a month. I stick to what I have.
Organization
On my own initiative I am forming a support group since we do not have a foundation that looks after us, we do not have medical personnel specialized in Parkinson’s other than neurologists, there are no therapy groups, so I support the groups in Mexico or the United States. United, this reality is what I want to change and that is why I am working with the support of four foundations in the United States, we are starting with firm steps.
What is my passion and how did i get involved in Parkinson’s awareness and hope for a cure?
I am a patient, and I felt the need to know more about Parkinson’s condition. I met many people involved in raising awareness and curing Parkinson’s. Today I am an activist who fights for the rights of the least protected so that there is equality for all. The patients of the world because there should be no borders, we all have the same condition, there should be no privileges and waiting for research towards a cure to become a reality.
What kind of goals do people with Parkinson’s have when they work with me?
They see in me a good-hearted leader who can achieve many things for the countries of Latin America and make our dreams come true.
What type of training and how long do the programs last?
I am going to become an ambassador for the Davis Phinney foundation and a community leader for PMD ALLIANCE, we do not have any type of program because we have been abandoned in our journey by the health authorities and that is why I am working so that we have this type of support now which is an essential part of good treatment.
What effect can it have on a person with Parkinson’s?
It would be a great impact because it would change the patient’s quality of life and tell them that they can have a better life with Parkinson’s.
What you would like to see as a future goal for your programs?
The change of life, of attitude, and that my effort is worth it since I will transform lives.
Which events do you participate in?
In those that I have access and knowledge that is given, I know that there are many resources available on the networks which I share with my contacts and in that way, I am contributing to the community.
How this also helps caregivers?
They are an essential part of a Parkinson’s patient. The caregiver receives all the physical and emotional burden of the patient, so the caregiver must be supported by maintaining mental health care by supporting them with specific workshops for the caregiver.
How can someone contact you. What is your website?
At the moment I do not have a website but through Facebook, X, Instagram I appear as Elizabeth Peñate
How others can become awareness advocates too?
It all depends on each person, if they feel identified, they will do it and they can be good defenders.
How can we better fund research for a PD cure?
Because countries with fewer economic resources do not have access to good medication, to modern treatments, to being part of research. What is the reason and the authorities do not express themselves about it.
In your opinion what is the key to effective promotion?
Telling your Parkinson’s story as each patient is a different story.
How we can raise better funds to support a cure for Parkinson’s
As a patient, I tell you, receiving true support from a foundation, I would be committed to the foundation, and I get involved in different activities to raise funds.
What other activities you do to help improve and support your daily life?
What we already know is: keep moving, don’t stop, good attitude, diet, don’t consume anything without consulting your doctor.
Why should people who do not have Parkinson’s should worry about this?
Parkinson’s is the second growing neurodegenerative disease; the cause is not known, and it can affect anyone.
Have you had a family or relative affected by Parkinson’s disease?
My dad, my mom’s sister, and my dad’s cousin.
If you had a song that told us more about you or represented your life. What would it be?
Thanks to the life of Mercedes Sosa
What is one final statement you could leave for the Parkinson’s community?
Parkinson’s is a condition that does not define your life.