From The White House to the red house

27391430571_c3a2c63c46_hLast week was a week of contrasts for me. On Tuesday I left Stockholm for New York City and the purpose of my trip was to attend a workshop at The White House in Washington DC. The workshop was on a topic very close to my heart: engaging participants as partners in research and it was organised jointly by the conference Stanford Medicine X and the Office of Science and Technology Policy at The White House. The intention from the organisers was to, by using design principles, 1) identify what’s working, 2) strengthen the community of innovators in the area, and 3) accelerate progress.

The amazing dr Larry Chu, anaesthesiologist at Stanford and executive director of the most patient-centered conference in the world, Stanford Medicine X.
The amazing dr Larry Chu, anaesthesiologist at Stanford and executive director of the most patient-centered conference in the world, Stanford Medicine X.

Exploring opportunities and challenges relating to engaging participants as partners in research is of course important. But I think there is also a bigger issue at play here, namely WHY we should engage participants as partners in research in the first place. In an article from 2015 called “We the scientists”: a Human Right to Citizen Science (Vayena E, Tasioulas J. “We the Scientists”: a Human Right to Citizen Science. Philos Technol. 2015;28(3):479-485. doi:10.1007/s13347-015-0204-0.) , authors Vayena and Tasioulas discuss the human right to science and connects it to article 27 of the 1948 Universal Declaration of Human Rights. Vayena and Tasioulas argue that participation in science should range from being a professional scientist to being a participant in a conventional clinical trial performed by professional scientists but also include more active participation in the form of e.g. individuals contributing data or observations, collaborating with researchers on funding research, setting the research agenda, and participants even taking the lead in initiating, designing and carrying out the research themselves.

And if a reference to the Declaration of Human Rights is not enough

Claudia Williams, Senior Health and Health IT advisor at The White House and co-convener of the workshop, with Nick Dawson, Executive Board Member, Stanford Medicine X.
Claudia Williams, Senior Health and Health IT advisor at The White House and co-convener of the workshop, with Nick Dawson, Executive Board Member, Stanford Medicine X.

to convince you, consider this: In the ‘dark ages’, before the Internet, knowledge was scarce. If you wanted to learn medicine, you had to go to university to study. Sure, you could pick up bits and pieces in books at the library but on the whole, (medical) knowledge was difficult to come by on your own. Times are very different now, we can all learn literally everything we want, using the tools and information available to us online. And in my opinion, it is a good thing that knowledge is democratised and available, it offers us plenty of opportunities but also a few significant challenges. One of the most exciting opportunities, and if you ask me, probably the best thing since sliced bread, is that we are now so many more people that can access the knowledge necessary to collaborate to solve the many remaining medical mysteries, like how to cure cystic fibrosis, cancer or genetic prion disease, or how to design better cardiac defibrillators or closed-loop-glucose-monitors-insulin-pumps or stoma bags and also how to enable us all to communicate across obstacles caused by injuries or diseases. Slightly more discouraging is that we are basically still doing research in the same old way as we did in the not-so-long-ago pre-internet days. Why are we doing that? Wouldn’t you say that it is an extreme waste of great minds with so much to give to NOT engage participants as partners? Who can be in a better position to help tease out which issues research should focus on than we, who are living with these diseases every hour of every day?

When I returned to Sweden, I went straight to our place in the Swedish countryside (see pic below), where my family owns a few houses right by a lake in the beautiful area of Bergslagen. The red house is my absolute favourite place in the whole world and as I was enjoying “fika” with my family, telling them about my travels, I was struck by the extreme contrast between The White House and the red house and that I am very fortunate to be able to experience such a wide range of environments. The work we all did at that workshop in The White House is a step in the right direction. My hope is that the work we started in The White House will lead to scientific progress so that many more of the Emilys, Hugos, Erins, Michaels, Danas, Sonias, Matts, Corries, Annes, Dougs, Jelicas, Cliftons, and Saras of the world can spend more time in their “red houses”. And I think it is possible, because these issues are too important not to deal with. These issues matter to people both in The White House and in the red house!

Here is a link to information on the event on the website of Stanford MedicineX

2016-06-02 18.43.58
Eli Pollard, executive director of the World Parkinson Coalition and myself in front of the entrance to The West Wing
2016-06-04 15.56.24
In front of my favourite place on earth, our place in the Swedish countryside, where we spend as much of our free time as possible. The log house is painted in the red colour traditional to this area.

Neuroscience – theory and practice

My extra dopamine
My extra dopamine – on my left arm

I’m sure most of you have seen me write once or twice before that PD is a very complex disease, but it bears repeating:

PD is a very complex disease!

Let me explain to those of you lucky enough not to know first hand (or by proxy, like my husband and daughter do). If you’ve followed my work, you probably know about my complicated medication regimen, not unusually complicated if you have PD but very much key to my health and well-being. There are essentially four major types of PD meds: L-dopa (or levodopa), which goes into the brain and transforms into dopamine, the neurotransmitter that PD “steals” from us, dopamine agonists (or DA’s for short), which “imitates” some of the effects of dopamine in our brains, COMT inhibitors, which when taken simultaneously with L-dopa, lengthens the active period of the L-dopa, and MAO-B inhibitors, which helps to block the natural breakdown of dopamine in the brain. All of these act to increase the levels or effects of dopamine in our brains, which in turn restores some or even most of our normal patterns of movement as well as addresses, to a varying degree, the non-motor symptoms that comes with reduced levels of dopamine in the brain, such as for example depression, autonomic dysfunction, pain or sleep issues. My medication regimen consists of one of each of these types of PD meds, in different combinations throughout the day.

Neurotransmitters are chemicals that that help transmit signals in our brains, from one nerve call to another nerve cell, muscle cell or gland cell. There are plenty of different neurotransmitters, each with different chemical compositions, purposes and functions in our nervous systems. Dopamine is one of the most important for controlling our movements and is also involved in the reward system in our brains. Another important neurotransmitter is acetylcholine, which interestingly also is involved in our movement, it helps control our muscles. Acetylcholine also plays an important role in attention and motivation.

So why am I giving you a crash course in neuro science? Well, apart from the fact that the brain is the most sexy organ there is (look up the word “sapiosexual”), as a person with PD, my curiosity in neurotransmitters has very recently been key in my successfully managing an increasingly difficult disease.

During the last few years, I have been increasingly troubled by freezing-of-gait, my least favourite PD symptom. (For more info on freezing-of-gait, see: Bruised knees and bruised ego…Sara Riggare on ‘How Not To Fall’ and Parkinson’s never takes a day off). Imagine my delight when a study was published in The Lancet Neurology in January of this year titled: “Rivastigmine for gait stability in patients with Parkinson’s disease (ReSPonD): a randomised, double-blind, placebo-controlled, phase 2 trial“, and, being the engaged patient I am, I emailed my neurologist, attaching the article, asking him for a prescription. A few days later, I went to the pharmacy and picked up my new medication, Rivastigmine, which is an acetylcholinesterase inhibitor, meaning that it inhibits the enzymes responsible for the breakdown of the neurotransmitter acetylcholine in the brain, thereby increasing the levels of acetylcholine. The article argues that treatment with an acetylcholinesterase inhibitor could improve gait stability in people with Parkinson’s who have fallen during the last year.

During the following weeks I followed the scheme my neurologist had given me for introducing this new medication, while trying to find a constructive balance between objectively observing the potential effects and living life as usual.  After a rather terrifying experience when I went from 3 to 6 mg in my morning dose, I tapered it off again. The terrifying part meant that I found myself more or less unable to move, literally, a few hours after taking this higher dose. I felt almost like a statue and it would have been very interesting if I hadn’t felt so scared. I was very glad to get hold of my PD friend, who also is a neuroscientist at that time. He gave me a bit of a lecture about neurotransmitters and assured me that the effect was likely to wear off and my mobility return to normal (for a Parkie). Later that day, I could confirm his theory, at which point he was kind enough to point out to me that I couldn’t know for certain that the Rivastigmine was responsible for the effect I experienced unless I repeated the experiment. I haven’t. Yet.

I went back to 3 mg per day and over the last few weeks, I have found myself really struggling with moving and walking. I usually say that living with PD takes an olympic gold in stubbornness, but over these last few weeks, it has been much tougher than I probably have been prepared to admit to myself. Thinking back, I have not been able to do much more than doing my daily dose of exercise, working, falling asleep on the couch, watching TV and then going to bed. And with PD, you can’t really be sure what’s wrong until you’ve done a fair amount of troubleshooting:

First, observation: “Hmmm, I don’t feel well today… my whole body is heavy, my back hurts, my hands move slowly… even more slowly than usual…. I wonder what’s wrong…?”.

Then, hypothesis testing: “Am I coming down with something…? Do I have a pinched nerve in my back or lumbago….? Or did I forget to take my meds….? Have I been stressing too much… or sleeping badly….? Or…., the worst fear: is my PD suddenly progressing faster…?”

This kind of troubleshooting takes some time, as you can imagine… But I am very happy to tell you that I feel much better today! So, what is different today? I’ll tell you: My neuroscientist friend with PD told me that our movements are really controlled by the balance between dopamine and acetylcholine (this is of course an extremely simplified explanation) and in simple terms: the Rivastigmine was likely to somewhat cancel out the effect of my dopamine enhancing medication. When this crucial piece of information had reached its way into my brain, I formed a new hypothesis which I tested this morning: this morning, I took more L-dopa than I usually do and what a success it was! It was such a relief to be able to move effortlessly again (well, effortless by PD standards anyway…)! My family and colleagues will tell you that I have been smiling the entire day from the pure joy of moving!

This approach enables me to keep living as well as I can with this very complex disease!

45 and counting

stock-photo-14302068-45th-birthday-candlesIt was my birthday last Friday, on the 19th of February. This year I turned 45 and was honoured, grateful and very happy for all the birthday greetings that came flooding in from all corners of the world via Facebook. On days like that I really love social media. I had a very good day with productive work meetings and a very nice “fika” (one of the most important Swedish words and concepts, if you don’t know what it means, check out Wikipedia) with my colleagues and a “kladdkaka” baked by my daughter and her friend. The evening was spent at a bowling alley with family and friends. On the whole a very nice birthday!

When I was in my early teens, like all teenagers, I thought people in their 40s were ancient. Strangely enough, having reached that age myself, I still feel sort of young. But I guess it is just another piece of evidence that Einstein was right: time is relative.

Honestly though, living to see 45 is not really impressive these days, when the average life span for women in Sweden now being 84 years. What impresses me however, is how my body still keeps hanging in there.

I’ve had Parkinson for over 30 years now, and I have been told that I make it look so easy. I am actually not sure if “making Parkinson look easy” is doing myself or the Parkinson community any favours but I am not doing it on purpose. Because I can assure you that it is not easy, managing Parkinson takes a lot of hard work. And I have come to realise that all the medicines  I take, see pic below,  are not enough.

My meds for one day.

My pills for one day. The first column is my early morning dose, the second is for late morning, the third is afternoon, the fourth is early evening and the last column is for late evening.

The longer I have Parkinson, the more convinced I am of how essential it is to stay physically and mentally active. The mentally active part has not been a problem so far, I love challenging my mind in discussions, riddles and puzzles. I also love knitting, which is said to be good for your brain and even decrease the risk for dementia.

Staying physically active with a difficult disease like Parkinson is however very challenging. Ever since I couldn’t keep up with my mother and brother when we went cross-country skiing up north when I was a teenager, I have been struggling to keep physically active. None of us had any idea then that my inability to keep up was caused by a neurodegenerative disease and I was perceived as “lazy”. I didn’t know what was wrong but it was very frustrating when my body didn’t work and I cried a lot when I couldn’t keep up.

Nowadays I am almost painfully aware of the importance of exercise.  If for some reason, be it a bad cold, travelling or a busy schedule, I am unable to get my dose of treadmill walking, I know it will take a lot of work to make up for it. Parkinson is also a very unpredictable disease, some days, with no apparent explanation, nothing works and I spend the day moving very slowly and trying to find a comfortable way of sitting or lying down. Fortunately days like that are few and far apart… for now.

This is why I am so very grateful that my body still responds well to me constantly pushing it. Pushing towards and beyond what I thought possible… over and over again.

It takes a lot of really hard work to make Parkinson look this good!

Photo from my presentation at the half-time review of my doctoral studies, taken by Hiba Mualla.
Photo from my presentation at the half-time review of my doctoral studies on 5th June 2015, taken by Hiba Mualla.

Not patient but im-patient