I know a lot of people with Parkinson’s when newly diagnosed (and also later) don’t want to meet others with PD. I know that they are afraid of seeing their own future; horrific symptoms that they think they get themselves down the line.
I know this because I’ve been there; I was newly diagnosed once. Well, to be perfectly honest, I’ve been newly diagnosed twice. The first time with another neurological condition, which years later turned out to be PD.
Anyway, about meeting others with PD: don’t be afraid, do it. BUT: don’t go just anywhere. Do a little research first, make sure the group or person you’re meeting have one or two things more in common with you than PD. I have heard so many stories about PWP in working age that stumbled (or shuffled…) into a group of 70-80 years olds with PD, meeting for a coffee to talk about memories from WW2. Of course, I’m exaggerating a bit but very few of those people ever come to another meeting.
I have been to a lot of PD meetings and get-togethers and I have not regretted going to a single one of them. One particular PD get-together that I will never forget took place in Birmingham last March. It was the first (but I sincerely hope, not last) get-together arranged by the lovely Jacqui of PD Junction, one of the best online PD forums I’ve seen. It was so wonderful to be able to put faces, voices and bodies to friends previously only met online. We Swedes were welcomed with open arms into the UK group and we all had a great time. There were PWP and partners meeting just because they wanted to get to know each other a little more and I was surprised to learn that for several people, this was their first encounter with other people with PD.
There are many situations and conversations from the PD Junction get-together in Birmingham that will stay in my mind for a long time, but one in particular I find memorable. It shows that the best way to handle awkward situations brought about my PD, both for the person with PD and other people is by applying generous amounts of humour. It was during dinner and the first course was being served. Jacqui’s husband Mark saw what was being served as one choice of several and said to her: “Tomato soup at a PD get-together? Are you crazy?”. Jacqui looked at him and said calmly: “It’s OK Mark, I’m wearing a black top.”
For me, the best way of fighting the fear of PD symptoms I don’t have (yet) is meeting as many people with Parkinson’s as possible. Every new person I meet has their own set of symptoms and their own combination of medication. It helps me realise that we are all unique, both as human beings and in our PD. And I’m really looking forward to the end of September, when I will be going to Glasgow to attend the 2nd World Parkinson’s disease Congress. I hope to meet many of you there.