Affected people report

Living with Parkinson’s: the fight for normality

Eduard Leichtfried and Christa Knechtsberger have been living with Parkinson's for years - they also encourage others.

(Bild: Philipp Stewart)

Vienna's former mayor Michael Häupl has now made his Parkinson's disease public. What does a Parkinson's diagnosis mean? We spoke to those affected about living with the disease and the challenges of everyday life. 

Parkinson's is like an invisible dance partner that suddenly takes over your life. It forces you to take new steps that you haven't rehearsed, to rhythms that throw you off balance. "At first I thought my life was over," says Christa Knechtsberger, who was diagnosed around her 70th birthday. The first signs: an irregular stride, a slow left hand. But instead of giving up, she decided to tame this uninvited dance partner. Today, seven years later, she says: "I'm the one who sets the pace."

"Life was dark for me for a short time"
But the path to this attitude was not easy. When Christa Knechtsberger was diagnosed with Parkinson's, she felt like she had been knocked on the head. "It was dark for me for a moment. But then I thought: bowel cancer or breast cancer would be worse. So I make the best of it." Today, she lives an active life. Cycling, swimming and regular rehab stays on the Gmundnerberg keep her fit. Knechtsberger: "Exercise is the be-all and end-all." The illness does affect her everyday life, but she has learned to deal with the restrictions. "Everything is a bit slower, but that's also the case for people without Parkinson's in old age," she says pragmatically.

Noticed after an accident
Eduard Leichtfried has also been living with Parkinson's for several years. In his case, the disease came to light after a traffic accident. "Suddenly I could no longer move my right hand properly," he explains. The diagnosis was a shock, but like Knechtsberger, he has decided to continue living an active life.

hristian Pulpan, Chairman of the Vienna Self-Help Association, wants to create even more services.

(Bild: Philipp Stewart)

Self-help association

The Vienna Self-Help Association wants to support those affected and their relatives with information, hands-on programs and regular meetings. Further expansion of the program is also planned. Information at www.parkinson-selbsthilfe.at

"You don't have to hide"
As a local councillor in his home municipality in Lower Austria, he has been involved in social projects for years. "You don't have to hide," he says. His wife helps him to keep fit by dancing and doing specific exercises. "It helps when you see examples like Christa. It motivates you to do more yourself," he admits. Both are particularly impressed by krone.tv star Philipp Jelinek. Knechtsberger: "I do the exercises every morning and notice how good it does me." For many of those affected, this low-threshold offer is an important contribution to fall prevention and general well-being.

"Philipp bewegt" on krone.tv is a fixed date for many.

(Bild: Urbantschitsch Mario/Mario Urbantschitsch)

Self-help association offers hands-on programs
An important anchor for many Parkinson's sufferers is the self-help association. Christian Pulpan, chairman of the association, is aware of the importance of community: "Many people withdraw after the diagnosis, which is fatal. We have to motivate them to stay active." The association offers exercise and participation programs in Vienna.

Facts and figures

• Parkinson's is the second most common neurodegenerative disease after Alzheimer's dementia. There are 20,000 to 30,000 people affected in Austria.
• The disease usually occurs in the second half of life, but can also affect younger people. Around 1600 new cases are diagnosed in Austria every year.
• According to forecasts, the number of people affected could double by 2040.

Expanding the range of services
Knechtsberger himself regularly attends events and is impressed by the power of the community. "The self-help groups are a great thing. You feel understood and supported." However, not all groups are easily accessible, which is a challenge for many sufferers. This is where the association comes in, in order to create offers across the board. Pulpan is working on further expanding the self-help groups in Vienna. He is planning a new contact point in the 22nd district in particular: "Not everyone can travel long distances. It is important that those affected have services close to home."

Currently no cure possible
Despite advances in research, Parkinson's remains a disease with many facets. "The medication slows down the symptoms, but movement is what improves everyday life," says Knechtsberger. However, falls are one of the biggest dangers. "One wrong step can have fatal consequences," warns Pulpan. This is why many of those affected have designed their homes to be barrier-free. Level-access showers, wide doors and walking frames are part of everyday life for many.

A little more support would be helpful
Leichtfried is already thinking about conversions. "I'm thinking about installing a lift so that I can stay mobile in the future," he says. Such measures are often expensive, and support is usually only available from a higher care level. Nevertheless, he emphasizes how important it is to make provisions early on. "You know it won't get better, but you can prevent it from getting worse." Christa Knechtsberger and Eduard Leichtfried show that Parkinson's does not mean the end. "You don't need to be afraid," says Knechtsberger. "Life is what you make of it."