#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!

“Liberté, égalité, santé!”

libertyLife in 18th century France was probably far from easy, although less difficult for some. The aristocracy were living relatively comfortable lives, where the very small minority were enjoying privileges that the large masses could only dream of. In fact, they couldn’t even dream there was such privileges. And we all remember the allegedly immortal words of the well-meaning but clueless Marie Antoinette: “But if the people don’t have bread, why don’t they eat cakes?”.

I would guess that the aristocracy didn’t really understand what the fuss was all about: “Why are these people upset? We have always taken care of them. We know what is best for them. They don’t need to worry their heads with the problems of the world, they are not even interested anyway…”. And we know what happened: the aristocracy didn’t  have to worry about haircuts ever again…

That attitude feels strangely familiar… And sure, with more rights comes more responsibilities. The right to vote is still not universal, and in Sweden, women didn’t have the same rights to vote as men until 1919. I don’t know about you, but in my opinion, my health is more important to me than who is the prime minister in Sweden (sure, the two are not independent but still).

People often tell me: “But Sara, you have to remember that not all patients are as engaged as you, you are an outlier…” My response is always: “I know that I am an engaged, knowledgable autonomous patient now, but 7 years ago I wasn’t, I was just an ordinary patient.”

The French Revolution, The Suffragett Movement and the Anti-apartheid Movement were all started by outliers. The masses were probably not very interested in what they were shouting about, they just wanted to do their best of a difficult situation… at first…

In my opinion, large parts of healthcare’s logic is based on the assumption that the doctor always knows best. And we patients have accepted that assumption for centuries, but times are changing.

We want to take more responsibility when it comes to our health!

The world cannot afford letting patients’ engagement and knowledge be wasted any longer!

Not patient but im-patient