The oldest living patient with Duchenne Muscular Dystrophy.
Mr. Paolo Paoletti is currently the oldest living patient with Duchenne Muscular Dystrophy.
In this interview from 2015, he shares his life, how he deals with the disease and which are the benefits from the use of Negative Pressure Ventilation therapy.
Mr. Paoletti, you are the oldest patient with Duchenne Muscular Dystrophy. How old are you?
I’m 53 years-old.
Can you tell us your story?
I was born in Rome in 1962 and grew up in Fezzano. I currently live at Le Grazie, near La Spezia. Since I was a child I lived with Duchenne Muscular Dystrophy, a genetic disorder characterized by rapid and progressive muscle degeneration and weakness. Currently the disease does not allow me any autonomous movement except that of the eyes and lips. Healthcare professionals, relatives, friends and volunteers share with me every aspect of my day-to-day life, weekends and festivities included.
What do you enjoy doing, which are your hobbies?
I love music, movies, writing and travelling. In December 2015 I published my first book, titled “Anna and Marco, A Story of Love and disability”. I also write articles for magazines. I enjoy travelling with friends looking for new adventures and emotions. I still recall vividly the “Paoletti Eurotour” in 2006. Thanks to a dedicated camper I visited capitals such as Paris, Amsterdam, Berlin, Prague, Vienna. My dream is to visit the United States of America.
Which were your dreams as a child?
I have been sharing my life with Duchenne’s Muscular Dystrophy since my early years, and I was not able to go to school as a child or teenager. I recently started studying again and graduated from high school when I was 52 year old. I am currently enrolled at the faculty of Philosophy at Pisa University, I can follow the courses thanks to new technologies like digital books and e-learning.
Among the news you read and see on tv, which ones strike you?
Sometimes I am deeply troubled by the lack of respect for Life. In this crumbling world, luckily there are still real values like Love, Friendship and Solidarity.
What brings you joy?
The awareness of being in this world, of exisiting. I like to define myself as a man who has fallen in love with Life and Love.
How long have you been using the Negative Pressure Ventilation system for?
Since 1988, it will be 28 years in May 2016.
What was your first reaction to it? What did you feel?
It was difficult in the beginning, but also a positive one. It didn’t take away my desire to live, dream, improve myself.
How does it feel to share your life with the Poncho made by Dima Italia Srl?
The poncho allowed me to avoid being tracheotomized and all the consequences deriving by this procedure. It improved my quality of life. Although you may not think it, I have a good relationship with it.
Can you tell us more about your relationship with technology?
I believe technology is essential. It is important to convey the importance of medical technology, and in particular of the poncho, thanks to which I have been able to live until now.
What is your advice for users who are starting to use Negative Pressure Ventilation? Any tips?
Patience, because this is the only way to obtain the best results.