Charity: Parkinson Italia
Medical Condition: Parkinson’s Disease
Medical Therapy: Deep Brain Stimulation
Lucilla has lived with Parkinson’s disease for nearly 30 years, struggling to learn how to move throughout daily life without attracting undue attention. Since 2001, after receiving deep brain stimulation, she has worked to improve quality of life for Parkinson’s disease patients in Italy.
"I am 64 years old and I have been suffering from Parkinson’s disease (PD) for 28 years. I got the first symptoms in 1986 at the age of 36, was officially diagnosed in 1989, and received deep brain stimulation in 1998 to treat the symptoms.
"It is impossible to understand the reaction of a PD patient to DBS without having at least a rough idea of the hell he or she is coming from. To me, PD is much worse than a disease, it is a movement deformity. When the muscular contractions begin, they can’t be controlled and made me look so strange that people couldn’t help but stare at me.
"I had to learn the simple, common gestures of everyday life all over again. Anything I could manage to do to go unnoticed – just a woman in a crowd – made me ecstatic. After so many crazy years during which every single gesture had to be snatched out of Parkinson’s iron grip, it is easy to imagine what an enormous relief, what a fantastic sense of freedom, what a pure happiness I experienced when symptoms disappeared almost completely. It was not a cure, but it felt a lot like one.
"Since January 2001, I have served as the President of Parkinson Italia, a confederation of 28 PD Associations all over Italy. Thanks to these local organizations, patients can benefit from a network of contacts, information and services. Moreover, Parkinson Italia spreads correct information about the disease, represents the people suffering from PD at institutional level and advocates on their behalf with the Public Administration. Because of these efforts, people suffering from PD in our country find it less difficult to keep in control of their life, improve its quality and make their voice heard in the disease’s treatment."
"Savor the fantastic gift of a busy day."
"I think that it is important to understand that whatever may happen in life, it depends only on us to make it an important lesson in wisdom or a meaningless accident. Only those who have experienced this overwhelming wave of light and joy can understand how important the concept of an extra life is, and the responsibility to address human suffering."
Parkinson Italia represents 28 chapters of Parkinson’s disease patients associations throughout Italy, providing support, information and defending patients’ rights.