Carmen Girón
Carmen G. is a young woman and mother, but also a very good professional nurse, a job she has done with dedication and passion.
With enthusiasm and with all her sensitivity, she founded the Pepita association, Plataforma de Enfermo de Parkinson Inizio Temprano y Amigos.
The association is dedicated to people with juvenile-onset Parkinson’s and operates in Gran Canaria and Tenerife.
We meet Carmen in this interview.
When I think of you Carmen, I feel life and desire to live. You answered Parkinson’s diagnosis with a pregnancy … do you want to tell us about it?
I had never really thought about it seriously, never before.
When you are diagnosed like this, your thoughts revolutionize your head, doubts and uncertainties approach you to stay forever. The day I was diagnosed I was unable to think further. But later at home, cold, when I managed to put a little order in my head to start facing my new reality, I thought that maybe I had lost the opportunity to be a mother.
And so I put it in the next consultation of the neurologist … I would have liked to be a mother … My neurologist saw no problem and explained to me that if that was my wish, it was at the ideal moment since I had not started taking medication. If I could get pregnant we could start treatment after birth.
Two months later I had my first fault, Marta was on the way. Despite the fact that I was recently diagnosed, the pregnancy was long and hard for me because the disease was beginning to take on more and more, and I suppose that the stress suffered by the body was also reflected in my general state.
Despite this, I managed to give birth to my baby naturally, I even breastfed her for 3 months before starting the medication. It was a difficult month and I really wanted to start because I was not feeling well.
It’s pretty frustrating being a first-time mom and managing a newborn baby with Parkinson’s. But hey, with a little patience everything is achieved.
Throughout the world, the issue of juvenile Parkinson’s disease is gradually changing the focus of what was considered a pathology linked mainly to the elderly. The association he founded, Pepita, is specifically aimed at young Parkinsonians. How was the association born?
The association arises from a project that I begin to elaborate when I know the local Parkinson’s association of Gran Canaria.
At that time I was collaborating with the association in the management of documentation that I urgently needed and, when I met the organization for the first time from the inside, I realized that the services provided to me did not solve any need for me.
I started to think that, maybe, instead of a physical therapist, I needed a personal trainer more…. that, maybe, instead of an occupational therapist what I needed was a job counselor.
Well, the needs and problems that were solved in the association were not mine.
Also, I could see the reaction of some new younger users and I was aware that the image they were there did not do them any good.
Until now and had seen the association from a managerial and nursing point of view, but when you see it from the disease it is very different.
I thought that a specific section could be included in the structure in which problems such as mine were solved, which met the needs that I had discovered and that other people in the same situation assumed to be common.
From there comes the idea to do a care project for people like me who have a diagnosis at an early age.
Finally, this project was developed independently since it differed too much both in objectives and scope (patients from both provinces had contacted me) from that of the existing parkinson’s association.
This is how PEPITA was born.
And then, one day in August 2019 we met … many dreams, projects, an alliance that not even the greedy can stop!
Parkinson’s has given me good things, very good things, and it has put wonderful people in my life. That is undoubted.
When I found out about your existence, my heart skipped a beat because it seemed like an impressive project and I couldn’t believe I was here! So close! In Fuerteventura!
I remember that it was Sunday night and that I was checking on the Association Registry website if PEPITA registered appeared.
I checked it daily and it always gave me the same answer: only the parkinson association in gran canaria appeared.
That night I saw more text than usual … a Parkinson association in Fuerteventura? I had to read it several times because I couldn’t believe it.
I looked it up on the internet and indeed, with a website and everything!
There was a contact phone and I did not hesitate, I called.
Alvaro had to be amazed, a girl with parkinson, verbose, assaults him on a Sunday night! …When I let him speak, he explained that he was the biologist of the association and that the next day I would pass my contact to the founders of Parkinson’s No Limit.
The next day I received a message from Francesca, there was a feeling of immediate connection on both sides, we were happy to have found each other, soon synergies, plans, illusions emerged … a universe of possibilities opened up for us in our common goal of helping to those affected by Parkinson’s.
Life is not always easy, it is up to us to decide how to deal with it. What has a positive effect on Parkinson’s in your life. If you look in the mirror, what compliments do you pay?
It is true, life is hard, it is not easy, but we must learn from the lessons it gives us, even if they hurt there is always something positive to learn.
These situations teach you to take advantage of every opportunity, to enjoy every moment, not to waste energy.
You become a more sensitive, supportive and empathetic version of yourself.
You have no alternative, the only option is to be strong and move on. Humility, being aware of your new limitations and reorienting your goals are your tools to achieve a full and happy life.
