We all know that excercise is good for us. We do. And those of us with PD know that for us excercise is more than good, it is essential. Yes, I know, we know it, but we don't always act upon it.
I spent my first 30 odd years actively avoiding every kind of physical excercise, and quite successfully so. In hindsight I can see several reasons, the most important being the severe resistance my PD symptoms gave me. I mastered avoiding PE classes in school and never sat foot in a gym. But one day found me better medicated and more motivated and a very unfamiliar feeling filled me... I actually enjoyed excercise... I was shocked!
Let's face it, the proof is overwhelming, EXCERCISE IS GOOD FOR US... There are numerous scientific articles to that effect, the most recent probably being: http://www.ncbi.nlm.nih.gov/pubmed/21750523. And excercise doesn't have to be going to a crowded gym or running endless miles on a dusty road. For me, the most rewarding training is putting my sometimes failing body to good use around our country house, doing gardening or similar.
I had not given it much thought though, until the other day, when I found myself hacking away at a pitiful excuse for a lawn that we were trying to turn into a patio. The plan was to take away a few inches and then fill it up with gravel and top it off with a substantial number of reasonably flat large stones. Suddenly it dawned upon me that I was actually enjoying straining my body and found an unfamiliar pleasure in using tools designed centuries ago when gardening was more about surviving the winter than a pleasant pastime or enjoyable hobby.
A few days later, I realised why I had enjoyed blistering my hands and working myself to a sweat. It has to do with fear, with love and fear. Because I will admit I fear PD. I fear what may come. I fear the unknown. But I have a choice. I can either let the fear paralyse me or I can use my fear to drive me to working against what I fear. And I feel love doing things that works against the things I fear. So from a former excercise-phobic and with every aching muscle I get from working out, I say:
In your face PD!
Sunday, 24 July 2011
Friday, 15 July 2011
Swedish midsummer
Although Sweden's national day is on the 6th of June (and incidentally wasn't made a bank holiday until 2005...), the true national day of Sweden by any standards must be Midsummer's eve. On the Friday closest to Summer Solstice everyone in Sweden with their own summer cottage will celebrate the longest day of the year together with friends and family.
The summer cottage ("sommarstugan"), is the Swedish tribute to our rural heritage and our ancestors who painstakingly lived on what the fields could provide. The typical sommarstuga is a small house or cottage, almost always made of wood and mostly a log cabin and a lot of them originate from the early 20th century and was originally built to be the home of a large family farming the surrounding land. The traditional and most usual colour is a special kind of red paint called Falu red (http://en.wikipedia.org/wiki/Falu_red) and as you can see below, ours follow that prerequisite, althoug it is not more than 40 years old.
Sweden has around 10 million inhabitants and about 1 million summer cottages and most of these cottages are shared within a family. This means that probably more than 50% of Swedish families have access to a sommarstuga.
Come the Thursday before Midsummer every year, so does the big exodus from Stockholm and other cities out into where Sweden was built: the country side. Tradition has it that every year, around 15-20 people gather at our country house to follow the old pagan traditions in celebrating the fertility of the land in the absolutely least subtle way imaginable.... We take a 15 foot pole, put a crossbeam a few feet from the top where we hang two large rings and then put green leaves and flower all over to make it pretty. After that the pole is erected and stuck firmly into the ground, the end with the rings up...... Very subtle indeed....
The mandatory luncheon consists of boiled new potatoes, pickled herring ("sill") in every shape, form and flavour imaginable (and trust me, when it comes to sill, Swedes are not lacking in inspiration) and to drink: lager and Swedish Aquavit ("snaps" or "nubbe") in every shape, form and flavour imaginable (and trust me, when it comes to snaps, Swedes are surpassed by none in terms of innovatiove abilities). And snaps cannot be drunk without singing, which is why my own daughter already at a very young age, like myself, used to sing drinking songs to her babysitters.
After lunch the dancing around the pole commences. Nowadays, the dancers are practically only children and their more-or-less awkward-looking mothers or fathers, whereas in the olden days I am sure the maidens were slightly older and maybe slightly more daringly dressed. The dancing is often accompanied by an old couple singing and playing the harmonica, dressed in traditional clothing.
The ones still standing after such an ordeal participate in the evening barbecue, sauna with swimming in the lake and maybe some more singing until the sun sets... or, wait a minute... the sun hardly sets on Midsummer's eve... hmmmm.... that must be why Midsummer's Day always feels so difficult...
The summer cottage ("sommarstugan"), is the Swedish tribute to our rural heritage and our ancestors who painstakingly lived on what the fields could provide. The typical sommarstuga is a small house or cottage, almost always made of wood and mostly a log cabin and a lot of them originate from the early 20th century and was originally built to be the home of a large family farming the surrounding land. The traditional and most usual colour is a special kind of red paint called Falu red (http://en.wikipedia.org/wiki/Falu_red) and as you can see below, ours follow that prerequisite, althoug it is not more than 40 years old.
Come the Thursday before Midsummer every year, so does the big exodus from Stockholm and other cities out into where Sweden was built: the country side. Tradition has it that every year, around 15-20 people gather at our country house to follow the old pagan traditions in celebrating the fertility of the land in the absolutely least subtle way imaginable.... We take a 15 foot pole, put a crossbeam a few feet from the top where we hang two large rings and then put green leaves and flower all over to make it pretty. After that the pole is erected and stuck firmly into the ground, the end with the rings up...... Very subtle indeed....
The mandatory luncheon consists of boiled new potatoes, pickled herring ("sill") in every shape, form and flavour imaginable (and trust me, when it comes to sill, Swedes are not lacking in inspiration) and to drink: lager and Swedish Aquavit ("snaps" or "nubbe") in every shape, form and flavour imaginable (and trust me, when it comes to snaps, Swedes are surpassed by none in terms of innovatiove abilities). And snaps cannot be drunk without singing, which is why my own daughter already at a very young age, like myself, used to sing drinking songs to her babysitters.
After lunch the dancing around the pole commences. Nowadays, the dancers are practically only children and their more-or-less awkward-looking mothers or fathers, whereas in the olden days I am sure the maidens were slightly older and maybe slightly more daringly dressed. The dancing is often accompanied by an old couple singing and playing the harmonica, dressed in traditional clothing.
The ones still standing after such an ordeal participate in the evening barbecue, sauna with swimming in the lake and maybe some more singing until the sun sets... or, wait a minute... the sun hardly sets on Midsummer's eve... hmmmm.... that must be why Midsummer's Day always feels so difficult...
Saturday, 28 May 2011
Health 2.0 - "The patient joins the team"
Being a student of Health Informatics at the Karolinska Institute has introduced me to a number of interesting concepts. Already during our very first week in August of last year, we heard about "patient-centered healthcare", "shared decision-making" and "patients as co-creators of health" and to a highly opinionated and severly inquisitive patient such as myself it is quite simply music to my ears. It was simply a match made in heaven and me and my student colleague with MS (yes, what were the odds of TWO highly opinionated and severly inquisitive brain disease victims actually ending up in the same class....) had a wonderful time asking our teachers to elaborate on the patient perspective to the point where I would guess our more normal classmates of medical and computer backgrounds from all over the world probably wanted to smack us to make us keep quiet.
However, the true "Eureka-moment" came when I first heard about "Health 2.0", which in the words of Lucien Engelen means "the new relationship between health care provider and patient" (from A little booklet about Health 2.0, 2010). I would guess that the definitions of Health 2.0 are at least as many as the number of people working in the field, however to me personally it signifies Patient Empowerment in its true meaning, giving patients wanting to take more responsibility for their own health a means to do so by in the optimal way using the Internet and social media. To me Health 2.0 is about a more equal sharing of responsibilities within healthcare by acknowledging the patients expertise and experiences of their illnesses and collaborating to give all stakeholders a better outcome. To me this is the only way to meet the increasing burden of illness in the world and I am certain the "revolution" is just starting. See you on the barricades!
(References: http://en.wikipedia.org/wiki/Health_2.0, http://lucienengelen.posterous.com/21389951)
This video is to me an excellent example of what my dream of future healtcare looks like:
However, the true "Eureka-moment" came when I first heard about "Health 2.0", which in the words of Lucien Engelen means "the new relationship between health care provider and patient" (from A little booklet about Health 2.0, 2010). I would guess that the definitions of Health 2.0 are at least as many as the number of people working in the field, however to me personally it signifies Patient Empowerment in its true meaning, giving patients wanting to take more responsibility for their own health a means to do so by in the optimal way using the Internet and social media. To me Health 2.0 is about a more equal sharing of responsibilities within healthcare by acknowledging the patients expertise and experiences of their illnesses and collaborating to give all stakeholders a better outcome. To me this is the only way to meet the increasing burden of illness in the world and I am certain the "revolution" is just starting. See you on the barricades!
(References: http://en.wikipedia.org/wiki/Health_2.0, http://lucienengelen.posterous.com/21389951)
This video is to me an excellent example of what my dream of future healtcare looks like:
Tuesday, 17 May 2011
Being brave
Last year I did the the bravest thing I have done in my life. And to me being brave has very little to do with exposing yourself to all sorts of life-threatening activities such as parachuting or bungee-jumping or even riding a bicycle down a ski slope in Slovakia in the summer (one of my friends has actually done this...). Well, I guess these things are also brave in some sense, but most of the time they just seem unnecessary... at least to me, but then again maybe it just comes with the territory of having a movement disorder.
To me courage has to do with following your heart even though you don't know what will be. I read a quote from some old Greek last year and it goes something like this (if you think the translation is a bit dodgy that might be because it has been translated from Greek to Swedish and then to English): "Where you talent and your passion meet the needs of the world, there lies your calling". I have found my calling. I am just about to finish my second semester at Karolinska Institute in Stockholm studying Health Informatics (HI). HI is simplified all use of information and communication technology within healthcare in the broad context and here lies my calling. I want to use HI to empower myself and fellow chronic disease patients by giving us tools for understanding our situation better, tools for more effective communication with our doctor and nurse and tools for education. Education of ourselves, education of healthcare professíonals, education of our near and dear as well as awareness for everybody.
In my point of view, this is the only way healthcare can meet the increasing number of chronically ill without having the cost spiralling totally out of control. The only way is to give patients the choice to contribute if they want to, to allow patients to take responsibility for their own health, for their own care.
I am not saying this will be easy, but that is not a reason for not trying... We will all have to be brave and then the sky will not even be the limit!
(by the way, if any of you would happen to know who was the originator for my (probably severely and brutally disconfigured) quote about callings, please just let me know, OK?)
To me courage has to do with following your heart even though you don't know what will be. I read a quote from some old Greek last year and it goes something like this (if you think the translation is a bit dodgy that might be because it has been translated from Greek to Swedish and then to English): "Where you talent and your passion meet the needs of the world, there lies your calling". I have found my calling. I am just about to finish my second semester at Karolinska Institute in Stockholm studying Health Informatics (HI). HI is simplified all use of information and communication technology within healthcare in the broad context and here lies my calling. I want to use HI to empower myself and fellow chronic disease patients by giving us tools for understanding our situation better, tools for more effective communication with our doctor and nurse and tools for education. Education of ourselves, education of healthcare professíonals, education of our near and dear as well as awareness for everybody.
In my point of view, this is the only way healthcare can meet the increasing number of chronically ill without having the cost spiralling totally out of control. The only way is to give patients the choice to contribute if they want to, to allow patients to take responsibility for their own health, for their own care.
I am not saying this will be easy, but that is not a reason for not trying... We will all have to be brave and then the sky will not even be the limit!
(by the way, if any of you would happen to know who was the originator for my (probably severely and brutally disconfigured) quote about callings, please just let me know, OK?)
Sunday, 24 April 2011
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.
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.
Tuesday, 12 April 2011
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.
Wednesday, 30 March 2011
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....
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....
Sunday, 13 March 2011
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?
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?
Saturday, 29 January 2011
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.
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.
Friday, 24 December 2010
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!
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!
Sunday, 19 December 2010
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
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.
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!
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. Suggestion are most welcome by email.
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”).
On a Tightrope - Life is a Balance!
When I was 13 or 14 years old I realised that my body wouldn’t always do what I asked of it. I’m not sure what I noticed first.
Was it that sometimes when I was riding my bicycle I had a very hard time keeping my balance?
Was it the way my right shoe was worn down under the toe in a strange way because I wasn’t able to lift it properly when I walked?
Was it that I could not keep the rhythm of the music with my foot?
Or was it when my mother asked me why I didn’t swing my arms when walking?
I really don’t know, but with time I discovered more and more things that I just couldn’t do.
Nowadays all teenagers seem to compete with each other about who can be the most different and get the most attention. Or maybe that’s just me getting old…
When I was a teenager, it was the 1980’s. By the way, how come that the clothes and hairstyles from the 80’s are absolutely ridiculous when the music from the same time still is the best ever made….?
All I ever wanted as a teenager was to be normal, like everybody else, not different…. (well, that’s not entirely true, I also wanted a dog, a boyfriend and a moped, not necessarily in that order…). But all the time I knew I wasn’t like everybody else. It was not an easy period in my life, but then again, can anyone show me a teenager who thinks the sun is always shining… (and two out of three is not bad…)
That was my first encounter with Parkinson’s Disease but neither me nor any of the doctors I saw knew that.
For different reasons I didn’t receive the diagnosis Parkinson’s until October 2003, some 18 years after my first symptoms.
It was a hard blow being diagnosed with Parkinson’s Disease at age 32, although probably less hard than it would have been at age 14 or 15. Our daughter, who was 10 months old at the time and was starting to learn how to walk probably has a lot to do with how I was able to go on with my life.
In September 2008 I went to Spain on an education and training course specializing in people with PD. Those ten days focusing on myself and strategies for handling PD made a big impact in my life. I returned to Sweden as Sara version 4S: Stronger, Smarter, Swifter and…. Sexier…
The biggest impact the trip had was giving me the opportunity to really overcome my difficulties and learn my uncooperative body a lesson. Thanks to generous amounts of pure and strong Viking stubbornness and the lucky presence of the right equipment I actually managed to walk a tightrope!
I know what you’re thinking now: “she’s clearly under the influence of something completely different pure and strong…” . For you non-believers (and the rest of you as well) I can only say: Check out the film clip at the Wobbly Williams YouTube page. It definitely ranks among the seven proudest seconds of my life. It’s not graceful and not very beautiful, but I get the job done!
I did learn a lot on that trip but the thing that most changed my outlook on life was that even though I can’t walk on water I now know that I CAN learn how to walk a tightrope!
And I’m not stopping there… follow me here if you want to know where I end up…
Subscribe to:
Posts (Atom)