Sara Riggare

Not patient but im-patient

Category: In English

  • Learning through observations

    When I was diagnosed with Parkinson’s at the age of 32, I was of course devastated. I had a nine-months-old baby at home and they tell me I have an incurable, neurodegenerative disease…?

    I felt like I was inside a black hole and thought I would never smile again. However, with a baby in the house, the smiles came back and I started to live again. Slowly but steadily, I was able to understand more about this strange disease and even more importantly, I was able to understand the features of my own particular flavour of Parkinson’s.
    Because, as we all know, Parkinson’s is highly individual in nature and my specific combination of symptoms are probably more or less unique to me.

    What I found was that by more consciously observing myself and my symptoms and especially the effects my medication had on me, the more I learned about the variations and patterns of my disease. And the more I knew about the variations and patterns of my disease, the more I could understand what made the symptoms worse, what made them less troublesome and how to get through difficult periods when nothing seemed to work.

    Almost 10 years have passed since my diagnosis and every day holds challenges due to the disease (and of course also challenges completely unrelated to the disease). Nevertheless, I truly believe that I am in better shape than I have ever been, both physically and psychologically. And maybe it is all self-deception, but who cares as long as it works 🙂 . I make an effort to see good things in what I experience every day and I am very happy to be able to do all the things I do and all the fantastic people I meet. Of course, not every day is great and of course there are people I wish I had the time to meet more often than I do, but that is no different from most everybody else.

    The more I learn and acknowledge my own personal challenges, the more I can take them into account when doing my best to navigate the interesting ocean of life.

     

  • What is the outcome of healthcare?

    As a person living with a chronic disease, I am very grateful to healthcare. I would not be able to live my life like I want to and like I do, if it wasn’t for healthcare. I am completely dependent of my medications, in fact if it wasn’t for my white, red and pink pills, I wouldn’t be able to move around… at all… Without my rigid medication regimen, (6 different prescription drugs, 6 times a day, in 6 different combinations and with 6 different time intervals…), I would most likely be bedridden and very probably catch some unpleasant problem that comes with a sedentary lifestyle, like thrombosis or pneumonia.

    I am lucky enough to have found a neurologist who both believes in and practices Shared Decision Making and this has probably accelerated my path towards becoming an extremely active patient. And for me, to participate as much as possible in decisions about my health, makes me feel more in control, even on bad days, because most of the time I know why I am having a bad day (lack of sleep, too much stress, not enough exercise, take your pick…). And to me this is the outcome of good healthcare, and I also want to claim that this outcome is equal with health.

    To me health is an individual state of mind where I most of the time successfully put myself and my current situation into a context of wellbeing.

    … and how can you measure that…?

  • Health is about responsibility

    Health is about responsibility. I am not sure of the situation in other countries, but in Sweden I get the feeling that people in general have given up their responsibility for their personal health. They expect someone else to be liable if their health fails them.

    Of course, there might be more or less reasonable explanations for this and the Swedish well-known high taxes does give us citizens a lot of valuable benefits. Our schools are completely free of charge, including higher education like universities. In fact, the government actually gives university students an allowance of around 1,000 USD (7000 SEK) per month to support higher education.

    When it comes to healthcare in Sweden, we are fortunate to have a reasonably good access to high quality healthcare at a very low cost. Swedish citizens pay no more than about 130 USD (900 SEK) per year for primary and secondary healthcare and for tertiary care the fee is not very high either. For prescription medication, an individual pays no more than 260 USD (1800 SEK) per year, regardless of the price of the drug. The balance up to the actual cost for the care and medications is covered by the social security system.

    I have absolutely no reason to complain, this system really benefits me personally, since I take medication at an actual cost of approx 15 USD (100 SEK) per day or over 5000 USD per year. Of course, to me personally, this system is a life-saver, since I would be more or less completely unable to move without my medication. But I definitely think that this system also gives Sweden a reasonable ROI, since this investment actually enables me to work and contribute actively to society as well as reduces my use of other healthcare resources.

    Naturally, this system also has downsides. In my opinion, a healthcare system where the individual pays practically next to nothing of the actual cost for care directly, makes people a bit spoilt. Services that are free of charge are not really valued in Sweden. But this is to me a very light burden to bear, since it provides us Swedes with an usually equitable healthcare system.

    The other major problem I see with the “Swedish model”, where the government basically has taken a very large responsibility for its citizens, is exactly that; responsibility. In my opinion, most people in Sweden have actually, more or less consciously, given up the responsibility for their own health and expects someone else to take it for them. To me, health is about responsibility, responsibility for your body, responsibility for your wellbeing, responsibility for your life. I am not saying that I have the responsibility to heal myself, but I definitely have the responsibility for acquiring the necessary knowledge for my own health issues and manage them accordingly. To me, health is about being responsible for knowing when I can manage a health issue myself and when I need professional help.

    I have the responsibility to take care of myself, because no-one else can be expected to and that is the way it should be. I am fully aware of my responsibility, but that doesn’t mean that I can always manage by myself. I need help, but it is my responsibility to seek it when I need it. And in my opinion, healthcare has the responsibility to meet my needs. But not necessarily in full.

    There has to be a balance between 1) my expectations or hopes for improvements in my personal health, 2) what is medically and technically feasible and 3) what is economically reasonable.

    To me, this forms the basis for Shared Decision Making in healthcare.

  • Method description

    To evaluate the effects of my medications, I use an app on my iPhone.
    I don’t have the tremor that most people (including myself) associate with Parkinson’s, but instead I have bradykinesia (slowness of movement) and rigidity with a bit of balance and gait problems, just to make it more interesting.  
    I did know that tapping tests are used to evaluate Parkinson’s clinically so I looked for a tapping test on my iPhone and found “FastFingers”. The app has a window divided in two halves and I think that you are supposed to alternate the tapping between the two halves, but I only use one side. I make sure that the lower part of my palm, thumb, ring finger and little finger are resting against the table, see photo, and tap with my middle finger as fast as I can for 30 seconds. I do this with my right and my left hand a number of times throughout the day and record the results (time and number of taps).

    I started collecting baseline data a number of weeks ago and actually found it more difficult than expected to capture enough data in a day to be able to find meaningful patterns. I was able to record enough data for two days, 12th and 13th March, and the results are plotted below with number of taps in 30 seconds on the y-axis and the time for the test on the x-axis. I also included a control, a.k.a. hubby 🙂

  • Very preliminary analysis after two days on new dose

    Thank you Zalamanda and Marten, for your comments on my previous post. Of course, I agree with both of you, two days is far too short a time to expect any kind of significant results. Nevertheless, I did observe some potentially interesting findings in these two days.

    The first graph shows the measurements i did on my very first day on the new dose. And the small change I did was that I now take my second dose of the day, a “type A” medication (see a previous post here) at 11 am instead of 11:30 am and have also added a “type C” medication, that hopefully will make this dose last longer and if I’m lucky, the dose will have effect until dose number 3 at 3 pm so I don’t have to take that earlier.

    Interestingly enough, the measurements of the very first day on the new dose, indicates that the small shift in time for dose number 2 actually has an effect. Both my right and my left hand scores very high around 1 pm, pointing towards a distinct effect of the changed timing.

    At first glance, the results from the second day (second graph) is less optimistic, there is no sign of the peak around 1 pm. However, the observant reader will notice that there are no measurements recorded between approximately 11 am and 3 pm (shame on me…), meaning that the function in my fingers might very well have peaked during that time without me having recorded it.

    Mental note to self: Make sure to record frequently, especially between 11 am and 3 pm.

  • Results after two days on my new dose

    I have compiled the measurements during these last two days, see below. Compared with my base line measurements, they look very random and I will attempt some sort of analysis tomorrow.

  • New dose day 2

    The first day on the tweaked dose went OK, no fantastic change, but I didn’t expect that either. Let me try explaining in some more detail, how the different Parkinson’s medication works.

    Remember the different types of Parkinson’s medication I mentioned yesterday?
    Let’s call the levo-dopa based medication type A. Further, let’s call the kind that imitates the effects of dopamine type B. You might remember that there are two kinds of Parkinson’s medication that inhibits the transformation of dopamine into other chemicals. One type has no effect by itself, but only when taken at  the same time as type A, we can call this kind of medication type C. And let’s call the last kind type D. All these different drugs behave differently in the body, they have different uptake rates and biological half-lives (this is where my background in chemical engineering comes very handy). And this, as you might realise, results in an extremely complicated system of different chemical reactions, that in an ideal situation would give me an even concentration of the substances lacking in my brain. Unfortunately, there is no easy way of measuring the concentration of these substances, so instead I try measuring the effect of these substances, meaning that I try to find ways to evaluate my different symptoms objectively, but more about the measurements in a later post.

    My “old” medication regimen consisted of:

    6 am: A+B+C+D
    11:30 am: A
    3 pm: A+B+C
    6:30 pm: A+B
    9 pm: C
    10:30 pm: A

    As you can see, the regimen is in no way simple, but it has served me very well for the last few years. You might notice that my 11:30 dose consisted of only a type A and if you have been really paying attention, you might wonder why I don’t enhance the effect of the A with a C…. which is exactly what I have done. My “new” regimen is identical with the old one, save dose number 2 of the day. I now take it half an hour earlier and have added a type C. This might sound like a ridiculously small change, but I want to reduce the risk of getting unpleasant side effects. I use my iPhone, iPad and laptop to monitor the effect of the change. More about that later.

  • New dose day 1

    These last few days have made me even more aware of how extremely dependent I am of my medications, and if you’re reading this and have Parkinson’s yourself, this is probably very much old news. For people who have not experienced this, I completely understand that this is difficult to understand.
    Let me quote an analogue that an experienced and very appreciated neurologist use to describe the process:

    Currently, the ruling theory is that the wide range of symptoms falling under the Parkinson’s disease umbrella are caused by a lack of dopamine in the brain. Dopamine is one of a number of neurotransmitters, that together constitutes the signaling system within the brain. (I say currently, because there are theories that other neurotransmitters are also affected). However, the neurologist in question says that dopamine acts like the power steering (“servostyrning” in Swedish), i.e. making movements smoother and less effort-demanding. If the power steering fails, the car can still move and turn, but it takes a lot more effort to do so. For people with a dopamine deficiency, moving around, walking etc, takes a lot more energy when medication levels are low than when they are on a higher level.

    Parkinson’s medication come in a few different varieties and these can be combined in a number of ways to achieve the best effect. Very simplified, these varieties are:
    – medication based on levodopa, which, once it reaches the brain, is transformed into dopamine
    – medication that mimic the effects of dopamine
    – medication that inhibits the decomposition of dopamine in two different ways, hence leaving more of this precious chemical to our starving brains

    My cocktail of Parkie-drugs consists of one of each of these four types, carefully combined in a collaboration with my neurologist, with whom I am fortunate enough to have developed true Shared Decision Making.

    The change in medication is a very small change, barely more than a tweak, but I have learnt over the years, that medicating against Parkinson’s is like balancing a very thin line between wanted effects and unwelcome side effects. I also know that the resulting effect of a change will take weeks or even months to stabilise.

    If you want to, you can follow my journey here.

     

  • I need a change, I really need a change

    I have found myself really struggling for quite some time now. Struggling to move smoothly, struggling to stay positive, struggling to keep going. And I have realised that it is time to change things. I need to increase my medication. Of course it is a sign that my Parkinson is progressing and of course that insight is not a pleasant one but I knew that this day would come sooner or later and almost 3 years on the exact same dose must probably be regarded as a long time in Parkinson’s.

    It never ceases to amaze me, the profound effect that dopamine has on me, or rather, the effect a lack of dopamine has.
    The slowness of movement, from the outside probably perceived as me moving in slow-motion and from the inside experienced as every single step requiring an effort of almost ridiculous proportions. The frustration of the mind, not seen from the outside, but from the inside experienced as a storm of thoughts contained in a confined space, stumbling over each other, all trying to find the space they need to develop.
    And then the relief when the medication kicks in, the fantastic feeling spreading through my body, when my muscles can relax properly and work in sync again. The surge of joy through my brain when I don’t have to use 90% of my concentration just to keep going in the intended direction any longer but instead actually can walk and talk simultaneously again (Hmmm…. makes me wonder if the body-builders back in the 80’s all had Parkinson’s…..?).

    I have been lucky enough to have been very well medicated for such a long time that I had in fact almost forgotten this feeling of hopelessness. And I truly hope that I will be able to forget it again soon. Because starting tomorrow, I plan to increase my medication, and I will monitor the effect very closely using a tapping test on my iPhone. I have spent some time collecting base-line data on the effects of my current regimen, see below, and it will be interesting seeing what the effect of the change tomorrow will be.

  • “Is Parkinson’s Contagious?”

    Another recycled blog post, this one was originally written in May 2010.

    The apple of my eye is a 4 ft tall, 45 lbs creature with brown-green eyes and blonde hair, a very strong will and views of her own (I really can’t understand where she got those, I still have mine left…). Her name is Frida, she turned 7 last January and she’s my biggest fan as well as I’m hers. I dread the day she becomes a teenager, considering the clashes of wills that have already taken place while her loving father and my darling hubby tries to avoid ending up with permanent tinnitus from the loud noise. Frida is quick, both in body and mind, she loves to run and climb and she collects things whenever she gets a chance. If I hadn’t given birth to her myself, I’d think she was a squirrel… a  very large one… with no tail…From Frida’s point of view, I have always had Parkinson’s, it’s a natural part of her life, for good and bad. I have never tried to hide anything about it from her, she sees me take my medication and we talk openly about PD at home. No wonder that she has questions at times and wonders about this ”thing” that makes her mother so tired occasionally. One morning when she was about six years old, we were getting ourselves ready to go to daycare and work, respectively, and she suddenly asks me: ”Mummy, is Parkinson’s contagious?”. I stopped what I was doing and realised that today we might be a little bit late, because this was something we had to talk through. I realised that she must have heard about Parkinson’s disease and figured that most diseases are contagious, so could she get Parkinson’s from being around me??? We sat down and had a long talk about what PD is like, how they don’t really know why some people get it and other’s don’t and that clever people all around the world are trying to find a cure. It was one of those moment that I will remember for a very long time.

    About six months later, Frida and me were on our way home from school and out of the blue she says: ”Mummy, I’m so glad you got Parkinson’s!”. I thought: ”f*****g hell, my daughter has completely lost her mind!”, but managed to transform it into a neutral enough: ”Oh, how do you figure that?” ”You see Mummy”, she said, ”if you hadn’t gotten Parkinson’s I wouldn’t be friends with Annika!”. Annika is one of my ”PD-buddies”, she turned 50 last year and she and Frida really like eachother. You can imagine how glad Annika was when I told her what darling Frida had said…

    So, at the end of the day, Parkinson’s is not contagious but it can give you new dear friends to the whole family.