The best known image of Parkinson's is that of someone who trembles, but 30% of affected people do not develop tremor. Parkinson's also has non-motor symptoms, sometimes more disabling, which, because they are not known, delay diagnosis.
Antonio discovered his disease at the age of 71, due to a REM sleep disorder. A year after the diagnosis, he was referred to neurology, where it was discovered that the disorder was a symptom of Parkinson's disease. At the moment he has no other motor symptoms: "as I don't tremble, some people don't believe I have Parkinson's".
Shortly after his diagnosis, he contacted the Spanish Parkinson’s Federation to become a volunteer, and today he coordinates the organisation's volunteers. In his local association he does therapies and contacts other people living with the disease.
Although it may seem like a disease of older people, one third of people with Parkinson's are of working age. The diagnosis raises questions: will I still be able to work, should I share it at my job?
Communicating the diagnosis is a personal decision, but it can help us to be better understood and to make the necessary adaptations.
Gladys was diagnosed in 2015, although she had had symptoms for five years. Being so young (she was under 50 at the time) made her diagnosis difficult.
By then, Gladys had already been working at the same place for 15 years, and communicating the disease made it easier for her to continue working: "my bosses make it easy for me to go to the doctor, attend tests and go to the association".
Gladys does a lot of sport, such as swimming and tai chi at her local association, to keep the symptoms of Parkinson's at bay. She told us that her brother also lives with Parkinson's in her home country, Ecuador, and that, unfortunately, the care he receives there is much poorer than what she has.
Approximately 3 million women are living with Parkinson's, but there is very little research on how drug treatment affects menstruation, menopause or pregnancy.
Marta always wanted to be a mother, but at the age of 32 she was diagnosed with Parkinson's and her dream seemed to be in jeopardy. The lack of information about pregnancy in Parkinson's disease prevented her from getting pregnant with confidence.
It was her local association that put her in touch with a neurologist, who accompanied her through the process, protecting her health and that of her baby. It was not an easy process: most of the health professionals she encountered did not know how to advise her because of the lack of research.
Fortunately, Marta is now the mother of Victor, a healthy and happy one and a half year old boy. She told us that she would like to "be an example and support for other women with Parkinson's who want to get pregnant".
A diagnosis of Parkinson's affects the person who receives it, as well as the people close to them.
They end up becoming their main support in accompanying and caring for them. This is the experience of Baudilia (Gladys), a woman from Tenerife who has been caring for her husband with Parkinson's disease for 32 years. When he was diagnosed, the lack of information and resources made it difficult for them to cope. They soon met other families on the island living with the disease, and together they founded the Tenerife Parkinson's Association.
Baudilia (Gladys) demands more recognition and support for carers like herself. "Those of us who are around her are also part of the disease, we also experience it. We carers also need care and professional support".