With the Parkinson's Association eV is becoming a heavyweight player in the field of Parkinson's self-help.

While the German Parkinson Association eV, as the largest Parkinson's patient representative in Germany, has to focus primarily on cleaning up after its financial scandal, the number 2, PingPongParkinson Deutschland eV, has set the course for a completely new cooperation model in the background. 

The PingPongParkinson Deutschland eV has transferred its self-help area into an independent association, the Parkinson Verbund eV, and created this as an overall association. (Editor's note: “General associations” are particularly organizational structures in which an association (main association) is subdivided on one or more levels and the subdivisions in turn have the status of a registered association within the meaning of Section 21 of the German Civil Code (BGB) or an unregistered association in the within the meaning of § 54 BGB (branch associations) or are non-profit companies).

This structure gives the Parkinson's Association the opportunity to quickly expand the key players in the field of Parkinson's self-help into a large and powerful network.

This will also be necessary, because the Parkinson Association has set big goals of its own. Thorsten Boomhuis, the first chairman of the association, said: “We want to quickly expand the 180 PingPongParkinson bases in addition to self-help bases, integrate further branch associations and enter into collaborations. In addition to the classic self-help work in the region, the aim is to close the major gaps in the care of Parkinson’s patients.” Boomhuis sees the biggest weaknesses in the current system in the interdisciplinary training of therapists and the informed patient as the manager of his illness. The complexity of Parkinson's disease in particular requires the patient to actively think and help shape things, and we are still a long way from that in Germany. The third major issue that needs to be addressed, according to Boomhuis, is the support and care of those diagnosed for the first time who, left alone, risk being lost in the impenetrable jungle of our health system.

According to Jürgen Zender, the board member responsible for departments and cooperation in the newly founded association, numerous important players joined the entire association as departments, branch associations or cooperation partners in the run-up to the founding meeting that took place just two days ago. At department level, these include the Parkinson Journal with over 300.000 page views per year, the online information platform for Parkinson's sufferers and their relatives, PingPongParkinson Deutschland eV with 1400 members and 180 bases, which is already a heavyweight in itself, parkinsonpate.org - an already established nationwide infrastructure for Parkinson's sponsors, and Jürgen Kotterer with his nationwide Qigong offering. At the cooperation level, discussions with “ParkinSonline”, “Jung & Parkinson” and Mirko Lorenz from TaiJi Therapy are nearing completion. We have been in close contact with the Parkinson's networks, which see themselves more as therapist networks, for a long time.

The German Parkinson's Association is open to discussions, which, according to board member Zender, opens up completely new perspectives for self-help in Germany. There is hardly any overlap between the 180 potential self-help bases of the Parkinson's Association and the large number of regional associations of the German Parkinson's Association. Even where they exist, it would be a good idea to act not in a competitive manner, but rather in a cooperative manner and to combine the two very different offers in a meaningful way.

The membership fee is so low at one euro per month that it is quite conceivable and sensible for those affected and their relatives
Nothing stands in the way of double memberships.

The list of founding members, for example:

Prof. Dr. Tobias Waechter (Head of Neurology Bad Gögging)

Prof. (apl.) Dr. Klara Brixius (Institute for Circulatory Research and Sports Medicine, German Sports University Cologne)

Dr. Rahel Müller (Senior Physician, Neurology, Augsburg University Hospital)

Prof. Dr. Dirk Woitalla (neurologist, medical director, Catholic Clinics Ruhr Peninsula, Essen)

Prof. Dr. Karsten Witt (Head of Neurology, Protestant Hospital Oldenburg)

show very clearly that both research and clinical practice in Germany are very sympathetic to the project.

But such illustrious names as Konstantin Wecker (songwriter) and Nick Trachte, Vice President of the Bavarian Boxing Association, are also signaling their support for an important step in Germany's self-help landscape as founding members.

Conclusion: It will be interesting to see whether the Boomhuis / Zender duo will succeed in bringing about the often-requested merger of self-help in Germany and thus open up completely new perspectives for those suffering from Parkinson's and their relatives.

Jürgen Zender, September 2023, Munich