Sara Riggare

Not patient but im-patient

Category: My writing In English

  • Motivation to fight Parkinson’s

    2014-08-20 08.30.27I have been trying to think of an appropriate symbol for Parkinson’s and finally I have found what I think is the perfect representation: a snail. People with Parkinson’s move slowly, as does the disease itself, but often we are persistent and get where we want in the end, very much like our little mollusc friend.

    This is my fourth day at CNS, the neurological rehabilitation centre in Torres Vedras, close to Lisbon and if you haven’t read my first post of this week, you can find it here. My favourite Portugese, the extremely competent physiotherapist Josefa is observing my every move, but in a good way. We discuss everything relating to Parkinson’s, freezing-of-gait, chocolate, life as a PhD student, shoes, South Africa, and more. We were discussing behaviour change and motivation, since in Parkinson’s, motivation can be very hard to find. The reduced levels of dopamine in our brains does not only make moving extremely challenging, it also has a direct effect on our motivation. This means that although we know that we need to stay active to be able to stay as well as possible, we just cannot be bothered…

    This is where using camera can be very valuable, like in this case, where I was filmed after walking on the treadmill. For me to see that my gait can be so different after only 15-20 minutes walking on a treadmill, makes me extremely motivated to continue fighting Parkinson’s!


    The second rule of Fight club is: use it or loose it!

  • The Fight Parkinson’s Club

    2014-08-20 11.01.23On our way from the airport in Lisbon to the rehabilitation centre  Campus Neurológico Sénior (or CNS for short, pun intended, I’m sure) in Torres Vedras, our wonderful physical therapist, Josefa, says something about “the first rule of…”, and immediately the film “Fight club” springs to my mind. I blurt out “…don’t talk about Fight club” and both Josefa and Jon (who will be instructed by Josefa and her colleagues this week as well) look at me like they think I am completely crazy. When I explain that there is a film with that name and that I just had the idea to call our week at CNS “Fight club”, they seem slightly more relaxed and even seem to think the idea wasn’t half bad.

    I had gone to Portugal with the determination that I will do everything in my power to take control over my freezing-of-gait (I’ve written about it before here and here) and I expect it will not be easy so Fight club seems a good name.

    Parkinson’s is a very complex condition with a lot of different aspects, both motor and non-motor to keep track of. I would still expect Swedish healthcare to be up to speed on the latest research in rehabilitation and high-quality knowledge and experience in Parkinson’s. I am however sorry to say that of the several rehabilitation centres and physical therapists I have come across in Sweden since I’ve had problems with freezing-of-gait, not even one  of them knew anything about it that I didn’t already know myself.

    This is where it REALLY pays off being an activated patient!

    I had met Josefa a few years  earlier at a scientific meeting and we had bumped into each other at different conferences and congresses since then. I remembered that she was working with freezing-of-gait and figured it was worth asking.

    I am very happy I did, because the three first days of training here have been simply mind-blowingly eye-opening!

    Day 1 started with evaluations of gait and I found myself, not surprisingly, freezing instantly when I was told to compete against Josefa and Jon. To my surprise though, the very simple strategy of focussing on the heel worked like a charm. I was almost as fast as them and didn’t even tend to freeze.

    I didn’t for a second dream that I would be able to walk on a treadmill, and here I am after 3 days, walking backwards, turning and following instructions (see video)…

    Where on earth will this end?

    The first rule of Fight club is: do not fall!

    N.B. The descriptions of strategies and exercises in this blog are recommended to me based on individual evaluations by a trained medical professional. They are not to be seen as general advise to people with Parkinson’s.

  • Fighting to stay well

    SisyphusParkinson’s is hard work. A friend of mine, on his way to becoming a neurologist, says to his patients: “Having Parkinson’s is a full time job”. I have never told him, but I have been thinking he exaggerates, but I was wrong. If you want to stay as well as you can, Parkinson’s is a full time job.

    One of the main challenges is that the disease is so complex. We  need to observe a multitude of unpredictable motor symptoms like slowness of movement, tremor (which I don’t have), stiffness and balance problems. But, in light of Robin Williams’ suicide, which might or might not be directly linked to his recent Parkinson’s diagnosis, the implications of low or fluctuating levels of dopamine on our psychological well-being are now more acknowledged.

    As we get farther into the disease, we experience more and more symptoms and the list of complaints gets longer and longer. But how do we know if a new symptom is related to Parkinson’s or not? Well, we don’t. And most of the time, neither do our doctor. “But”, you may ask, “does it really matter if a particular health problem or symptom is related to my Parkinson’s, to the fact that my thyroid was removed a decade ago or to something completely different?” My reply is “it does and it doesn’t”.

    If we start by considering: 1) I have been diagnosed with Parkinson’s and 2) I have had my thyroid removed. These two have certain overlapping effects and symptoms, they can for example both potentially affect my heart rate (see my previous post). So if I discover that my heart rate is affected, do I go to a neurologist or an endocrinologist? As it turned out, I did neither. Instead I used a new (for Sweden) service where you can order your own lab tests online, without having to consult a doctor first. Then you go to a regular lab to have your blood drawn, wait a few days and the results are available online. I used a service called WeRLabs and I am currently waiting for my results.

    As you can see, this question is already very complex. And my elevated heart rate is not even my most troublesome symptom. My least favourite Parkinson’s symptom is freezing-of-gait and this film shows a talk I gave on the topic at the Quantified Self Europe conference in May 2014.

    I am finding it more difficult to cope with my freezing and I do not always feel comfortable crossing the street, especially with heavy traffic. For some time I have felt a need to do something about it and now I am. Tomorrow I fly to Portugal for a week of neurorehabilitation with a physiotherapist who is specialised in Parkinson’s and freezing-of-gait. Of course I will be bringing some self-tracking tools!

    I am looking forward to a week with a lot of new insights and I hope I will find the time to write a blog or two as well.

  • Chronic disease and self-tracking – part 1: heart rate

    The quantified self Counting every moment
    Image from the article “The quantified self Counting every moment”, The Economist March 3rd 2012 (http://www.economist.com/node/21548493)

    Having a chronic disease is lifelong learning, even if you don’t want to. Living with a progressive disease is a challenge on the best of days and if you add the twists and turns that an ordinary life comes with… Well, let’s just say it helps if you are solution-focussed and creative…

    Self-tracking is, in my opinion, the most powerful weapon I can wish for in my battle against Parkinson’s disease (PD) and I will explain why.

    I see my neurologist once or twice a year, about half-an-hour every time. That is one hour per year, and the rest of the year’s 8 765 hours, I spend in selfcare.  This means that I am directly “exposed” to healthcare’s practises and clinical guidelines for my PD during one hour per year. And it is only during this one hour that my neurologist can assess my symptoms, observe my condition and evaluate my status. It is also during this one hour per year that my treatment is being prescribed, different medications and other interventions.

    But it is during the rest of the year’s 8 765 hours, that I implement the treatment. Because, let’s be honest, my neurologist doesn’t even know if I take the medications he prescribes. And, probably most important, it is during the 8 765 hours in selfcare that I can observe the effects of the treatment. And this is where self-tracking comes in.

    As most of my readers probably know, I have been involved in the Quantified Self (QS) community for a few years. I have spoken at all three Quantified Self Europe conferences and my talk from the first one, in 2011, is mentioned in this article from The Economist.

    I hope that the QS community will be able to help me understand my latest “health challenge”. I bought a pulse band last week because I have for a long time wanted to investigate my heart function, mostly out of curiosity. I have worn it on and off for a few days now and have found that my resting heart rate is very high. Sitting here writing this, my HR is in the 90s… I wore the band to a 5 km evening walk yesterday and you can see the result below.

    Screenshot 2014-07-30 10.22.50 crop

    My max HR during the walk was 147 BPM and the average was 118. The lowest HR was 86 and that was during a period of rest around 55 mins in (my back was cramping a bit).

    I also wore the pulse band during last night’s sleep, see below. I accidentally paused the session for a few hours but I think it is probably representative enough. The sharp increase to 102 BPM just at the end is when I got out of bed.

    Screenshot 2014-07-30 09.42.52 crop sleep

    My lowest HR during last night was 66 BPM and the average was 77. The peaks at approx 01:50 hrs and 03:20 hrs are probably the result of me waking up and turning over in bed.

    For me this raises a number of questions, some of which are:

    • Is it PD-related or not? – There is a connection between PD and autonomous nervous system dysfunction, so it could be. But then again, maybe it doesn’t matter if it’s PD-related?
    • Is it connected to my thyroid hormone replacement therapy? It definitely could be, which is why I have made an appointment for checking my T3 and T4 values.
    • Is a high RHR dangerous?

    I would love to hear what you think about this.

  • We need a “Copernican Revolution” in healthcare!

    We need a “Copernican Revolution” in healthcare!

    Motion of Sun, Earth, and Mars according to heliocentrism (left) and to geocentrism (right), before the Copernican-Galilean-Newtonian revolution. Note the retrograde motion of Mars on the right. Yellow dot, Sun; blue, Earth; red, Mars. (In order to get a smooth animation, it is assumed that the period of revolution of Mars is exactly 2 years, instead of the actual value, 1.88 years). The orbits are assumed to be circular, in the heliocentric case. (From: http://en.wikipedia.org/wiki/Copernican_Revolution)
    Motion of Sun, Earth, and Mars according to heliocentrism (left) and to geocentrism (right), before the Copernican-Galilean-Newtonian revolution. Note the retrograde motion of Mars on the right. Yellow dot, Sun; blue, Earth; red, Mars.
    (In order to get a smooth animation, it is assumed that the period of revolution of Mars is exactly 2 years, instead of the actual value, 1.88 years). The orbits are assumed to be circular, in the heliocentric case. (From: http://en.wikipedia.org/wiki/Copernican_Revolution)

    I share my birthday with someone very famous, I would say that almost everybody in the world know his name. At least we all know his work or rather, the result of his work. Nicolaus Copernicus was born 498 years ahead of me, to the day, and of course his work fundamentally changed the way we view the world, literally. I think our similarities start and end with both being born on the 19th of February.

    Copernicus was born as the fourth child to a Preussian merchant and his wife and he truly was a child of the Renaissance. He had a doctorate in Canon law and was also a physician, astronomer, classics scholar, translator, governor, diplomat and economist (Source: http://en.wikipedia.org/wiki/Nicolaus_Copernicus).

    Around the time of 1532, Copernicus’ work had resulted in a manuscript titled De revolutionibus orbium coelestium (On the Revolutions of the Heavenly Spheres), where he challenged the ancient geocentric view of the universe.

    The work of Copernicus was further developed by Danish nobleman and astronomer Tycho Brahe (known to have died as a result of refusing to violate etiquette by leaving a banquet to go pee), German scientist Johannes Kepler and Italian scientist Galilei Galileo. The book Philosophiæ Naturalis Principia Mathematica, Latin for “Mathematical Principles of Natural Philosophy“, often referred to as simply the Principia by English mathematician and sir Isaac Newton confirmed the hypothesis of Copernicus a “mere” 155 years after it was postulated.

    You are probably wondering what this unwarranted history lesson has to do with healthcare? Well, in my view, healthcare is in dire need of a Copernican Revolution. We need to go from the current healthcare-centric paradigm of healthcare to the natural and, to me, obvious patient-centric paradigm. “But”, I hear you say, “surely healthcare is already and has always been putting the patient in the centre of attention”. Sure, but “the centre of attention” is not the same as being patient-centric. Let me give you an example:

    A friend of mine spent some time in the hospital recently. He also has Parkinson’s and since he took ill rather suddenly, he didn’t have his medications with him to the hospital. If you know something about Parkinson’s, you know that our medications are what keeps us going, keeps us moving, and without it, we would not be able to function very well. My friend had notified the nurses at the ward about his problem and told them that he needed to have his medications as soon as possible. They told him that they would get him what he needed when the hospital pharmacy opened at 10 o’clock the next morning. The next morning came and my friend reminded the nurses of his need. He was told that they would get his medications in due time. My friend was becoming increasingly rigid and he tried to tell the nurses that he really needed his medications. At this point, he was probably recognised as “another one of those difficult patients who think they know our job better than we do” and all the while he was getting less and less able to move by the minute. When a nurse finally arrived with the medication he needed, she had to put them in his mouth as he was no longer able to do it himself. He told her to come back in half an hour and she wondered if he would really need more medication that soon. No, he said, I want you to see the effect these drugs have on me. She came back with a colleague 45 minutes later and the patient she had left not even able to raise his hand to his mouth, was now sitting up straight in a chair, cheerfully reading a newspaper. He saw her surprise and said “Can you see what the medications do for me? Do you understand now why I need my pills when I say I need them and not when it suits your schedule?”.

    The transition from a healthcare-centric system to a patient-centric one will not be easy, no more than the transition to a heliocentric view of the world was.

    But I sincerely hope that we won’t have to wait 155 years for it to be completed!

  • “Patients included” for REAL!!!

    This is a fantastic campaign on Medstartr by “The Joan of Arc of e-patients” Casey Quinlan! Casey and the rest of the gang at Patients for Clinical Research want to collect a “War chest” where patients who want to go to medical conferences can apply for funding.

    I LOVE AND SUPPORT THIS IDEA!

    What about you?

    [dciframe]http://www.medstartr.com/projects/374-patients-for-clinical-research-drive-patients-included/video_embed,400,400,0,auto,border:2px solid grey;align:center;[/dciframe]

  • My take on patient participation

    onlinesurveyIn september 2013 I wrote a blog in Swedish fuelled by my frustration over the current situation regarding patient participation. I gave it the title “Enough is enough” (although in Swedish obviously). The blog seemed to resonate with a lot of people so I followed up with a blog with my suggestion as to a few questions for stimulating discussions. Here they are in English:

    Question number 1: Why?

    Why does the organisation/project/company want to engage patients? What do they want to accomplish by engaging patients? What kind of value do they see that the patients can add? What are their expectations on the patients’ participation?

    Question number 2: How?

    How are patients being engaged? Are the patients given what they need to contribute in a reasonable way to what they have been engaged to do? What does the process look like to ensure that the patients are given the influence and mandate they need to be able to do a good job? How is the patients’ participation facilitated by compensating them for the time and money they spend to be able to participate?

    Question number 3: When?

    When in the process are patients being included? Are they asked their opinion only when the result is to be approved and are expected to simply agree (because if they don’t, they are considered difficult to work with and will not be invited next time)? Or are they invited to constructively contribute to an honest evaluation? Are they maybe even given the opportunity to actively participate in the implementation of the project prior to evaluation? Is anyone bold enough to invite patients to participate already in the design phase? Unfortunately, I don’t think there are a lot of examples yet where patients have been given a genuine invitation to contribute as early as the planning phase and all the way through the steps to evaluation. If you know of any, please comment below.

     

    Coming up with these questions was in no way the work if me alone, it was a collaboration with among others: @Durgastoolbox @Doctor4Quality @hannek12 @Gripenfighter @ElenaNoMad.

    In the discussion following the Swedish blog post, a few additional questions were suggested:

    Question number 4: Where? (by @KennethJohnson_)

    Where in the organisation are patients engaged? On all levels? Why/why not?

    Kontrollfråga 5: (by @Durgastoolbox)

    Are YOU prepared to change when you engage patients? #patientengagement = #profengagement

     

    I want to emphasise that in my view, there are no right or wrong answers to these questions. If the organisation/project/company don’t see any true value in engaging patients, they shouldn’t. But I think that these questions could serve as a way of initiating an honest discussion on patient participation.

    Please comment and add your view!

     

     

  • Goal setting in the time of neurodegeneration

    FireworksThe end of another year is approaching – always a good time for reflections, evaluations and decisions… or…?

    I have never made any New Year’s resolutions and I have only recently started setting goals for myself.

    I remember a discussion I had with my younger brother on a summer’s night probably around 20 years ago. We were in the attic of our grandparents’ summer cottage in the Swedish country side having a chat about “life, the universe and everything” before going to sleep on our beds among the spare furniture that were stored up there. Both in our mid-twenties, we were faced with the scary wonders of adulthood, including decisions like: “What sort of job do I want?”, “Where do I want to live?”, “Do I want to start a family?” etc. I  think that both my brother and I had found our first jobs after university at that time and I remember my brother telling me about his goals in life, how he was planning to be married and have children within, I think he said 10 years time. When I told him that I had not made any such goals for myself, he was very surprised. I was also surprised, but for a completely different reason. My surprise came from realising that other people had different possibilities in the way they saw their lives. It had never occurred to me to set goals for myself, due to the fact that I already at that early age knew that my body wouldn’t always do what I asked of it. I simply didn’t see any point in setting goals when I wouldn’t know what I would be able to do even a month later, let alone a year.

    I didn’t plan my life, life more or less happened to me. At times I would really struggle with walking, I would move really slow and fine movements, like buttoning buttons or tying my shoelaces, were a challenge. Somewhere around this time, the implications of the diagnosis of generalised dystonia that I was given in my late teens, started to hit me. I had just started taking medication, which gave me some relief from the tension in my muscles and gave me a slightly more even gait. However, I was in no way in a position to feel confident enough to make plans for the future…

    In the year 2000, this all changed. My neurologist had read about a type of generalised dystonia that responded well to levodopa, a medication mainly used for Parkinson’s disease, and he suggested I try it. He gave me a schedule for slowly increasing the dose until I could notice an effect, and boy, was there an effect!!! I won’t bore you with the details, but in short, my life was fundamentally changed! For the first time since I could remember, I could actually move without feeling like I was walking in water up to my neck, my fingers were suddenly very agile and I was the happiest person alive!

    The mobility the new medication gave me, led to new ideas and wishes in life, wishes I hadn’t known I had and in January 2003, we had a daughter, a beautiful baby girl. Born nearly three weeks early, she was very small but with a strong will and she is still, almost 11 years later, equally impatient and strong-willed. Our lives changed forever and we loved it!

    Later that same year, I was told by another neurologist that I didn’t have generalised dystonia, I had Parkinson’s disease… Parkinson’s disease… It felt like I fell down into a black hole and I have my darling daughter and her father to thank for making me realise that I had so much more to gain from digging my way back up again than staying down there.

    As you can imagine, being diagnosed with a neurodegenerative disease that is very much associated with older people at the age of 32 didn’t really promote goal setting activities… so it took me a few years until I felt confident enough, but here is the result of my first attempt at written goal setting:

    Mål 2010-07-10

    In translation it reads:

    “Goal setting for the first time, 12 July 2010

    Goal for the summer (before 19 August):

    Learn to walk my tightrope properly

    Get my priorities right

    Longterm goal:

    Never have to have a DBS

    Be able to make a living out of my interest for Parkinson’s disease”

    I actually think I have reached a few of them in some way, we’ll see what next year brings. Maybe this is the time for my first New Year’s resolutions?

  • 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!

    IMG_7590

    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.

  • Bruised knees and bruised ego…

    IMG_7670

    I have a new friend. She can be seen on the photo here and I picked her up in a shop the other day. A few days earlier I had no idea that I would feel the need to pick her up, but there you go, that’s life I guess.

    On Monday I went to work as usual, went to a few meetings in the morning, more or less ‘business as usual’. For lunch, I thought I’d show my two colleagues the brand new auditorium and the lunch restaurant there, so we took a short walk and went into the building that looks like a giant glass bowl. Of course, if you give three engineers the choice of three different dishes for lunch, they will pick one each. We went looking for a table, sat down with salmon on a bed of fennel, a giant ball of mince of lamb with mash and a Swedish quiche on a bed of greens, and no, the woman in the party (me) did not have the quiche…

    Having finished both the food and the mandatory Swedish ‘fika’ (coffee or tea plus something sweet, like a cookie or cake or similar), we took our trays and made our way through the spacious restaurant towards the place for dirty dishes and I found myself thinking: “hmmmm, if I were to see someone I recognise sitting at those tables, I would probably find myself freezing…”. For those of you readers lucky enough to not understand the meaning of that sentence, here is a brief video from youtube (for the extra interested, look here). There is a lot to be said about this mysterious speciality of a fascinating disease, but that’s for another day, back to the restaurant…

    You will probably find this just as hard to believe as my brain did, but exactly as that thought (“hmmmm, if I were to see someone I recognise sitting at those tables, I would probably find myself freezing…”) had flickered through my brain, I actually did see someone I recognised, and even before I had consciously noted that the pattern recognition system of my defective brain had identified a match with the increasing numbers of posts in the “database”, my knees had stopped working… As an immediate result, my feet were completely stuck to the brand new floor. Unfortunately, the rest of my body hadn’t been made aware of this sudden change of priorities, and therefore continued in the previously agreed direction. Before I knew it, my knees were hitting the aforementioned floor (ouch!) and my adrenaline levels skyrocketed. The most unexpected thing is, would you believe it, that I didn’t drop my tray!!!! The other guests in the restaurant applauded as I got back up on my feet, with the tray still intact. I made a sort of curtsey and handed over the tray to the man who completely unknowingly put me in this awkward position by being someone I knew; one of my PhD supervisors as well as a neurologist. He completely understood why I was looking like I was glued to the floor, as did the person he was having lunch with; a professor in neuroscience, and the former came to help me. I have no idea how, but I made my way towards my surprised colleagues and we left the restaurant full of people with an interesting story to share at the dinner table. My knees were tender from the impact, but more than that, my ego was badly bruised…

    When the shock had settled slightly, I decided that I would do my best not to let this limit my life any more than absolutely necessary so after some Facebook facilitated advising with a few people around the world, I decided that I needed a new friend. The decision did not come easily and using it still takes a lot of “pride swallowing”…

    Would you help me choosing a name for her?

    To be continued…