April 11th has been chosen as World Parkinson’s Disease Awareness Day. Parkinson’s affects about 9 million people worldwide. It is the second most frequent neurological disease, after stroke. In Brazil, the projection of population aging may make it more frequent.
At age 30, retired scientist Danielle Lanzer began to feel a vibration in her left hand shortly after surgery for appendicitis. “It wasn’t visible, but it got in the way of my work in the lab.” Today, at age 46, Daniela is diagnosed with Parkinson’s, a degenerative neurological disease that affects about 2% of the world’s population. In Brazil alone, there are about 500,000 people living with the disease.
The path to identifying Parkinson’s was long: it took six years of many tests and misdiagnoses. “I was diagnosed with essential tremor, depression and even suspected Wilson’s disease,” says Danielle. When she met a movement disorder neurologist, he detected that it was Parkinson’s. “But I was already taken by symptoms. I had a lot of difficulties even for self-care: I couldn’t wash my hair by myself, I couldn’t brush my teeth, depending on the type of clothes, I couldn’t get dressed. Need help cutting meat. Basic things, sometimes, I couldn’t do. It was causing me depression,” she reports.
Cases like Danielle’s, who began to develop symptoms at age 30, are rare. Most often, Parkinson’s begins to manifest after age 60. “It is a disease that is related to brain aging”, points out neurologist Roberta Saba, coordinator of the scientific department of movement disorders at the Brazilian Academy of Neurology.
The specialist clarifies that there is no specific reason for the development of Parkinson’s: “There is a combination of genetic and environmental factors that can make an individual develop or not develop Parkinson’s disease.” Parkinson’s develops from a deficiency in the production of dopamine, which is a neurotransmitter that conducts nerve currents throughout the body.
The resident of Itapaci (GO) Celita Machado believes that the genetic factor influenced the development of the disease. Five years ago, at age 64, she began to experience more evident hand tremors, associated with forgetfulness and sore throats. The throat muscles are already more rigid and, therefore, she is followed up with a speech therapist and also practices physical exercises. “The day I do Pilates I feel much better”, says the retiree.
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Much more than tremors
Parkinson’s tremor is not caused by any movement, it also appears when the person is at rest. “Not everyone who trembles has the disease and not every patient with Parkinson’s disease trembles”, explains the neurologist.
In the case of Danielle Lanzer, there is no tremor, but a slowness in movement, a symptom present in every Parkinson’s patient. There may be changes in the voice, the person changes the writing, there are changes both in the motor part and in the way of walking. In addition, there may be changes in sleep and depression. “Symptoms start out very subtle and progress slowly. As a result, people get used to those alterations and, sometimes, it is only after one or two years that they realize that something is wrong and seek medical help”, says neurologist André Sobierajki. member of the Brazilian Academy of Neurology.
- slowed movements
- Body pain
- Changes in gait (walking)
- Changes in sleep (restless sleep, talking in your sleep, having sudden movements)
- Difficulty smelling
- Memory loss
Parkinson’s is a disease that has no cure. “I actually tell my patients that they are not going to die of Parkinson’s. He’s going to die with Parkinson’s,” says Dr. Sobierajki. That’s because Parkinson’s does not cause death, but the progression of symptoms and muscle weakness can lead to falls, pneumonia. “It is necessary to pay attention because it is a neurodegenerative disease and must have an individualized treatment”, adds Dr. Roberta Saba.
There are specific medications to specifically treat Parkinson’s like Alevodota and Prolopa (levodopa + benserazide). But the patient who suffers from the disease usually makes use of associated medications to treat symptoms, such as anxiolytics and pain medication. The treatment is multidisciplinary, in addition to the neurologist, the presence of a speech therapist, physical therapist and psychologists is common.
“It is a disease that requires time and a lot of investment”, says Danielle. Ademar Vasconcellos is 72 years old and was diagnosed with Parkinson’s in 2018. In addition to health insurance, he usually spends around R$2,000 a month on medication, cranial magnetic stimulation and medical fees. “As the disease is degenerative, it becomes a struggle. As long as the medicine takes effect”, says Vasconcellos.
Danielle says that she learned to live with the disease and that there are better days and others with more pain. Today, in addition to therapies, she also practices singing. “It generates a lot of pleasure and, when you feel pleasure, some of the cells in the nervous system end up producing dopamine. So it helps me a lot and improves my voice and diction,” she comments.
At the beginning of the symptoms, Danielle had a lot of difficulty with social life. “You feel inferior for not having the same skills and conditions to do activities at home, at work”. Today, already adapted, she is one of those responsible for the movement “Vibrating with Parkinson’s”. Through the movement, they managed to overturn a 2017 regulation that removed the benefits of reducing the value of the drug for the treatment of the disease for people under 50 years old.