After the DAT scan, I came to the clinic for the first time, I was lucky and two days later I was offered a place. Here I was given the first information about what to expect and how to proceed. I was totally overwhelmed by the situation and didn't want to know anything at all.
My first thought was: what I don't know can't burden me. I wanted to push it away. Hear nothing of the madness. My thought was: please just put me on the medication and leave me alone!
Directory of Parkinson's self-help groups in Germany
Impressions from the PingPongParkinson World Championships in Pula 2022
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
James Parkinson wrongly believed that the disease had no effect on the mind and psyche of those affected.
That was a fatal misjudgment, since new scientific studies have shown that every third Parkinson's patient develops dementia in the course of the disease.
However, this so-called Parkinson's dementia usually only occurs in the late stages of the disease and thus mainly, but not exclusively, affects patients of advanced age
But what actually is dementia?
In the entire complex of the healthcare industry, self-help has now become a fixed 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
while I'm writing the post, I'm sitting on the roof terrace in Barcelona. The Spanish traffic is bustling around me. It is incredible for me to be sitting here today writing this post. Because two weeks ago I had my four-year anniversary: At the end of August 2018 I had my second disc surgery. I can still remember damn well how intense that time was. How frustrated I was that after my first surgery in 2016 I had to go through all the pain, restricted mobility and fears again.
But I have learned in recent years that my Parkinson's can be put in its place with sufficient exercise. Unfortunately, it is not the case that this would be enough as a motivation, because there is still the option of taking half an L of dopa more or if it is difficult to take an LT.
Directory of Parkinson's self-help groups in Germany
Wouldn't it be wise if all self-help organizations, or at least the majority of them, came together to bring much more strength to the streets by acting together?
Nadine Matthes from Parkinson Youngster is trying to do exactly that with her newly founded network PPAN and is by no means met with approval. We asked key players in the scene for their opinions and examined them from different angles in our new format, the Parkinson-Journal Magazin.
Dopamine - a book written by people who live with the chronic disease Parkinson's disease, whether they are affected themselves, relatives or therapists. This collection of very personal stories gives readers different insights into dealing with Parkinson's. The authors are either at the beginning of their illness or they have been affected for years. They report on their experiences, feelings and experiences in dealing with the disease on a daily basis. Just immerse yourself in her sad, serious but also hopeful and happy world.