A small round white pill

One of my containers for my morning doses with one morning dose laid out.

Every morning I have my phone alarm set to ring at 6 am. Every morning, weekday or weekend, workday or holiday, because at 6 am I take my first dose of medication. I take six different pills for my Parkinson’s disease, one to make up for not having a thyroid and one contraceptive. I prepare my morning doses a few weeks at a time in containers with one compartment for each day of the week (see photo) and keep next to my bed together with a bottle of water. That way I can take my meds while still in bed and more often than not, I will go back to sleep for a while longer before getting up. This way the meds will have kicked in when I rise and moving will be a bit less difficult. Continue reading “A small round white pill”

The finest compliment I ever had

Today I learnt that Tom Isaacs, President and co-founder of the Cure Parkinson’s Trust died very suddenly and unexpectedly yesterday morning. Tom is (yes, he still is) one of the most well-known PwP (people with Parkinson’s) in the world and has contributed so much to the global PD community. The world has lost an amazing leader and trail-blazer of the inclusion of patients’ voices on every level of PD research and I have lost a friend, role-model and mentor. Continue reading “The finest compliment I ever had”

Patientcentrerad eller personcentrerad vård för läkarcentrerade patienter?

Som mångårig kronikerpatient har jag ett väldigt stort personligt intresse att vården fungerar men jag har för länge sedan tröttnat på debatten om det ska heta “patientcentrerad vård” eller “personcentrerad vård”. För mig som patient är det så väldigt mycket viktigare vad vården faktiskt innehåller än vad man väljer att kalla det. Continue reading “Patientcentrerad eller personcentrerad vård för läkarcentrerade patienter?”

What is in a fall?

imagesBefore my Parkinson’s had evolved into the kind with “freezing-of-gait”, or FOG for short, that now is far more familiar than I would like, I had a very hard time to wrap my head around the phenomenon: “Why do they just stand there? Why don’t they just lift their feet and walk like they did just a second ago?” Well, these days I know better… Continue reading “What is in a fall?”

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

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Eli Pollard, executive director of the World Parkinson Coalition and myself in front of the entrance to The West Wing
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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!