In May this year, we supported the Ping Pong Parkinson German Open as a sponsor and were on site in Nordhorn. At the event, we interviewed two members of our Early Access Program who have been using our Neptune Care solution consistently for over a year.
Read on to find out how they deal with their diagnosis and challenges and how Neptune Care and Ping Pong have helped them.
Diagnosis and initial challenges
T.G.: I was diagnosed with Parkinson’s in the fall of 2017. This news fundamentally changed my life. Impairments that I had previously perceived as temporary now became part of a larger, frightening overall picture. The feeling of losing control over my own body. The end of self-determination and autonomy. The end of the world. So the biggest challenge was to accept that I was suffering from a currently incurable and progressive disease. Once I had come to terms with this new reality, I was able to deal with my situation proactively. From that moment on, I was no longer a helpless victim, but was able to actively shape my life again and take responsibility for it.
K.L: I was diagnosed in January 2014. It was also difficult for me at first to cope with the changes in my everyday life. It’s better to ask what hasn’t changed. The biggest challenge is learning to feel what your body is trying to tell you.
Changes in everyday life
T.G.: In the years following the diagnosis, almost everything in my everyday life gradually changed. Parkinson’s is a systemic disease that affects many aspects of daily life. Every activity, whether it’s getting dressed, cooking or paying at the supermarket checkout, requires more effort and time. It is a constant adaptation to new challenges.
K.L.: My everyday life has changed a lot since the diagnosis. Adapting to the new physical limitations was difficult, but necessary. Everything, from simple daily tasks to more complex activities, had to be rethought.
Table tennis as therapy
T.G.: In 2021, a few months before the first German Open in Nordhorn, I started playing table tennis through an acquaintance. When I heard about PingPongParkinson at parkins-on-line.de, I became a member straight away. Table tennis is now part of my everyday life and helps me enormously in dealing with my illness. TT increases my mobility, responsiveness and fitness – both physically and cognitively. In addition, Ping Pong Parkinson’s (PPP) and table tennis have significantly expanded and intensified my social contacts.
K.L: I took part in PingPong Parkinson’s for the first time in 2021 without knowing anything about the sport beforehand. Table tennis not only helps me physically, but also gives me a sense of belonging and activity. I learn a lot from what I see and hear, and it strengthens my social connections.
Neptune Care: a valuable tool
T.G.: I became aware of Neptune Care via the parkins-on-line.de platform. I have been using the sensor for about a year and find the monthly evaluations particularly interesting, as they show me trends, e.g. whether my medication is set correctly. Although my Parkinson’s is not yet very advanced, I can see the potential of Neptune Care, especially in more complex situations.
K.L.: When I announced that I would be cycling to the World Parkinson’s Congress in Barcelona in 2023, I was asked to wear Orbit’s sensor and use Neptune Care. I have now been using it since June 2023 and find the insights gained very instructive. I hope we can continue to work on expanding the possibilities.
The benefits of Neptune Care
T.G.: The information I get from Neptune Care helps me to better understand my daily “functioning” and, for example, to adjust the times at which I take my medication. This data could also make communication with my care team easier in the future. At the moment, I see myself more as a data collector for training the Neptune system.
K.L: The data from Neptune Care facilitates communication with my care team, especially with the physiotherapists, who are very enthusiastic. My neurologist was skeptical at first, but the continuous data collection has shown how helpful this information can be.
Self-management with Parkinson’s
T.G.: Self-management is essential and invaluable for your own well-being. The more complex the situation becomes, the more helpful Neptune Care could be. It can be a great help in self-management, especially for people who are less active in dealing with their condition.
K.L.: Self-management is invaluable for one’s well-being. Neptune Care is a great step forward in self-management, especially for those who want to actively monitor and improve their health.
Conclusion
Although Parkinson’s brings profound changes and significant challenges to everyday life, through activities like table tennis and Neptune Care, people with Parkinson’s can proactively manage their condition and gain back control. This journey of self-management is extremely rewarding.
