My name is Florencia Cerruti. I was born in Montevideo in 1966. One day I noticed that it was difficult for me to brush my teeth. Some time later the same thing happened while washing my hair. Then my handwriting became small and unintelligible. I was 47 years old when I was diagnosed with Parkinson's disease. I was at the peak of my professional development. The diagnosis was like a bolt of lightning rushing through my body, from head to toe. I was in shock. There were so many questions that bounced around my head that I couldn't even cry. The most difficult to answer was: How do you go on?
After spending a year in "survival mode" I found in journaling the best therapeutic tool; it represented the true road to acceptance. I spent 4 years writing about my feelings and experiences, not daring to talk to anyone about what was happening to me. I understood that the diagnosis had threatened all the characteristics with which I defined myself and that the only alternative to move forward was to reinvent myself.
During that time, I learned to "live with" the disease and stopped "fighting" it. When I managed to make the change, everything felt different. Aerobic exercise became my daily bread. Not only because I know that it is the only thing that can slow the progress of the disease, but because I know that a better day awaits ahead when it begins by exercising. I dance, walk, bike, or take an aerobics class. I also practice tai chi, yoga, take tango lessons and practice meditation.
Unleashing my creativity was one of my biggest achievements. The design and manufacture of a “Parkinson Friendly” handbag is the icon of my creativity challenge. I did it during a period in which rigidity was at its peak. I had to set a half-hour time limit to try to thread a needle, after which I would call my husband frustrated, on the verge of crying. Truly, my greatest expression of creativity, was to encourage myself to imagine me in a different version of myself, to rebirth.
Those who had been reading my drafts constantly insisted that I should publish a book with my memoirs. They ended up convincing me. Thus was born “Renacer a los 50: la enfermedad de Parkinson como punto de partida” (later translated into "Rebirth at 50: In the end it was not The End".) After not having spoken to almost anyone in 5 years, I plucked up my courage and appeared on television for the presentation of my book. I was afraid that I would start crying and not be able to hold back the tears. But it was the opposite. Not only did I not cry, but an infinite calm invaded me as I felt a monumental weight on my shoulders disappear. And that is where the surprises began. I discovered that I had been afraid to talk to people and tell them what was happening to me, but that people had also been afraid to talk to me. Virtually everyone I invited to my book release already knew about my illness. But they hadn't said anything. Out of respect, they said. But I think respect is confused with taboo.
At the presentation of my book, the room exploded with people giving me a standing ovation. They told me that I was brave and admirable for what I was doing. I could not get over my astonishment. On the one hand, because until the day before, I had felt like the “ugly duckling”. But, on the other hand, because I did not understand "brave and admirable". Why does it take courage to speak naturally about an illness? I was wondering why it is embarrassing to say that one has a neurodegenerative disease and does not feel the same when saying that one has, for example, diabetes. Why do you have to make such an exhausting effort to try to hide what is happening to you? They made me several press releases, I received invitations from other countries, I was asked to write articles, I was invited to join groups and networks. While in Mexico I met Marie Perry, with whom together we translated the book into English. Sometimes I think that if someone had told me in those early dark years what would happen after I published my book, I would have thought they were not in their right mind.
In these 7 years of living with Parkinson's, I have learned a lot: first of all, from that subject, which is the most difficult, about life itself. To discover poisons and antidotes. The latter, in my case, are: sleep, meditation and exercise. So essential that it scares: rest, breathe and move. But above all, the most important thing was to find a “what for”? And I found it in the possibility of being able to help others by sharing my learnings. In particular, I want to convey that the diagnosis does not mean the end of life, but the beginning of a new one. We do not choose to have the disease, but we can choose with what attitude we will take on this new life. Personally, although I wish I did not have the symptoms that I currently have, I must admit that I feel in greater harmony with myself, to the point that I have come to question that, if health is the complete state of complete biopsychosocial well-being, perhaps I was unhealthier before I had Parkinson's.
Please tell us how your life has been affected by Parkinson's disease (PD) (as a person with the disease, caregiver, or relative) by visiting Parkinson.org/MyStory.