Meeting others with PD

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.

New symptom or not?

I consider myself very lucky for a lot of reasons. To name them all would take up more space than I have been given, so I will limit myself to my PD-related luck this time.

I am sure that there are people that would probably argue that experiencing the first symptoms of PD in my teens would be very far from luck, no matter how you see it. Well, I can only agree…

The same would probably go for not getting a correct diagnosis until some 18 years later. But here I must beg to differ. I consider it very lucky that I wasn’t diagnosed with a neurological disorder mainly associated with old people in my teens. I am certain that it was better for me at the time not really knowing what was going on with my body and why it didn’t always do what I wanted, even though I can assure you that I didn’t think so then.

I think it would have been a real stigma having had a PD-diagnosis hanging over me all that time. Because what would have been the point of it all?

Most neurologists will tell you that with PD you will have 5-10 good years when the drugs do what they’re supposed to and you will be able to live more or less the life you did before. However, after 10 or so years, you will be likely to come into the fluctuating phase, when your wellbeing will be difficult to predict from day to day and even during the course of the day… Or so they will tell us……. That is a whole blog of its own….. or a whole book……

For the time being, picture in your mind what would have happened to a 15-ish years old girl being told she has a condition that would be likely to render her totally incapable of controlling her body in 15 years time. If she’s lucky, she might get 20 years of independance before she’ll be cared for by her mother and father, like she’s a baby again. Would anyone expect such a girl to make the effort of finishing school? Going to university? Getting a drivers license? Getting a job? No, I didn’t think so and neither would I.

Looking back now on 25 (and counting…) years of a lot of hard work but also a WHOLE LOT OF FUN and rewarding experiences, I wouldn’t want to have it any other way. If I had been told at age 15 that what made my body disobediant was PD, chances are I would not have the world’s most beautiful daughter and the best hubby possible today, so that’s why I consider myself very lucky indeed for having had the wrong diagnosis for such a long time.

I also consider myself ever so lucky for having such a slow progression in my PD. A ”fellow sufferer” (I really don’t like that expression, but maybe it sounds better to an English ear than to a rude Viking decendant?) told me (with a distinct twinkle in his eye) that I was ”a sorry excuse for a person with Parkinson’s” and that I should ”be ashamed of myself” for being so little effected by having PD for such a long time. Of course the telling off did me a lot of good, in fact, I consider it one of the finest compliments I ever recieved.

On a slightly less positive note, I have during the last few months, with increasing worry, discovered what I think is a new PD-symptom. When I am excited, afraid, angry or startled, I tend to start to take very fast, very small steps, to the point of almost falling at times. I am, of course, concerned about this, but decided to try my best not to take out anything negative in advance. That never did anyone any good. Instead I have decided to observe and try to work out a way to learn how to avoid those silly small steps.

“Is Parkinson’s contagious?”

The apple of my eye is a 4 ft tall, 45 lbs creature with brown-green eyes and blonde hair, a very strong will and views of her own (I really can’t understand where she got those, I still have mine left…). Her name is Frida, she turned 7 last January and she’s my biggest fan as well as I’m hers. I dread the day she becomes a teenager, considering the clashes of wills that have already taken place while her loving father and my darling hubby tries to avoid ending up with permanent tinnitus from the loud noise. Frida is quick, both in body and mind, she loves to run and climb and she collects things whenever she gets a chance. If I hadn’t given birth to her myself, I’d think she was a squirrel… a  very large one… with no tail…

From Frida’s point of view, I have always had Parkinson’s, it’s a natural part of her life, for good and bad. I have never tried to hide anything about it from her, she sees me take my medication and we talk openly about PD at home. No wonder that she has questions at times and wonders about this ”thing” that makes her mother so tired occasionally. One morning when she was about six years old, we were getting ourselves ready to go to daycare and work, respectively, and she suddenly asks me: ”Mummy, is Parkinson’s contagious?”. I stopped what I was doing and realised that today we might be a little bit late, because this was something we had to talk through. I realised that she must have heard about Parkinson’s disease and figured that most diseases are contagious, so could she get Parkinson’s from being around me??? We sat down and had a long talk about what PD is like, how they don’t really know why some people get it and other’s don’t and that clever people all around the world are trying to find a cure. It was one of those moment that I will remember for a very long time.

About six months later, Frida and me were on our way home from school and out of the blue she says: ”Mummy, I’m so glad you got Parkinson’s!”. I thought: ”f*****g hell, my daughter has completely lost her mind!”, but managed to transform it into a neutral enough: ”Oh, how do you figure that?” ”You see Mummy”, she said, ”if you hadn’t gotten Parkinson’s I wouldn’t be friends with Annika!”. Annika is one of my ”PD-buddies”, she turned 50 last year and she and Frida really like eachother. You can imagine how glad Annika was when I told her what darling Frida had said…

So, at the end of the day, Parkinson’s is not contagious but it can give you new dear friends to the whole family.