Sara Riggare

Not patient but im-patient

Tag: WPC

  • WPC2023: “To track or not to track”

    WPC2023: “To track or not to track”

    In July I was in Barcelona to attend the 6th World Parkinson Congress or WPC. As expected, it was a few very intense days with many impressions and interactions. One of my commitments was to speak in a morning plenary session. It was the start of day 2 of the conference and there were people sitting on most of the 1 750 chairs in the room. I was proud and honoured to be part of the impressive lineup.

    Linda and I preparing for our session.

    The main title of the session was “Tracking Disease Progression in Parkinson’s: Why and How?” and it was chaired by neurologist and movement disorder specialist Cecilia Peralta from Argentina together with Linda K Olson who is a physician and person with Parkinson’s, as well as a triple amputee. You can read more about Linda on her website here, and in her captivating memoire “Gone: A Memoir of Love, Body, and Taking Back My Life”. Trust me, you do want to read more about her!

    The full lineup and program of the WPC morning plenary “Tracking Disease Progression in Parkinson’s: Why and How?”

    The first speaker was professor Bas Bloem from Radboud University in the Netherlands who did an excellent job outlining why we should track PD. Equally excellent were the presentations by professor David Standaert and professor Thilo van Eimeren covering blood and tissue-based tests and imaging to track PD.

    A recording of my talk, with the title “To track or not to track” can be found below. It is filmed with a mobile phone so the audio is not perfect. I recommend turning on the captions (in English).

  • Quantified Self for Parkinson (at WPC 2016)

    Kent Unruh:

    Jasmine Sturr, Full version:

    Excerpt: using nicotine vape for managing dyskinesias:

     

  • 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.

  • Travels with Parky

    Travels with Parky

    This is an article I wrote for “On The Move”, the magazine of Parkinson’s Movement on my experiences when travelling to the World Parkinson Congress in Montreal earlier this year. In the magazine, the article had to be slightly edited to fit the space available, but this is the “uncut” version 🙂 .

     

    IMG_7690When preparing for traveling, like everyone with Parkinson, there are a few critical issues to consider:

    1. How many sets of medication should I bring?
    2. Will I have to change my medication timings due to traveling over multiple time zones?

    When preparing for traveling to the World Parkinson Congress in Montreal, there was an additional consideration for me to take into account:

    3. Do I pack an adorable cuddly raccoon in a red hoodie in my check-in luggage or in my carry-on?

    Traveling to Montreal took me on an unusual route: From Stockholm to London for a few days, then on to San Francisco for a few days and from there to Montreal and WPC 2013. I was going to be “on the road” for 16 days, going over multiple time zones several times and attending 3 conferences.

    So that gives the answer to question number 2; yes, I would have to change my medication regimen, several times.

    After a lot of thinking, I decided on four complete sets of medication, to be on the safe side, and to pack one set in my suitcase, one set each in my two carry-ons and to give one set to my colleague. Question number 1 sorted.

    The racoon is of course the loveable mascot of the WPC, Parky, created by initiative of one of my fellow WPC 2013 ambassadors, Canadian Bob Kuhn, to give the people coming to the congress a chance to support the WPC and at the same time have something to bring back to children and grandchildren. Parky proved to be an excellent travel companion. Not only did he help me pack my medications, he was also an excellent ice breaker and conversation starter, but more on that later. And of course, I couldn’t check him in! Question number 3: check!

    Prickbilden

     

    As you all probably know by now, I am an engineer by training and a few years ago, I decided to combine my engineering skills with my patient experiences and try to improve things for myself and others with chronic diseases. Pretty much exactly three years ago, in September 2010, I started studying at a master’s program in Health Informatics at Karolinska Institutet, a program combining technology with all aspects of healthcare. It was just what I was looking for! Just a month into the program, I went to Glasgow for the 2nd World Parkinson Congress, and came back with an even greater conviction that I could really make myself useful and contribute to the Parkinson community.

    In March 2012, I was registered as a PhD student at the department for Learning, Informatics, Management and Ethics at the Karolinska, and my research is focussed around how we can use observations we make about our individual disease to learn and even improve our own health. In my opinion, we can influence the effect our treatments (pharmacological and other treatments) have on us, both for better and for worse. I am not entirely sure of the situation in other parts of the world, but in Sweden, we have a lack of neurologists, and we don’t have that many Parkinson nurses either. This means that I see my neurologist once or twice a year, about 30 minutes every time. In other words, I spend in total one hour in neurological healthcare every year. The rest of the year’s 8 765 hours, I spend in selfcare. During all those hours, I can observe my condition and learn about my individual variations and patterns and this gets easier and less burdensome if I have useful tools, for example different apps and other devices. So, I figure that the information that I can collect during all those hours of selfcare every year, can be of use when I see my neurologist, as a way of giving both him and myself an idea of how I’ve been doing since last time and in my research I am exploring collecting and presenting information that is both relevant and useful, using apps and devices like sensors and other things.

     

    IMG_7495

    IMG_7505 The methodology I am working on in my research, came in very handy when going on this multi-legged trip. I hadn’t travelled much across multiple time zones since starting medicating for Parkinson, so I was concerned about how to adjust my medication timings in the best way so that I would be able to get the most out of all the conferences as well as hopefully also have some energy left. I decided to try to make sure that I could start the next day on every new location with my morning dose on the ordinary time in local time. When travelling west, this meant adding a dose or two during the day of travelling and for travelling east, I took out one or two doses compared to my ordinary daily dose. I tried to keep to the usual intervals between doses to be able to function during the flights as well. The results were very good! I took notes during the travelling on when I took my meds and how I was feeling and I was very happy and a bit surprised that I was able to give my presentations at the conferences as planned and also have energy for some sightseeing.

    IMG_7515IMG_7517IMG_7600IMG_7532IMG_7478

     

     

    Travelling with Parky was, as I said earlier, an enjoyable experience; we had a milkshake together in downtown San Francisco in preparation for a presentation at a Quantified Self meetup (if you haven’t heard of the Quantified Self, google it, I think you’ll find it interesting) and saw the Golden Gate bridge together. He also kept me company in all the airports and made sure my ticket was safe. In Montreal, he helped me meet new friends and basically was the center of attention. But in London, he was a bit out of line… I left him in the apartment we had rented when we were at the Medicine 2.0 conference and when we came back, he had drunk our beer and even eaten our chocolate!

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    IMG_7688

    Safely back in Stockholm, we both are looking forward to going to Portland, Oregon in 2016 and meanwhile, Parky has also made some new friends.

  • Glasgow, city of hope and determination (WPC2010)

     By first glance, Glasgow might seem like just another city anywhere in the world, with its downtown glass-clad buildings and shopping area.

    By the way, how come the Swedish clothes brand that used to be considered really low quality and that no-one in my first grade class would be caught dead in is all over the world these days? And speaking of low quality, would you believe that IKEA had the exact same reputation around that time (1978-ish)? It is two amazing success stories and I wear H&M as well as have a lot of IKEA furniture at home these days without blushing with shame. If PD was only a fraction as well known as H&M and IKEA, awareness wouldn’t really be an issue, would it…?

    Anyway, back to Glasgow: Monday was spent exploring the city, Annika, Lars and me going in and out of shops. It seems a common trait for men all around the world that they by far prefer the Apple store to H&M. As for myself, I don’t discriminate like that, and late afternoon, I returned to my hotel, the very satisfied owner of an iPad. And then they say you can’t buy happiness…

    Tuesday was the beginning of congress with the pre-congress courses on three different levels, where we learned “the fundamentals of PD”. The evening came and so did a very impressive opening ceremony. As far as I’m concerned, as long as there’s pipes and drums, I will like it. There are few things as pleasant to the eye as men in kilts…
    After that the congress really took off and I realised that time does go faster when you are enjoying yourself.

    The week in Glasgow was an overwhelming experience with a lot of emotional moments. I didn’t attend as many sessions as I thought I would, for reasons like prioritising having coffee with a new-found friend, catching up on some sleep or simply hanging out in The Cure Parkinson’s Trust’s stand. However, I don’t regret missing sessions, because what will really stay in my mind is meeting the fantastic people there, PWP, researchers and others. It was amazing to experience the hope, dedication and determination of the whole PD community.

    I will never forget:

    •    Bryn’s speech at the opening ceremony. If you haven’t read it yet, check it out on Bryn’s blog. “The fierce urgency of now…”, I still get goose bumps…

    •    The scientific session where Roger Barker was talking about stem cells and other future treatments. I think that maybe a few researchers were disappointed with the level of it, but I think the PWP attending was very thankful for the crash course in future therapies. He really chose the exact right level!

    •    The Brain Game quiz on Friday, arranged by The Cure Parkinson’s Trust. As a Swede, I had never heard of Tony Hawks hitching round Ireland with a fridge, but he did a very good job hosting it all the same. And I’m sorry Tony, but to me the bigger celebrity in the room was Dr Stanley Fahn, the man who diagnosed Muhammed Ali with PD.

    For me, Glasgow will forever be the city of hope and determination and I’m already looking forward to the next WPC: October 2013 in Montreal, Canada.

  • Travelling to WPC 2010

    My journey to the World Parkinson’s Congress in Glasgow could definitely have had a better start. I was travelling with my PD mates: Annika and Lars and we had done the sensible thing when catching a ridiculously early flight: we stayed the night at the airport. How I wished that I also had been sensible enough to check my passport before going to sleep…

    I learned the hard way that there is NO WAY that they will let you on an airplane carrying the passport of your 7 year old daughter. Consequently, my poor husband learned the hard way what 6 am on a Sunday looks like. He was met at the Arlanda Express fast train two hours later by a VERY grateful wife carrying a brand new single way plane ticket to Edinburgh wearing a face blushing with shame.

    After spending another few hours at the airport waiting for my plane, wondering if Annika and Lars had already had their first taste of any Scottish delicatessen and feeling a bit sorry for the Thai berry-pickers sitting in the departure hall (Thai men and women are every year drafted by Swedish berry-picking companies to travel from Thailand to Sweden and pick lingonberries and blueberries in exchange for very little money. Also, the Swedish berry-picking companies charge an arm and a leg for transport and accommodation, so the poor Thai don’t return to Thailand as rich as they expected to. The world is filled with cynical people…). Finally, I was boarding the plane, only to find myself back on a chair on the inside of the gate half an hour later. The reason was a malfunctioning gyro somewhere on the plane. We passengers waited patiently for an hour and then re-boarded the plane. This time I probably sat in my seat (25C by the way) for a full half hour, before the captain announced that the gyro was now exchanged for a new one.” However”, he added, “we have another problem, totally unrelated to the first one: one of the brakes isn’t working. Unfortunately, this plane will not fly to Edinburgh today.” Every single passenger on the plane let out a sigh of disappointment that was followed by a smaller sigh of hope at the news that another plane would land on the adjacent gate in ten minutes time. That plane would be taking us to our destination after refueling, relocating our baggage and checking the vitals on that plane.

    I felt a distinct sense of déjà vu when walking from the plane towards the gate again and hoped that the next time boarding would be the last time I used my boarding card for this journey. Luckily, my prayers were answered and after a bumpy but otherwise uneventful journey on the Edinburgh bus 100 from the airport to Haymarket, I finally caught up with my PD-friends, about 8 hours late and not in the best of shapes in terms of stress and PD.

    The day after, we took the train from Haymarket station in Edinburgh to Glasgow and had our first glance of the “armadillo” that is the big lecture hall of the Scottish Exhibition and Conference Centre (SECC) where the second World Parkinson’s disease Congress was being held. We were looking forward to the congress and wondering what the week would bring. I don’t know about Annika and Lars, but for me, the days in Glasgow forever changed my life.

    Sara (aviationally challenged)