BEAT Parkinson – på svenska
Under en helg i november 2015 var Stockholm platsen för ett nytt (för Sverige) och innovativt initiativ för träning för Parkinson. Narva boxningsklubb hade tillsammans med Parkinson Stockholm och mig bjudit in den portugisiska sjukgymnasten/fysioterapeuten Josefa Domingos för att erbjuda boxarna på Narva utbildning om Parkinsons sjukdom och dessutom prova-på träning för Parkinson Stockholms medlemmar. Det var en succé, som filmen nedan visar.
Nu letar vi efter sätt att kunna erbjuda regelbundna träningspass speciellt för personer med Parkinson, genom sponsring eller andra sätt. Om du har något förslag, kontakta mig via: contact@riggare.se.
BEAT Parkinson – in English
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 boxing club Narva had taken the initiative together with the Parkinson’s association of Stockholm and me to invite the Portuguese physical therapist Josefa Domingos to offer the boxers at Narva boxing club education in Parkinson’s disease and also offer trial sessions of boxing training to the members of Parkinson Stockholm. It was a huge success, see the film below.
We are now looking for ways to offer regular training sessions specialising in Parkinson through sponsorships or other means. If you have ideas or suggestions, please email me at contact@riggare.se.
Lena increased her daily “feel-well-time” from three to ten hours
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. We call the project “Dagens patient” (“Patient daily” in English) and you can read about it here. “Dagens patient” is based on my work around self-monitoring my Parkinson’s and we currently work with people with Parkinson’s and MS, exploring different aspects of self-monitoring together. One member of our Parkinson’s group has done some really interesting things and she talks about it in the video below. It is in Swedish but has English subtitles. Let me know what you think about it!
PD Bootcamp video
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 and encouragement. I also want to thank Jon for literally pushing me to accomplish more than I thought I could (see video below or link to video here at 1:25) and generally being a good sport.
SVT 21 augusti 2013 – Därför loggar allt fler hela sina liv
“De loggar allt i sina liv, från löparrundan till sina hjärnvågor. Möt rörelsen Quantified Self.”
http://www.svtplay.se/klipp/1408768/darfor-loggar-allt-fler-hela-sina-liv
Presentation at QSEU 2013
You can read about and watch the talk I gave at the conference Quantified Self Europe in Amsterdam in May 2013 by following this link:
http://quantifiedself.com/2013/06/caspar-addyman-and-sara-riggare-on-tracking-parkinsons/
Seminarium om patientmakt i Almedalen 4 juli 2012
Jag hade nöjet att få vara med och diskutera Patientmakt under ett seminarium med presentationer och paneldiskussion i Almedalen arrangerat av Vinnvård. Vinnvård är en forskningsstiftelse som stöder forskning som försöker besvara frågan “Hur kan vi leverera högkvalitativ vård och omsorg vid varje tillfälle, i alla situationer och på effektivaste sätt?”
Johan Assarsson presenterade det pågående arbetet med Patientmaktsutredningen, som han ansvarar för, se film här.
Martin Rejler presenterade sitt arbete och forskning kring att stärka patienternas inflytande genom att förändra ronden, se film här.
Jag fick möjlighet att presentera mina erfarenheter och tankar kring patientmakt, se film nedan.
Därefter följde paneldiskussion där även Vinnvårds programchef Staffan Arvidsson samt politikerna Helene Öberg (mp) och Stig Nyman (kd) deltog, se filmer nedan (diskussionen börjar ca 9:30 in i film nr 1 och fortsätter i film 2).
“From Ideas to Health” – presentation from KI on 30th of May
On the 30th of May, my main PhD supervisor, professor Staffan Lindblad and I gave a joint presentation at the 10 year anniversary conference of Medical Management Center at Karolinska Institutet, Stockholm, Sweden. The title was “From Ideas to Health” and the presentation can be seen below (part 1 is first Staffan and then me, in part 2 Staffan continues). The slides from my part of the presentation can be seen separately below the first film.
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On a Tightrope – Life is a Balance!
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 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…)
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:
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:
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…