Parkinson's at 40? Not an isolated case

Isabelle Hienckes can hardly remember a time when she wasn't shaking in stressful or exciting moments. This has been the case for her since she was a teenager at 16 or 17, especially in social situations. "I never paid much attention to that, " she says, even if it meant she never dared to speak up or join in with anything. "I was always the one who held back because I had no control over my body." We are sitting on her terrace on a sunny afternoon, the cat purring on the chair next to her. Just over three weeks before our meeting, Isabelles Hienckes took to the stage at the Centre Atert in Bertrange to tell her story as part of an event to mark World Parkinson's Day. A story that deserves even more attention.

Parkinson's despite being young?

The diagnosis of Parkinson's was a liberating blow for her. She only received it at the age of 44, but not before. On the one hand, she had already lived with the disease for more than half her life without realising it, and on the other, 44 is a very young age for Parkinson's patients. Society associates Parkinson's with older people. However, it is not that rare for young people to develop the disease. According to the National Centre of Excellence in Research on Parkinson's Disease (NCER-PD), around 4,000 people in Luxembourg have Parkinson's disease – a figure that is expected to double by 2050. "According to international studies, ten per cent of those affected are younger than 40," says Isabelle Hienckes. This means there should be around 400 young Parkinson's patients in Luxembourg. "Where are they?" asks Hienckes. She suspects that it is difficult for many of them to come out; they try to hide their illness. "As a young person, you are under pressure from society to function. You might have children who you don't want to be ostracised, you don't want to get into trouble at work."