Early Parkinson’s disease affects more than 2,000 young adults in Portugal, a situation that makes their lives unpredictable and forces them to reduce their working hours.
No three Portuguese people share their testimonies about living with the diagnosed disease in full active life. Marco Serrabulho, Rita Botelho and Carmo Bastos reveal how the unpredictability of symptoms transformed their professional and family routines.
IPredictability is the biggest challenge of the disease
At the age of 35, Marco Serrabulho was diagnosed with Parkinson’s disease, which led him to stop being a teacher and made his day-to-day life unpredictable because he was often unable to fulfill the commitments he made.
“We never know how we’re going to be”, Marco Serrabulho, a former teacher, told Lusa that he left teaching in the area of visual and technological education, although he continues to work at the school, in Évora, on tasks related to IT.
Parkinson’s disease is a neurodegenerative, chronic and incurable disease and although it is associated with people over 60, it can be diagnosed before age 50.
The disease brings symptoms such as tremors, slow movements and muscle stiffness.
Marco Serrabulho, father of three children, stated that after a few months of the diagnosis it became difficult to hide the students’ symptoms, such as tremors and lack of balance.
“I was shaking a lot and the boys asked me what was wrong with me. If I was cold, if I had any problems,” said Marco Serrabulho, who began to feel uncomfortable teaching.
Currently 53 years old, she said that the biggest difference she feels before and after the disease is the unpredictability.
“I can arrange to have a coffee with someone and then I can’t get off the couch, because at that time the medication isn’t working,” explained Marco Serrabulho, remembering that medicines for illnesses don’t always work.
When the medication does not work or has not yet taken effect, patients may have difficulty walking, drowsiness, tremors and their body movements are slower.
To slow down the progression of the disease, Marco Serrabulho started running: “Running has helped me a lot to keep the disease under control.”
More than R$100 per month in medication to control the disease
Rita Botelho, 44, diagnosed with Parkinson’s at 39, said she has never felt tremors, but has slow movements, muscle stiffness (which causes pain) and insomnia.
“I stayed up practically all night and was unable to get in the car and take my daughter to school,” said Rita Botelho, giving an example of how the disease affects her routines.
Rita Botelho, owner of a jewelry brand, also said that she can no longer work as many hours as before and that every month she spends more than 100 euros on medicines, even though some are reimbursed.
“Everything changed, I didn’t think before, I woke up and went about my life. Now I have to have everything planned. I have alarms to eat,” said Rita Botelho, indicating that the time she eats and what she eats influences the effectiveness of the medications.
Muscle slowness and stiffness are symptoms in early Parkinson’s disease
Early Parkinson’s disease affects most people at the peak of their lives, acknowledged, for her part, the president and founder of the organization that supports people with the pathology – -, Carmo Bastos, diagnosed with the disease at age 44.
“They are at the height of their family life, with young children, normally at the height of their professional life,” said the president of YPP, which holds meetings between patients, which include physical exercise, psychological intervention and information about the disease.
Carmo Bastos, currently 50 years old, works in a banking institution and because of the illness, he had to stop leading a team to reduce stress levels and not worsen the illness.
The president of YPP, which has more than 400 members, said that the Slowness of movement and muscle stiffness are the most common symptoms of early Parkinson’s disease, “much more than tremor.”
In Portugal, it is estimated that around 20 thousand people live with the disease, recording more than 1,800 new cases per year.
According to Carmo Bastos, around 2,000 to 3,000 people have early Parkinson’s.
