The first diagnosis

My previous blog ended: "I did not get back to them", and I did not.

However, my mother did. In my medical record I found that exactly 2 years after my first visit, my mother called the clinic, worried about my deterioration. I was given another examination in October of 1989 and in the record I can see the professor's words: "...at the exmination today, as previously noted, a dystonic cramp is observed... relatively distinct extrapyramidal symptoms.... dystonian in nature....".

I was sent to a number of examinations: MRT, eye exam, EEG... My memory from this occassion is that the professor said that "well, now he could see that I did have some sort of neurological problem and it was probably something called generalised dystonia". His assessment was that the symptoms were not difficult enough as to justify medication at this point. At my visit the day before my 20th birthday, he saw fit to give me my first medication and when starting taking it, I felt like a completely new person. For the first time in literally years, my body actually responded to commands, I could walk as a "normal" person. I felt strong, happy, I felt truly alive!

The initial boost-effect lasted about a week. The medication still had an effect though, it was just not as strong as in the beginning. I got on with my life, at the time being a student of chemical engineering, tried my very best to see the positive things in life. Which was actually not very difficult, seeing I was in love :-). I had just met the man who 17 or so years later became my husband (as well as the father of my child... although since that happened before marrying, let's not make a big deal of that...). This was in the early days of the internet (yes, I am that old...) so I did my fair share of searching for information on this mysterious disease (a disease that for some peculiar reason responded positively to medication for Parkinson's Disease... who would have guessed...).

Generalised dystonia was the first diagnosis I was given for what troubled me... but not the last.

The first meeting

I think I was around 13 years old when I first realised that my body did not function the same way as others’, I might even have been younger. I remember sitting on a chair in a school, community centre or something similar in the village of Ängersjö in the north of Sweden listening while my relatives played their dance music with violin, accordion and vocals. It might have been the winter break and my family were in Härjedalen. The music was good and people were tapping their feet with the rhythm. I tried to follow their example, but I remember my surprise when my ankle refused to respond. I did my best to hide it so that nobody would notice.

Years passed and more things were gradually added to the list of things I had trouble doing: Why were my wrists so difficult to move? Why did I sometimes find it very hard to balance my bicycle? Why did I have such a hard time at physical education at school? Why did I move so slowly? Why were my muscles so tense and refused to relax?

I think that subconsciously, I chose to cope with the non-compliance of my body by asserting myself intellectually. My mind could take me where my body would not. I read constantly, I read everything I could find and I read faster than anyone else.

When I was about 16, I met my first neurologist, an associate professor at the Karolinska Hospital in Stockholm. I requested my patient records a few years ago and they contain his assessment from June 9 1987: " ... . Referral due to tremor and balance problems ... Assessment: hard to evaluate ... Possibly a mild form of dystonia ... not particularly alarming symptoms at present... Patient was instructed to contact the clinic if the problems would increase ... ". I can honestly say I do not remember much of the meeting, but I remember the way the professor expressed himself, he said: "There is nothing wrong with you, your problems are psychosomatic, but please contact us if you get worse."

 I did not get back to them.

Downhill skiing

I don't presume to have a lot of regular readers and probably fewer still will have followed me from the beginning. Which is why I would not assume that anyone remembers at what age I had my first PD symptoms. However, for some strange reason they coincided in a slightly alarming way with the first time I was trying downhill skiing. I was in my early teens and for some reason, my parents had decided that the family would spend Christmas in the Swedish "alps", having a wonderful time skiing together.

I can tell you that trying to sort two pieces of wood the same height as myself attached to me feet, while in any kind of controlled manner descending a steep hill covered in snow and ice is difficult enough without adding the complication that a declining balance, difficulty shifting the body left and right and a tendency for my body to not comply to motoric instructions, especially under stress, that my first experience with PD threw at me. I honestly believe that no-one has a higher falling-to-standing ratio in a ski slope than me. The good thing was that I quickly developed my skills in reassuming a standing position, even from the most awkward falls and of course the strange fact that I didn't break any bones in my body.
I was by my friends fondly nicknamed "the human bowling ball" and I can, even now over 25 years later, easily see the inner picture of myself going down a slope with the victims of my skiing-disabilities falling right and left.

This trip down memory lane was actually brought on by a trip to a bowling alley I did in January. It was the family's annual bowling tournament to celebrate our mother's birthday and this year her offspring treated her to a few days skiing together with all of us. At  the time, the skiing adventure seemed reassuringly distant, but as time went by, the distance diminished to the point that departure is tomorrow. So I would like to issue a warning to all those planning a peaceful day in the slopes of Dalarna these coming few days: beware of human bowling balls....

Actually, the truth is that medications and training at the gym has provided me with both the balance, muscle strength and control enough to enable me to descend a ski slope in a more greceful manner and my falling-standing ratio these days might even be below 1. So I am looking forward to a few days of family quality time with my own small family with extensions summing up to 7 adults and 5 children ages ranging from 2 months to 8 years. Mind you, I didn't say quiet family quality time....

What is it with PD and 1971?????????

What on earth happened in 1971 that made PD run wild???

I started thinking when seeing Bryn's pic of him in his much becoming Tigger-suit (alledgedly a birthday present, but we don't believe that, do we....?), taking it easy after his ordeal of entering into the "naughty forties" (I do hope that is not an unappropriate expression in English... if so, I am going after the Brit who wished me welcome into them a few weeks ago... you know who you are...). 

The thought I had was not at all related to Winnie the Pooh or even me realising that I will never see the stories of Christopher Robin and friends in the same way again, but more to do with PD.

In my mind I went through my PD-network of friends and a surprisingly large number of them are in their early 40's or slightly younger... I had the good fortune of celebrating my entrance into the lovely age of 40 together with a whole bunch of my wonderful friends a few weeks ago and I know that several others of the PD friends I know from the World Parkinson's Congress in Glasgow last September-October and from other places will join me and Bryn soon.

I had a talk on the subject with Alex (Flynn) and we were wondering whether the world went crazy in the early 70s? Maybe this is a premonition of something? Does anyone know of any large demographic studies that would be relevant?

The joy of serendipity

Have you heard the story of the Three Princes of Serendip? Serendip is Persian name for Sri Lanka and the story is alledgedly based on the life of the Persian King Bahram V, who ruled the Sassanid Empire (420-440), according to Wikipedia, our time's equivalent to the Oracle of Delphi.

Anyway, the princes of the story are brothers and sons of King Giaffer of Serendip. The King wants his sons to be adequately educated to be fit to follow in his tracks and gets them the best tutors available. To make absolutely sure that they have what it takes, he sends them away from Serendip to prove themselves worthy of the throne. On their adventures through different countries they observe signs, analyse them and draw conclusions leading them so much further than they could ever have dreamt and in completely unexpected directions. Hence the meaning of the word serendipity.

It strikes me as an interesting analogue to clinical research in general and of course there are numerous examples of serendipitous discoveries leading to ground-breaking progress in research.

I have personally experienced  a lot of serendipity in my life the last few years, so much in fact that I just the other day decided to make myself a necklace in tribute to my new favorite word.

To me this necklace symbolizes all the new very dear friends I have found all over the world the last two or so years, it symbolizes the creativity and enthusiasm released when people are working for a common cause, it symbolizes the strength of the human mind and the amazing things that can happen if you open up your life to the fantastic power of serendipity.

Christmas in Sweden

Today is the 24th of December and in Sweden this is the day we celebrate Christmas. I know, I know... we are not normal... but this way it's over and done with before we suffer too much. Don't get me wrong, I like Christmas.... no, that's not entirely true, I have mixed emotions about it. However, it would take a very coldhearted person not to be affected by the enthusiasm a 7 year old can show for everything christmasy.

On Monday evening, we were at our daughter's school for the Swedish version of a Natitvity play. The stage was filled with nervously giggling 6, 7, 8 and 9 year-olds, some of wich were clinging on to cuddly animals sizes ranging from natural-rabbit-size to big-enough-for-the-child-to-hide-completely-behind. These animals were later to act as props for the nativity part of the event, filling the stable in Bethlehem with large bears, dogs, Pingu the penguin, an elk (after all, the play was set in Sweden), a dinosaur and Donald Duck. Before the birth of Jesus could start, Frida's class performed a dance from ancient times. They had done the choreography themselves and they showed us hunters and gatherers, how they hunted with spears, how they made a fire and what happened when someone would eat poisonous berries. We were very proud of the way our darling daughter died on stage and was buried by her tribesmen together with cermonical gifts. Do we have an actress in the family?

On Christmas Eve, all of Sweden grinds to a halt at exactly 3 pm, as everybody gathers in front of the altar of these times: the TV. On every 24th of December since 1960 Swedish television have shown "The Wonderful World of Disney - From all of us to all of you" and I have seen it every christmas since I was born. The children of today don't really see the point of watching it, saying "can't we save it to the DV-R and watch it later...?" They have no sense for traditions...

At 4 o'clock, the kids are almost besides themselves for want of opening the presents, which have been on display all day under the Christmas tree, but noooooo..... Now it's time for the traditional Swedish Christmas smörgåsbord..... The different courses on the christmas table can vary  between families, but in my family we usually have: pickled herring, meatballs, small sausages (called prince's sausages, I have no idea why...), potatos, beetroot's sallad, boiled ham, Swedish knäckebröd, omelette, bread and cheese and of course.... beer and schnapps. After a few hours of eating and drinking we are not hungry anylonger and someone says "now I have to go out and buy a newspaper".... After a while, there is a knock on the door and the children goes to open and let Santa in. The adults offers Santa some Glögg (Swedish mulled wine) and Santa hardly ever rejects the offer, although he probably already have had enough beer and schnapps to get him into trouble should his sled be pulled over by the reindeer police. The children wait VERY impatiently but they know better than to trouble an unknown bearded old man with strange clothes and a bundle on his back while he's drinking. FINALLY the presents are  being handed out and one of the children will assist Santa, since he needs to be sitting down because of his fragile state. When all presents have reached their final destination, Santa leaves and the ritual thrashing of paper and string begins with the energy only very enthusiastic children can acheive. About 3 minutes and 17 seconds later, with 78 presents opened and their content diffused over the room, the children say in unison: "was that allllllll there was??????".

And this is the cue for my mother. She will now bring out the presents given to her from behind the sofa... and open them slowly and with the full attention of everybody in the room.

A very Happy Christmas to all of you from a very cold and snowy Stockholm!

Me and PD revisited

When I was first given my Parkinson’s diagnosis, my world shattered… Our daughter was 9 months old and trying to learn how to walk. Was I to stop walking when she started? How much longer would I be able to work? How long before I was going to be completely dependant on others? Would my then partner (now husband) leave me (apparently he didn’t)? The questions were many, the answers were few…
This is of course a very natural response to such a life-changing realization. I had been diagnosed with a chronic, incurable, degenerative, neurological disorder. None of these words is even remotely positive. So, how come I am stupid or ignorant enough to call myself an optimistic realist today, more than seven years later?
You might imagine that the more I read about the vast number of symptoms that PD can bring and the more people disabled by our common lodger, the more terrified I would be… You would be wrong. For me knowledge is empowering (I am quoting a PD buddy of mine, thank you Chris!) and the more I learn, the more power I have in the fight.
There are different paths to choose when walking with PD (or if you are dyskinesic: dancing with PD). For me the path is involvement. I take pride in being a difficult patient, asking a lot of questions and expecting answers. I have also made the choice of going back to university, currently studying health informatics at a medical university. I hope to take my involvement even further and do what I can to help myself and others living with chronic diseases in general and, of course, PD in particular. Fingers crossed that I will be able to contribute.