Going from researching patients to patients researchers

MedX15In 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 have ever come across and always full of people generously sharing their stories relating to medicine and health.

This year I will participate in a panel discussion titled “Going from researching patients to patients researchers” together with the wonderful Susannah Fox, the inspiring entrepreneur/patient Michael Seres and the amazing Eli Pollard. In the panel, we want to discuss how patients’ opinions, knowledge, and experiences can make the whole research process better; from formulating the research questions, to designing, recruiting, and implementing the research as well as disseminating the research results.

We also want to discuss how patients who manage our diseases every day are actually testing hypothesis more or less consciously. Can the knowledge arising from that be captured and disseminated in a structured way?

To start us off in preparing for the panel discussion this September, we want to hear from you! Could you tell us about your experiences?

What do you (or your loved one) do to manage your disease/condition/health challenge other than what you are told by healthcare to do?

Please comment below!

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

#Parkinsons1day

#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!

Parkinson’s never takes a day off

keep-calm-and-keep-moving-forward-1Parkinson’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 itself shares those characteristics, but there is one important difference. For us having Parkinson’s, the downhill slope is much steeper than for people without a neurodegenerative disease for company.

The good thing is: there is plenty we can do to help ourselves! If you have read my blog before, you might remember my visit to the neurorehabilitation centre in Portugal and how much benefit I found from exercise. Unfortunately I find it very difficult to maintain my exercise regimen at home, and one of the main reasons is that I have been struggling to find a physiotherapist within a reasonable geographic area who knows enough about Parkinson’s to be able to help me come to grips with my biggest issue, which is “freezing-of-gait”. I will keep looking and any tips, suggestions and ideas are more than welcome!

I am currently reading a very interesting book that supports my belief in exercise as a very potent complementary treatment for Parkinson’s and many other neurological problems. The book is written by Norman Doidge and is titled “The Brain’s Way of Healing” and was recommended to me by a friend with a complex neurological condition that the medical world have failed to address, leaving my friend to help himself as best he can (which he does quite successfully).

My “Parkie” friends will be interested to know that “The Brain’s Way of Healing” has an entire chapter dedicated to Parkinson’s, where the author in commendable detail gives an account of the experiences of John Pepper. John Pepper is in no way uncontroversial in the Parkinson’s world, being known for his website “Reverse Parkinson’s” and his book with the same name. Without commenting on whether or not John Pepper’s methods are scientifically sound and sufficiently stringent, I can only say that what I read in Doidge’s book really resonated with me and supports my own conviction that my medical treatment for alleviating my Parkinson’s symptoms can be significantly enhanced by the use of exercise.

To me, this is a great consolation on days when Parkinson’s really gets to me and everything feels black and hopeless. Because, I’ll be honest: knowing that Parkinson’s never takes a day off in the constant gnawing away on my motor and non-motor functions is not an easy burden to carry, even on the brightest and sunniest of days. I make sure to remind myself, as often as I can, that every effort I make to keep moving, helps keep neurodegeneration at bay for a little longer. I do my very best to be as stubborn as Parkinson’s is relentless. Time for a walk!

Parkinson’s never takes a day off so neither can I!

Keep calm and keep moving forward!