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 is also difficult to bring to work.
So, I have decided to add some new tests: I found two apps on the app store that looks promising: FastFingers (a tapping test where you’re supposed to tap as many times as possible for 30 seconds) and ReactionTest (measuring your reaction time). I have taken the test series (FastFingers once for each hand and ReactionTime 5 times for each hand), making sure to attempt to performing the tests in the same way every time. I took the test late last night when I was running low on medication, once early this morning when I had just taken my first dose and once 30 minutes later. I have also registered a control: my darling husband. The results look interesting and can be found on the tab “Reaction and tapping” here. I will take the test once more now and then several times during the day. Watch this space!
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 Age and Centre of Gravity (COG) before and after the exercises I perform. The difference today was surprisingly large, check the table here. I would guess that the balance game I played today (Table Tilt), gave me the external feedback I needed to “recalibrate” my balance.
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 Board in the morning can affect the impact PD (Parkinson’s Disease) has on my life. I will attempt to jump onto the balance board every morning and perform a body test and preferably a few exercises as well. I will register my Wii Fit Age, BMI and scores in the exercises here and hopefully some sort of effect will be apparent, we shall see.
Let Sara’s PD-Wii Fit Plus Challenge begin!
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 forward to a bit more breathing space. Having said that though, next week’s calendar looks as full as ever, but to quote a very dear friend: “all good stuff!”. I am very proud and honored to be mentioned in two articles during the last week: The Economist and the Swedish “glossy mommy magazine” mama.
The Economist had an article on the fantastic Quantified Self un-conference I attended in Amsterdam last November and I was mentioned in a very short paragraph (link to article). Don’t blink or you’ll miss it! My slides from the presentation mentioned can be found here.
The article in mama was an interview, not available on-line, but looks like this:
Min dag gick i föredragens tecken, eftermiddagen tillbringade jag på Filmstaden Sergel där Dagens Medicin bjudit in Mälardalens ST-läkare samt mig att prata på temat “Patient-läkarrelationen, så gör jag läkaren delaktig”. Jag uppskattar verkligen inbjudan samt att de skruvade frågeställningen ett halvt varv extra 🙂
Jag hade idag nöjet att prata på Svensk Reumatologisk Förenings Registerdag 2012 tillsammans med Carina Andrén under titeln: “Samskapande av hälsa med patienter och vårdproffs”. En mycket trevlig och tacksam publik med ett stort kunnande inom kvalitetsregister. En pdf av min presentation finns här:
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 common goals.
We met on Twitter, in fact, Twitter suggested me to follow him and his profile definitely caught my eye.
I sent him the first email one year ago today, I have kept it. He responded a few hours later and that was the beginning of our story. We were living in different countries then, me in Sweden and him in Holland. Last summer he moved to Sweden.
He is a doctor, a few… well, if you have to know, he is 8 years younger than me. But age doesn’t matter, does it?
We live 300 km apart, but thanks to social media we have a lot of contact.
My life has been enriched since I met him.
My life, as well as my daugther’s and my husband’s. Because Paul and his family have become very good friends to us. Paul and I are working together on different projects.
A patient and a doctor collaborating. On equal terms. Isn’t that what Health 2.0 is all about?
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 visitors: doctors, nurses, etc. I was invited to speak on the topic of patient participation and specifically “What happens when a patient turns researcher on their own disease?”. I told my story, my theory of a translational process: from patient back to person (I will desribe it in more detail in a blog soon) and how I will start my PhD early next year.
Since I am a firm believer in learning as the purpose in life, In my mind, I am only doing the logical thing when I want to learn as much as I possibly can about one of the things that affects me most. I am stuck with this disease so I might just as well make myself useful and hope that what I do can help others.
I want to show the way
from researching patients to patients’ researchers!