Two self-help groups worth mentioning have recently started.
On the one hand, there is the Facebook community "It wasn't planned that way". The Facebook group only accepts members under the age of 55 and is therefore aimed at the ever-increasing number of people diagnosed with Parkinson's at a young age.
The moderator Nina Juncker, mother, working pharmacist, herself suffering from Parkinson's disease at a young age, knows the problems of these PmPler* only too well from her own experience. *PwP = person with Parkinson's disease
There is the first shock after receiving the diagnosis, which one has to cope with, there are the difficulties in reconciling work, family, friends and illness, or the inhibition threshold to join a self-help group in order to take a look at one's own having an uncertain future in mind and the question "How do I tell my friends, my employer, etc."
So there is enough material for a non-binding exchange of opinions and mutual support in a forum set up especially for this purpose.
We, the Parkinson Journal team, wish Nina every success in her ambitious project.
The next self-help group that was newly founded and which we want to report on is the THS Regulars' table in Munich around the founder Karin Grote.
Within a very short time, the group has grown to 15 members, some of whom have had DBS or are considering undergoing DBS.
The exchange of ideas is extremely important for both sides. For example, some want to know in which clinic you can get the best settings, how the intake of medication has been reduced and then possibly increased again, while others are interested in the risks and possible side effects of such an intervention first-hand.
I am part of this group myself and can only recommend anyone who has already had DBS to look for like-minded people and start their own group.
Jurgen Zender, in October 2022
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