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A plea for the self-help groupA contribution by Nadine from the book TeamDopamine / The dopamine book |
A major reason why this is so is that research has made almost no noticeable progress in recent years. There are promising approaches here and there, but we are still years away from slowing down or even stopping the process.
Reason enough for me to occasionally pick up the dopamine book and browse through the hundreds of articles by a wide variety of authors. From time to time, I will post and comment on some of what I consider to be the most notable articles here. If you are interested in the book, you can purchase it on Amazon. If you are satisfied with the online version, you will find what you are looking for here in the Parkinson Journal and simply enter the search term TeamDopamin in the search mask.
My reference today is a plea for the self-help group, which I would like to recommend to all those who are still hesitating and hesitant to join a self-help group.
Munich, October 18.10.2022, XNUMX, Jürgen Zender
SUPPORT GROUP
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!
It worked well for the first few days, but then the doctors could no longer take my personal decision into account. They said they need to talk to me about the side effects, talked about impulse control disorder and of course other things you don't want to know. That was the first moment of desperation, the thought of this being my “future” made the tears flow.
The Parkinson's Nurse spent a lot of time with me, telling me things that gave me hope, but also things that added to my anxiety.
She said that I should definitely look for a self-help group, because the exchange among each other is worth its weight in gold. Now the problem is that at 36 you are young, she said, and finding a group will be a challenge. The option I had would be an online group, that's how I got JuP (Jung and Parkinson's). Online help has meanwhile also become private and personal help.
And yes, the exchange among each other is worth its weight in gold, you get tips here and can exchange information with each other. You can also pick up the phone and cry because the other person has almost the same problems. Much of the information you get from the people in the group you won't get from the doctor.
Furthermore, you get to know new people who you would probably never have met without this diagnosis. Of course, the reason why the paths crossed is not the best, but now it is and I am very happy about the many people I was able to get to know along the way. And I can only say thank you for the time, patience and support you give me.
And who knows, maybe ten years from now I'll be the one who can help a young person understand and show them that it's possible to live with Parkinson's.
Even after almost eight months I still don't understand everything and I still need help, but I'm working on understanding things.
At the end there is only one thing left to say:
THANK YOU ALL!"
Dini (The author wishes to remain anonymous)
"A major reason why this is so is that research has made almost no tangible progress in recent years."
Why not!?