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….

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.

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.

HP goes PD?

As someone who has loved the stories about the underdog wizard from the first time I heard of him, I am of course absolutely thrilled that the film “Harry Potter and the deathly hallows” recently premiered. Although I must confess that I haven’t seen all the films, I have however read all the books, more than once… (I belong to the strange sort of people who find joy in re-reading favorite books and the books I own that I have read the most times are the complete series about the hard working country vet in Yorkshire in the 1930s and 40s, James Herriot.).
However, the new film reminded me of my “Harry Potter-analogue”. Do you remember what Dementors are? If you ever saw one, albeit on film, the mere word probably makes your skin prickle… For those of you who doesn’t know or forgot, here is a short summary:
Dementors are the guardians of the wizard prison Azkaban and they are soulless creatures who will dement people encountering them for too long, hence the name. They are about 10 feet in height, humanly shaped, but wearing a dark hooded cloak only revealing their grey, decaying hands and faces with no eyes and a large hole where the mouth should be. Dementors feed on the happy memories and good emotions of human beings and the worst thing that can happen to someone is said to be the “Dementor’s kiss”, which is when a Dementor sucks the soul out of a person through his or her mouth.
These horrifying creatures, being blind, seek their prey by sensing emotions and when you are approached by a Dementor, you will freeze to the ground, unable to move. And should you suffer the kiss of a Dementor, you will be left an hollow shell, unable to feel joy ever again…… It is said that living after the kiss of a Dementor is worse than being dead……. Feels familiar…?
Luckily, there is a way to fight and beat the Dementors! By using magic, of course! Namely to summon a Patronus by using the Patrouns Charm. The charm is a combination of bringing back a very happy and powerful memory, pointing your wand in the direction of the creature and speak the incantation “Expecto Patronum”. Performed correctly, this will eject a silver light from your wand that will transform into your personally shaped Patronus or animal form protector, like a totem. Every wizard has their own Patronus reflecting the personality traits of the wizard summoning it. Naturally, since Patronuses are the corredponding physical form to very happy memories, what could be better to scare off Dementors. Wizards can help others being attacked by summoning their Patronuses to attack the hideous creatures.
Sometimes I humour myself by trying to establish different persons Patronuses… For some people it is very easy and for others it takes me a while. For exemple, if you ask me the obvious Patronus for Bryn, keeping this site the “Dementor-free zone” that it is, would be an irish wolfhound: (quoting Wikipedia)
“Of great size and commanding appearance, the Irish Wolfhound is remarkable in combining power and swiftness with keen sight. … An easygoing animal, they are usually quiet by nature. Wolfhounds often create a strong bond with their family and can become quite destructive or morose if left for long periods. The Irish wolfhound is relatively easy to train. They respond well to firm, but gentle, consistent leadership.”
Well… no, maybe not… I will have to try again…
“The dromedary or Arabian camel is a large even-toed ungulate with one hump on its back. … Male dromedaries have a soft palate, which they inflate to produce a deep pink sack, which is often mistaken for a tongue, called a doula in Arabic, hanging out of the sides of their mouth to attract females during the mating season. … Dromedaries are also noted for their thick eyelashes and small, hairy ears. Dromedaries are used as a beast of burden in most of its domesticated range. Unlike horses, they kneel for the loading of passengers and cargo. Dromedaries have a reputation for being bad-tempered and obstinate creatures that spit and kick. A camel will show displeasure by stamping its feet and running.”
There, that’s better!

As for my own Patronus, many have tried, but the general opinion is that so far none of the proposed animals have seemed to stick. Suggestions have ranged from lioness over ferret, blue tit, squirrel, rat, moongoose to meerkat (Timon from “The Lion king”, noooo… not the warthog…).
Suggestions are welcome.

Glasgow, city of hope and determination (WPC2010)

 By first glance, Glasgow might seem like just another city anywhere in the world, with its downtown glass-clad buildings and shopping area.

By the way, how come the Swedish clothes brand that used to be considered really low quality and that no-one in my first grade class would be caught dead in is all over the world these days? And speaking of low quality, would you believe that IKEA had the exact same reputation around that time (1978-ish)? It is two amazing success stories and I wear H&M as well as have a lot of IKEA furniture at home these days without blushing with shame. If PD was only a fraction as well known as H&M and IKEA, awareness wouldn’t really be an issue, would it…?

Anyway, back to Glasgow: Monday was spent exploring the city, Annika, Lars and me going in and out of shops. It seems a common trait for men all around the world that they by far prefer the Apple store to H&M. As for myself, I don’t discriminate like that, and late afternoon, I returned to my hotel, the very satisfied owner of an iPad. And then they say you can’t buy happiness…

Tuesday was the beginning of congress with the pre-congress courses on three different levels, where we learned “the fundamentals of PD”. The evening came and so did a very impressive opening ceremony. As far as I’m concerned, as long as there’s pipes and drums, I will like it. There are few things as pleasant to the eye as men in kilts…
After that the congress really took off and I realised that time does go faster when you are enjoying yourself.

The week in Glasgow was an overwhelming experience with a lot of emotional moments. I didn’t attend as many sessions as I thought I would, for reasons like prioritising having coffee with a new-found friend, catching up on some sleep or simply hanging out in The Cure Parkinson’s Trust’s stand. However, I don’t regret missing sessions, because what will really stay in my mind is meeting the fantastic people there, PWP, researchers and others. It was amazing to experience the hope, dedication and determination of the whole PD community.

I will never forget:

•    Bryn’s speech at the opening ceremony. If you haven’t read it yet, check it out on Bryn’s blog. “The fierce urgency of now…”, I still get goose bumps…

•    The scientific session where Roger Barker was talking about stem cells and other future treatments. I think that maybe a few researchers were disappointed with the level of it, but I think the PWP attending was very thankful for the crash course in future therapies. He really chose the exact right level!

•    The Brain Game quiz on Friday, arranged by The Cure Parkinson’s Trust. As a Swede, I had never heard of Tony Hawks hitching round Ireland with a fridge, but he did a very good job hosting it all the same. And I’m sorry Tony, but to me the bigger celebrity in the room was Dr Stanley Fahn, the man who diagnosed Muhammed Ali with PD.

For me, Glasgow will forever be the city of hope and determination and I’m already looking forward to the next WPC: October 2013 in Montreal, Canada.

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.