Travelling to WPC 2010

My journey to the World Parkinson’s Congress in Glasgow could definitely have had a better start. I was travelling with my PD mates: Annika and Lars and we had done the sensible thing when catching a ridiculously early flight: we stayed the night at the airport. How I wished that I also had been sensible enough to check my passport before going to sleep…

I learned the hard way that there is NO WAY that they will let you on an airplane carrying the passport of your 7 year old daughter. Consequently, my poor husband learned the hard way what 6 am on a Sunday looks like. He was met at the Arlanda Express fast train two hours later by a VERY grateful wife carrying a brand new single way plane ticket to Edinburgh wearing a face blushing with shame.

After spending another few hours at the airport waiting for my plane, wondering if Annika and Lars had already had their first taste of any Scottish delicatessen and feeling a bit sorry for the Thai berry-pickers sitting in the departure hall (Thai men and women are every year drafted by Swedish berry-picking companies to travel from Thailand to Sweden and pick lingonberries and blueberries in exchange for very little money. Also, the Swedish berry-picking companies charge an arm and a leg for transport and accommodation, so the poor Thai don’t return to Thailand as rich as they expected to. The world is filled with cynical people…). Finally, I was boarding the plane, only to find myself back on a chair on the inside of the gate half an hour later. The reason was a malfunctioning gyro somewhere on the plane. We passengers waited patiently for an hour and then re-boarded the plane. This time I probably sat in my seat (25C by the way) for a full half hour, before the captain announced that the gyro was now exchanged for a new one.” However”, he added, “we have another problem, totally unrelated to the first one: one of the brakes isn’t working. Unfortunately, this plane will not fly to Edinburgh today.” Every single passenger on the plane let out a sigh of disappointment that was followed by a smaller sigh of hope at the news that another plane would land on the adjacent gate in ten minutes time. That plane would be taking us to our destination after refueling, relocating our baggage and checking the vitals on that plane.

I felt a distinct sense of déjà vu when walking from the plane towards the gate again and hoped that the next time boarding would be the last time I used my boarding card for this journey. Luckily, my prayers were answered and after a bumpy but otherwise uneventful journey on the Edinburgh bus 100 from the airport to Haymarket, I finally caught up with my PD-friends, about 8 hours late and not in the best of shapes in terms of stress and PD.

The day after, we took the train from Haymarket station in Edinburgh to Glasgow and had our first glance of the “armadillo” that is the big lecture hall of the Scottish Exhibition and Conference Centre (SECC) where the second World Parkinson’s disease Congress was being held. We were looking forward to the congress and wondering what the week would bring. I don’t know about Annika and Lars, but for me, the days in Glasgow forever changed my life.

Sara (aviationally challenged)

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.