My Diagnosis Was Like Receiving a Time Bomb
My name is Francisca Ruiz, but my friends call me Paqui. I was born in Santa Cruz de Tenerife, in 1964, and I still live on this Atlantic island, Tenerife.
I am a mother of four boys who are all grown up now. I have always worked, until I was diagnosed with Parkinson's in 2012. I was a marketing assistant, I loved my job. I have always loved painting and literature. Since the diagnosis I have tried to learn new things. In these ten years and seven months I have done writing workshops, photography and I went back to university to study, but the pandemic forced me to stop for the moment.
I was diagnosed with Parkinson's at the age of 48 and I first felt its presence. Something was happening to my right arm, it stopped doing what I told it to do, it wouldn't swing when I walked, even my handwriting was different. No matter how much I asked my brain to move my arm would not obey. Later came exhaustion, I would fall asleep at any time. But everything had a reason (excuse). I was tired like many women. I was a mother, a wife, I worked 8 hours a day and when I came home I was still working. If I didn't move my arm, it was tendinitis, if my handwriting was small, it was from working too much on the computer.
The doctors I consulted sent me home. I felt I was exaggerating my ailments. I remember taking exams and timing myself, because not only was my handwriting different, but it was slow. I told the Doctor what was happening to me and when I referred to the change in my handwriting, the Doctor got up from his chair and I saw her worried face. Eleven days of hospital admission confirmed it, "You have Parkinson's! " Disbelief showed on my face. What is this man talking about? And what did I know about Parkinson's? Only that it was a chronic, shaking, neurodegenerative disease. Then, the visits from family and friends, very worried and surprised.
I had headaches like never before, thoughts of a very uncertain future. And I thought a lot about death. When I was alone I cried. I remembered an interview with Michael J. Fox that I had read some time ago. It seemed so far away then, and now I had Parkinson's too. What damage Youtube videos can do! The first image that came to my mind was an interview with Michael J. Fox. Will I end up the same way, I thought. The return home was no better, more tears, more fear, tiredness, sleep, ... just sleep. I don't know how long I spent in that state. I lived oblivious to everything but myself and searching the internet (Parkinson's, Parkinson's life expectancy, Parkinson's disease progression.
When a person is diagnosed with PD, the impression they receive may be that they have fallen into an insurmountable doom. They may feel emotions ranging from doubt to denial of the diagnosis to a sense of vulnerability, anxiety, sadness or depression. However, although PD lacks a radical cure, effective treatments are available today to control symptoms, preventing or delaying progression to advanced stages as much as possible. But you become aware of this later, when one begins to accept the disease, because I believe that it is never fully accepted. I think there is a need for a communication protocol in hospitals; communicating a disease diagnosis to a patient without knowing if he/she is ready to receive the diagnosis can be a shock for the person.
The diagnosis produces a huge life change for the affected person. The importance of empathy, understanding and support from the medical professional can improve the patient's quality of life. The diagnosis early onset Parkinson’s disease can impact the fullness of life. When Parkinson's disease arrives before the age of 50, the patient needs to make major changes to adapt his or her life to the new situation. Their family and partner relationships, their work and professional life, and their expectations and plans for the future are seriously affected, resulting in anguish, anxiety, fear and social isolation in the future. And despite the great impact and the upheaval that Parkinson's disease will cause in your life, you receive the diagnosis and carried it around alone, without any professional help. It is like you’ve received a time bomb.
The biggest challenge was mainly to learn about the disease and accept it, then to look at myself every morning in the mirror and see that Parkinson's is affecting my features, a little bit, but I am aware that there is no stopping it. The loss of smell, the stiffness, the morning pains, because Parkinson's can cause pain. I have learned to accept and live with it, and my motto is the refrain of a song by Manuel Carrasco, Woman of a thousand battles, which says "one more step, one more, one more and one more, brave woman. Whatever I say is superfluous. I know you want to scream and don't feel alone." It is so difficult to understand, even for us who live with it, and even come to terms with what happens to us every day and your brain that you do not control, that in the end, you end up invaded by a sense of loneliness, rejection and misunderstanding that often leads to social isolation.
I was in an association and my first question was, ‘Where are the women? There must be more young people and women with Parkinson’s’. It kept going over and over in my mind. That's how together with four other friends (Anna Gómez, Inma García, Rosa Blázquez, Sonia Soriano y Sabela ) with Parkinson's we decided to start a blog to give a voice to women with Parkinson's. We want to raise awareness about Parkinson's and how it has grown. We want to raise awareness about Early Onset Parkinson's and women, so that the symptoms are valued differently than those of older people diagnosed with Parkinson's. More research is needed on the impact of Parkinson's on women. The estimated prevalence of the disease in Europe is 1/8,000-1/5,000 (5-10% of all PD patients).
Males are more affected than females. Females develop the disease 2 years later than males. The risk of developing this pathology is twice as high in men as in women, but women experience faster disease progression and a lower survival rate. "It is becoming increasingly clear that Parkinson's differs in women and men. Recent research suggests that biological sex also impacts disease risk factors and, potentially, molecular mechanisms involved in disease pathogenesis," explains the study's lead author, Fabio Blandini. The existence of gender differences in Parkinson's disease with respect to clinical aspects (including motor and non-motor symptoms), biomarkers, genetics and treatment (pharmacological and surgical).
Several studies show that Parkinson's disease in women starts with a more benign clinical picture, probably due to the effect of estrogens (mainly female sex hormones). However, as the disease progresses, women are at greater risk of developing highly disabling treatment-related complications, such as motor and non-motor fluctuations, as well as dyskinesia, compared to men. It is important to know these gender differences as it allows to establish treatment strategies tailored to each patient from the earliest symptoms. These results provide evidence that gender matters in Parkinson's disease, both in terms of clinical presentation (symptoms) and management and treatment.
