A contribution by Jürgen Zender
Parkinson's Self-Help Directory, the missing piece in the puzzle
In the book "Dopamine" I found the following clever sentences:
“In the entire complex of the healthcare industry, self-help has now become a permanent and important element. For many patients, it is an offer without alternative, under the conditions of an often serious or chronic illness, not to be left alone. Self-help is not selfish, but essentially lives from sharing in the problems of other people. The former French President Mitterrand, who himself had cancer and has since died, once put it aptly when he said: "One's own fate is somehow tolerable, that of others is no longer so."
Self-help is the desire for contact, for communication and exchange, for talks at eye level and the knowledge that you are a member of a community of solidarity in which you don't have to explain yourself, because the members of a self-help community know how you are doing. This mutual understanding, giving and taking in fair dialogue, can only be achieved by the patients themselves. This is why the existence of self-help groups is so valuable and so important.
Who of us affected, Parkis, PwP'lern - whatever we (let) be called - would like to contradict these words?
The numerous smaller self-help organizations that focus on younger patients seem to me to be particularly important. It doesn't matter whether they are small regional self-help groups that - even if it's just a regulars' table for younger people - offer a community experience. Or whether it is a fast-growing club like PingPongParkinson, which now has well over a hundred bases and over 800 members. Between these two poles there are other self-help organizations that are growing nationwide, such as "Jung und Parkinson", "Parkinson Youngster" or the exclusively online "ParkinSonline". Even the "JuPa's", the dependent offshoots of the dPV for young people with Parkinson's disease, give cause for hope, at least where they were able to develop their offer independently. I would like to name JuPa Rheinlandpfalz Süd as an example of perhaps a dozen active and successful JuPas, without wanting to belittle the performance of the other active JuPas.
Of course, among the numerous non-organized pwp learners there will be quite a few who do not need any help. Because they have a sufficiently supportive social environment, for example, or because they are quite content and happy with the self-imposed isolation.
The Parkinson-Journal with its 85.000 page views since January 2022 and comparable online offers seem to be able to at least satisfy the information needs of this group.
All others have so far been dependent on Google in their search for a suitable self-help organization, which can lead to the strangest results with the inscrutable hit list algorithm.
We would like to help reduce this deficit, if not eliminate it.
The way to get there is via the directory of Parkinson's self-help groups, which has been activated since today and which, by the way, can only work if everyone involved maintains their data and keeps it up to date - which I sincerely ask for in the interest of all of us. (please refer https://parkinson-journal.de/selbsthilfeverzeichnis click on “data maintenance”.
The self-help directory can not only be reached via the main menu of the Parkinson Journal, there is also an independent domain parkinson- selbsthilfeverzeichnis.de)
More steps will follow, but more on that elsewhere.
Greetings from Munich and stay active, Jürgen Zender
Jurgen Zender, Parkinson's Journal 07.09.2022/XNUMX/XNUMX
Dear “makers” of the Parkinson Journal!
Your pages are very informative. Many thanks for that.
Even if you, as a young patient, first want to get an overview and still shy away from direct contact, you will find a lot of valuable information here that goes beyond the usual tips.
You show how important “self-help” is for those affected in the course of the disease. I find the approach very constructive and have learned from my own experience how important it is to take my life back into my own hands after such a diagnosis and to actively work on my remaining health.
You describe the self-help group Parkinsonline as follows
"ParkinSonline", which is only active online.
I myself have been active there for years. We host workshops, annual meetings, breakfast meetings and some local self-help group meetings.
In this respect, we don't quite find ourselves in your description.
I hope I. In this place correctly with my comment.
Shouldn't be a criticism, just an addition" to your description
Best regards,
Gabi
Hello Gabi, but that's exactly what it says, you just have to scroll further to the right in the line, there is the column we about us and there it says exactly what you mean. I have now pulled the column above us further forward so that it can be recognized immediately. If you want to test this, you have to reload or refresh the page. But it's even easier if you click in any field of your self-help group and then press the spacebar, then you can see all the data at a glance. Greetings from Munich, Jürgen