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.

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.

Optimistic realist with Parkinson’s

Parkinson’s is an incurable chronic neurodegenerative disease. None of these words is even remotely hopeful or positive. The good news is it won’t kill you, but then again, not even Michael Jackson turned out to be able to live forever, so I guess the odds are against all of us on that point as well.

Considering this, people often comment on my being so happy and positive most of the time. You might think it comes from ignorance of the disease and what my future might be. Or maybe you’d think I’m applying the ostrich-method of sticking my head in the sand and refuse to see the truth of my situation.

Well, those of you who already know me can tell those of you who don’t, that neither of those are ”the Sara way”.  In fact, the more I read and learn about PD, the more positive and hopeful I become.  I like to call myself an optimistic realist (or realistic optimist depending on my mood for the day).

The optimism comes from my conviction that the research done on our behalf is really making progress and that new treatments will come and eventually (probably within the foreseeable future)  the long awaited CURE.

The realism comes from the realisation that it’s up to me and me alone to make sure I keep fit enough and positive enough to be prepared and in shape for the treatments to come.

Consequently, I would like to modify my first sentence into:

Parkinson’s is a presently incurable chronic neurodegenerative, but manageable, disorder that is best handled with generous amounts of humour and what we in Sweden call ”jävlaranamma” and in Finland would be called ”sisu”. (translates into something like ”stubborn as the devil”).