Posts in grid

Blog posts in a grid, most recent post first.

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

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

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

“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

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

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

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

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

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


  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


  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

“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

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

“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

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

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

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

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

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

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

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 (, a 3-day event with literally thousands of

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

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

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,

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