Blog posts in a grid, most recent post first.
I can’t take yet another solution looking for a problem…
Aug 17, 2022
3 Min read
I have long since stopped counting the number of tech companies that have contacted me over the years to get me to help with what
My 5 top learnings from tracking my Parkinson for over a decade
Aug 11, 2022
10 Min read
I have more than a decade of experience from tracking my Parkinson’s disease (PD) and I want to share my 5 most important learnings. Hopefully
On this day 10 years ago…
Mar 28, 2022
1 Min read
On this day 10 years ago, March 28th 2012, I was registered as a PhD student at Karolinska Institutet. My research plan, which was going
Personal science day 25 March 2022
Feb 11, 2022
1 Min read
PhD thesis defence I will defend my thesis on Friday 25 March 2022 at 10:30 am CET at the aula of the Radboud University, Nijmegen.
My PhD thesis is now available!
Jan 21, 2022
1 Min read
A few weeks into the new year and I am happy to announce that my PhD thesis is now available! Below you can find links
PhD thesis print proof
Dec 21, 2021
0 Min read
Checking the print proof of my PhD thesis makes me very happy! Huge thanks to supervisors supreme Bas Bloem, Maria Hägglund, Martijn de Groot! I
Draft version of the “spetspatient” framework
Dec 6, 2020
5 Min read
Authors: Sara Riggare, Therese Scott Duncan, Maria Hägglund. Introduction In the Merriam-Webster dictionary, ‘advocacy’ is defined as: “the act or process of supporting a cause
Tracking of COVID-19
Nov 23, 2020
3 Min read
Edit on 16 December 2020: I am now almost back to “normal” (whatever normal is when living with a progressive illness…). Looking forward to relaxing
PhD trajectory update
Jul 14, 2020
1 Min read
I figured that an update on my PhD trajectory was in order so here goes:
“But Sara…”
Jul 23, 2019
7 Min read
“But Sara, why would patients want to do research on themselves anyway? Isn’t it better if you all just give your data to a proper
Some key aspects of patient-centered research
Jul 19, 2019
3 Min read
It is a truth universally acknowledged that many patients no longer settle for contributing to medical research only as participants in research studies. Over the
What is a ‘spetspatient’?
Jun 9, 2019
4 Min read
My non-Swedish speaking friends may have been wondering what I have been up to lately. And it’s a fair question, since I haven’t been blogging
Årets medicinsvensk 2018 / Swede of the year in medicine 2018
Feb 10, 2019
0 Min read
Jag utsågs av nyhetsmagasinet Fokus i januari 2019 till årets medicinsvensk 2018 med följande motivering: Att vara patient kan vara detsamma som att känna sig
Walking revolutionised
Jan 15, 2019
5 Min read
Tuesday last week, I got myself a new friend. I have namned him Potemkin and you can see him in the photo here, being examined
Ethics and PhD
Sep 16, 2018
10 Min read
Background A few days ago I had some disappointing news. I have been working on my PhD in the area of digital selfcare and self-tracking
A small round white pill
Aug 9, 2017
3 Min read
Every morning I have my phone alarm set to ring at 6 am. Every morning, weekday or weekend, workday or holiday, because at 6 am
The finest compliment I ever had
Jun 1, 2017
2 Min read
Today I learnt that Tom Isaacs, President and co-founder of the Cure Parkinson’s Trust died very suddenly and unexpectedly yesterday morning. Tom is (yes, he
What is in a fall?
Aug 29, 2016
2 Min read
Before my Parkinson’s had evolved into the kind with “freezing-of-gait”, or FOG for short, that now is far more familiar than I would like, I
From The White House to the red house
Jun 9, 2016
4 Min read
Last week was a week of contrasts for me. On Tuesday I left Stockholm for New York City and the purpose of my trip was
Neuroscience – theory and practice
Mar 21, 2016
5 Min read
I’m sure most of you have seen me write once or twice before that PD is a very complex disease, but it bears repeating: PD
45 and counting
Feb 21, 2016
3 Min read
It was my birthday last Friday, on the 19th of February. This year I turned 45 and was honoured, grateful and very happy for all
For whose sake is research done – really?
Jan 1, 2016
1 Min read
I owe a lot to research. Thanks to an immense number of dedicated researchers, I have access to reasonably effective treatments for my Parkinson with
BEAT Parkinson – in English
Dec 27, 2015
0 Min read
On a weekend in November 2015, Stockholm was the scene for the start of a novel (for Sweden) concept for training for Parkinson’s: boxing training! The
Organising your own “health management system”
Dec 27, 2015
2 Min read
During the last few years, I have been thinking a lot about healthcare, which could be seen as strange, since I actually don’t use a
The Burden of Tracking
Oct 18, 2015
3 Min read
I have called myself a self-tracker since the first time I heard the word. The concept of using technology to collect data about myself and
Perspectives?
Oct 13, 2015
2 Min read
Most people would probably agree that being diagnosed with Parkinson’s disease (PD) at age 32 would be a hard blow. It was. I usually describe it
Going from researching patients to patients researchers
Jun 26, 2015
1 Min read
In September I will be attending one of my favourite conferences for the third time: Stanford Medicine X! It is the most patient-inclusive conference I
Lena increased her daily “feel-well-time” from three to ten hours
Jun 24, 2015
0 Min read
For the last year or so I’ve been working in a project funded by the Swedish government’s national strategy to treat and prevent chronic diseases.
Tomorrow, 2nd June 2015, is my #Parkinsons1day!
Jun 1, 2015
0 Min read
Tomorrow on 2nd of June, I will be sharing my experiences with Parkinson’s with Gilles Frydman of Smart Patients and on Twitter so you can
#Parkinsons1day
May 31, 2015
0 Min read
#Parkinsons1day is a project initiated by Roni Zeiger and Gilles Frydman of Smart Patients, an online community where patients and caregivers learn from each other about
Parkinson’s never takes a day off
Apr 5, 2015
2 Min read
Parkinson’s is a neurodegenerative disease, meaning that it gets worse as time goes by and there is no cure. If you think about it, life
“Liberté, égalité, santé!”
Dec 12, 2014
1 Min read
Life in 18th century France was probably far from easy, although less difficult for some. The aristocracy were living relatively comfortable lives, where the very
Changing the image of Parkinson’s disease – one blog at a time
Nov 15, 2014
0 Min read
The general image of Parkinson’s disease is probably an old man with hands that are shaking, walking slowly and shuffling. In fact, that was my
At Quantified Self, I forget I have Parkinson’s
Nov 1, 2014
1 Min read
If I could only attend one conference a year, I know exactly which one I would choose: Quantified Self Europe. I have a very special
Healthcare or health?
Oct 25, 2014
3 Min read
A google search for “What is health?” just resulted in approximately 23 200 000 hits and I think that the number of different answers to
PD Bootcamp video
Sep 2, 2014
0 Min read
My week at the neurorehabilitation centre CNS in Portugal was fantastic and I can’t thank the physiotherapist Josefa and her colleagues enough for sharing their skills
Victory is mine!
Aug 24, 2014
2 Min read
On our 6th day at the centre for neurorehabilitation in Portugal, CNS, it was time for evaluation and reflection. How much can you actually achieve
How to make it stick?
Aug 23, 2014
1 Min read
These last five days at the centre for neurorehabilitation CNS in Portugal have been eye-opening and extremely hard work, I have learnt so much and
“Run Parkie, run!”
Aug 22, 2014
2 Min read
The “internal feedback system” of people with Parkinson’s does not function properly. I have no idea what the neuroscientific explanation is but I think that
Motivation to fight Parkinson’s
Aug 21, 2014
1 Min read
I have been trying to think of an appropriate symbol for Parkinson’s and finally I have found what I think is the perfect representation: a
The Fight Parkinson’s Club
Aug 21, 2014
2 Min read
On our way from the airport in Lisbon to the rehabilitation centre Campus Neurológico Sénior (or CNS for short, pun intended, I’m sure) in Torres
Fighting to stay well
Aug 16, 2014
2 Min read
Parkinson’s is hard work. A friend of mine, on his way to becoming a neurologist, says to his patients: “Having Parkinson’s is a full time
Chronic disease and self-tracking – part 1: heart rate
Jul 30, 2014
2 Min read
Having a chronic disease is lifelong learning, even if you don’t want to. Living with a progressive disease is a challenge on the best of
We need a “Copernican Revolution” in healthcare!
May 29, 2014
3 Min read
I share my birthday with someone very famous, I would say that almost everybody in the world know his name. At least we all know
“Patients included” for REAL!!!
May 25, 2014
0 Min read
This is a fantastic campaign on Medstartr by “The Joan of Arc of e-patients” Casey Quinlan! Casey and the rest of the gang at Patients for
My take on patient participation
Jan 18, 2014
2 Min read
In september 2013 I wrote a blog in Swedish fuelled by my frustration over the current situation regarding patient participation. I gave it the title
Goal setting in the time of neurodegeneration
Dec 30, 2013
3 Min read
The end of another year is approaching – always a good time for reflections, evaluations and decisions… or…? I have never made any New Year’s
Travels with Parky
Nov 23, 2013
5 Min read
This is an article I wrote for “On The Move”, the magazine of Parkinson’s Movement on my experiences when travelling to the World Parkinson Congress
Bruised knees and bruised ego…
Oct 25, 2013
3 Min read
I have a new friend. She can be seen on the photo here and I picked her up in a shop the other day. A
What is the currency in health?
Jun 26, 2013
2 Min read
The question of value is an intriguing one. What do we value? Are people judged based on their abilities: the man who were strongest were
Patient engagement?????
May 22, 2013
1 Min read
One of my favorite films of all times is called “The Princess Bride”, a sort of “Errol-Flynn-goes-Monty-Python” experience and if you haven’t seen it, I
Tokenism or talent?
Mar 2, 2013
1 Min read
Being an engaged and knowledgeable patient has a lot of benefits. On a personal level, knowing as much as I possibly can about my condition,
Quantifying freezing-of-gait
Jan 31, 2013
0 Min read
These are my feet, they have been with me for 42 years soon and they mostly serve me well. However, recently I have noticed an
Health IT and security issues
Dec 16, 2012
1 Min read
For someone who has actually studied health informatics, I don’t blog as much about health IT as I probably should… Well, it’s never too late
Perception part 2
Nov 19, 2012
3 Min read
Perception is a strange thing. After my diagnosis of generalized dystonia on the 6th of November 1989, I tried as best I could to not be
Perception part 1
Nov 18, 2012
1 Min read
When a person is diagnosed with a serious disease, something happens. Maybe not instantly, but most often the words “You have X”, where “X” can
Healthcare vs Selfcare
Oct 20, 2012
1 Min read
I am a doctoral student at a medical university, but I am also a patient. What does the concept “patient” really mean? When is a person
Free on-line consultation with a Parkinson’s specialist
Oct 14, 2012
0 Min read
A few weeks ago, I was introduced to Ray Dorsey (photo) via an email. Ray is an MD and associate Professor of Neurology and the
My mission is NOT to improve healthcare…
Sep 21, 2012
0 Min read
My mission is not to improve healthcare… no, it’s not a typo… keep reading… And now that I have your attention, I will start over:
Balancing or not?
Sep 19, 2012
2 Min read
I find it very difficult to find the right balance. The problem is of course, that balance is key. If we didn’t have balance, what
Always a patient?
Jul 2, 2012
1 Min read
The first week of July every year is a very special week on the magical island of Gotland, off the east coast of Sweden. This
Learning through observations
Jun 10, 2012
1 Min read
When I was diagnosed with Parkinson’s at the age of 32, I was of course devastated. I had a nine-months-old baby at home and they
What is the outcome of healthcare?
Jun 3, 2012
1 Min read
As a person living with a chronic disease, I am very grateful to healthcare. I would not be able to live my life like I
Health is about responsibility
May 12, 2012
3 Min read
Health is about responsibility. I am not sure of the situation in other countries, but in Sweden I get the feeling that people in general
Method description
May 7, 2012
1 Min read
To evaluate the effects of my medications, I use an app on my iPhone. I don’t have the tremor that most people (including myself) associate
Very preliminary analysis after two days on new dose
May 7, 2012
1 Min read
Thank you Zalamanda and Marten, for your comments on my previous post. Of course, I agree with both of you, two days is far too short a time
Results after two days on my new dose
May 6, 2012
0 Min read
I have compiled the measurements during these last two days, see below. Compared with my base line measurements, they look very random and I will
New dose day 2
May 6, 2012
1 Min read
The first day on the tweaked dose went OK, no fantastic change, but I didn’t expect that either. Let me try explaining in some more
New dose day 1
May 5, 2012
1 Min read
These last few days have made me even more aware of how extremely dependent I am of my medications, and if you’re reading this and
I need a change, I really need a change
May 4, 2012
1 Min read
I have found myself really struggling for quite some time now. Struggling to move smoothly, struggling to stay positive, struggling to keep going. And I
“Is Parkinson’s Contagious?”
Apr 22, 2012
2 Min read
Another recycled blog post, this one was originally written in May 2010. The apple of my eye is a 4 ft tall, 45 lbs creature
On a Tightrope – Life is a Balance!
Apr 21, 2012
2 Min read
This is the very first blog post I wrote in English, first published in April-May 2010. When I was 13 or 14 years old I
PD Quantified Challenge – end of day 3
Mar 12, 2012
0 Min read
Results from my first day of evaluating myself can be found in the graph below and the next one shows my control (a.k.a. hubby). I
The PD challenge, day 3 – add an app or two
Mar 12, 2012
0 Min read
Hmmm… I have realized that the Wii balance exercise/monitoring doesn’t give me quite the information I need relating to fine movements and the Nintendo Wii
PD-Wii Fit Plus Challenge – day 2
Mar 11, 2012
0 Min read
Day 2 of my challenge and I realized that the registering of the results has to be altered slightly: I will register the Wii Fit
My PD-Wii Fit Plus Challenge
Mar 10, 2012
0 Min read
Today I am starting a new project: My PD-Wii Fit Plus Challenge. The idea is to investigate if a few minutes on the Wii Balance
Long time, no posting…
Mar 9, 2012
0 Min read
It’s been a number of very busy weeks… to say the least… I now feel like I am through the most hectic parts and look
Anniversary by Social Media and Health 2.0
Dec 4, 2011
0 Min read
One year ago today I met a man. We have so much in common, we share the same values, we have similar dreams, we have
When a patient turns researcher
Dec 4, 2011
0 Min read
Thursday last I was invited to speak at the yearly conference for the association of Swedish physicians (http://www.sls.se/), a 3-day event with literally thousands of
Sharing is contagious caring, second day at QS2011 Amsterdam
Nov 27, 2011
0 Min read
Getting close to the end of the second and last day of QS2011 Amsterdam and it has been truly inspirational, extremely intense and a fantastic
First day of QS Europe 2011 in Amsterdam
Nov 26, 2011
0 Min read
My first ever day at an unconference and the impressions have been numerous. I love the idea of having the focus of the meeting on
Health 2.0 – “The patient joins the team”
Oct 15, 2011
1 Min read
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 your face PD!
Sep 26, 2011
1 Min read
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
Swedish midsummer
Jul 15, 2011
2 Min read
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
Being brave
May 17, 2011
1 Min read
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
The first diagnosis
Apr 24, 2011
1 Min read
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
The first meeting
Apr 12, 2011
1 Min read
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
Downhill skiing
Mar 30, 2011
2 Min read
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
The joy of serendipity
Jan 29, 2011
1 Min read
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
Christmas in Sweden
Dec 24, 2010
3 Min read
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
Me and PD revisited
Dec 15, 2010
1 Min read
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
HP goes PD?
Oct 15, 2010
3 Min read
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
Glasgow, city of hope and determination (WPC2010)
Oct 15, 2010
2 Min read
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,
Travelling to WPC 2010
Oct 15, 2010
2 Min read
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
Meeting others with PD
Jul 15, 2010
2 Min read
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
New symptom or not?
Jun 15, 2010
3 Min read
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
“Is Parkinson’s contagious?”
Feb 15, 2010
2 Min read
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
Optimistic realist with Parkinson’s
Feb 15, 2010
1 Min read
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,
On a tightrope – Life is a balance!
Feb 15, 2010
2 Min read
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