DOENÇA de PARKINSON: direitos dos pacientes e conscientização da população!

Danielle Lanzer - founder of the "Vibrar com Parkinson" (Vibrate with Parkinson's) movement. Professor Dr. Edson Bor-Seng-Shu, neurosurgeon, associate professor, HCFMUSP (Hospital das Clínicas da Faculdade de Medicina da Universidade de São Paulo) Dr. Marcelo de Lima Oliveira, neurosurgeon, PhD, HCFMUSP Daniele holds a degree in chemistry, is a researcher with a master's and doctorate in the field, and is currently an activist for raising awareness of Parkinson's disease. Dani is the creator of the "Vibrar com Parkinson" movement and author of the book "Entre Nós" (Between Us). Parkinson's disease has a historical stigma that weighs heavily on the patient: in the past it was called "Parkinson's disease". Studies show an increase in the incidence of Parkinson's disease, and it is expected that by 2050 the number of people with this disease will double due to worsening lifestyles and increased life expectancy. A recent study shows that today there are 500,000 people with Parkinson's in Brazil, but considering young people with the disease, the number reaches 600,000 patients. The main symptoms are: plastic rigidity, tremor, slowness of movement, and postural instability. The main non-motor symptoms are: sleep disturbance, melancholy and anxiety, constipation, reduced sense of smell, pain, and dysautonomia. The main risk factors are: age, sedentary lifestyle, a lifestyle with good sleep, a good diet, and environmental factors such as handling toxic substances. Dani describes that from the onset of symptoms to diagnosis it was a difficult and painful process. She began to lose fine motor skills in her arm and forearm, and experienced stiffness in some parts of her body. In the interview, it is noted that in the first part she is almost "off" with stiffness and difficulty speaking, and in the second part, after medication, she became "on." When the diagnosis was suspected, Dani initially did not accept it and sought a second opinion. She saw several doctors before receiving confirmation. On that day, her world collapsed as if she were having a nightmare. From the onset of symptoms to diagnosis, six years passed, and today she has had the disease for 21 years. She received the diagnosis at age 36. Initially, she experienced severe depression and couldn't accept the diagnosis because acceptance would be like surrendering to the disease. She underwent psychotherapy because she tried to hide it from everyone. It's important to note that most patients feel ashamed of the diagnosis in the first years of the illness. Isolation is a very frequent behavior among patients after diagnosis. One day, the psychologist told her she would have to choose a day to tell her friends and family, and months later she told her friends: she felt very relieved that day. During this period, she began writing the "Vibrating with Parkinson's" project, and "Vibrating" comes from "vibrating with life." The project's objective is to help people with the disease and raise public awareness about it. Information facilitates the integration of people with the disease into society. It's important to emphasize that the diagnosis is never given at the first consultation. The first consultation may reveal Parkinsonian syndrome. Tests are requested to rule out other diseases that can cause these symptoms. In another phase, medication such as Dopamine is prescribed to assess the patient's clinical response. Symptom improvement with Dopamine is one of the diagnostic criteria. Following this, an evolutionary characterization is performed with a 4-year follow-up to detect other symptoms characteristic of other diseases similar to Parkinson's disease. The experiences described by Daniele Lanzer of patients who are part of Vibrar com Parkinson are very impactful. Some experiences were negative, where patients were inadequately treated by healthcare professionals, some were ignored by the population who are unaware of the main limitations of those with Parkinson's disease, among other accounts. Therefore, Vibrar com Parkinson joins other associations to support these patients and expand knowledge about Parkinson's disease. #parkinson #parkinsonsdisease