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!

Tomorrow, 2nd June 2015, is my #Parkinsons1day!

#Parkinsons1dayTomorrow 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 follow me if you like. I described this project in a post yesterday and I will start at 6 am my time, which is Central European Time, when I take my first dose of medications for the day. Throughout the day, I will share my experiences, feelings, thoughts etc relating to Parkinson’s as much as I have time for or my fingers allow. I have no idea where this will take me, but I am sure I will learn a lot!

If you want to know how it goes, follow #Parkinsons1day on Twitter tomorrow on 2nd June 2015!



#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 treatments, clinical trials, the latest science, and how it all fits into the context of their experience. The community started in cancer but is now also moving into other diseases and conditions.

In april 2015, a few persons affected by Cystic Fibrosis (CF) were matched with people who wanted to learn about CF with the support of Smart Patients. The experiences were shared on social media and described in this post on Smart Patients.

And now, yes you guessed it, it’s time for Parkinson’s! I will be sharing my experiences of living with Parkinson’s during one day next week with Gilles Frydman and on social media. Follow the hashtag #Parkinsons1day on Twitter for more information!

I have made some preparations for people who don’t know so much about Parkinson’s. On this page you can find information I collated about Parkinson’s and below is a video describing my medication regimen. If you want to ask questions, just comment below!

Not patient but im-patient