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.

PD Quantified Challenge – end of day 3

Results from my first day of evaluating myself can be found in the graph below and the next one shows my control (a.k.a. hubby). I found the patterns over time, especially in the finger tapping fascinating. If the results from the first day are anything to go by, the dose-response curve of my medication is VERT distinct with a clear lag.

The PD challenge, day 3 – add an app or two

Hmmm… I have realized that the Wii balance exercise/monitoring doesn’t give me quite the information I need relating to fine movements and the Nintendo Wii is also difficult to bring to work.

So, I have decided to add some new tests: I found two apps on the app store that looks promising: FastFingers (a tapping test where you’re supposed to tap as many times as possible for 30 seconds) and ReactionTest (measuring your reaction time). I have taken the test series (FastFingers once for each hand and ReactionTime 5 times for each hand), making sure to attempt to performing the tests in the same way every time. I took the test late last night when I was running low on medication, once early this morning when I had just taken my first dose and once 30 minutes later. I have also registered a control: my darling husband. The results look interesting and can be found on the tab “Reaction and tapping” here. I will take the test once more now and then several times during the day. Watch this space!

PD-Wii Fit Plus Challenge – day 2

Day 2 of my challenge and I realized that the registering of the results has to be altered slightly: I will register the Wii Fit Age and Centre of Gravity (COG) before and after the exercises I perform. The difference today was surprisingly large, check the table here. I would guess that the balance game I played today (Table Tilt), gave me the external feedback I needed to “recalibrate” my balance.

My PD-Wii Fit Plus Challenge

Today I am starting a new project: My PD-Wii Fit Plus Challenge. The idea is to investigate if a few minutes on the Wii Balance Board in the morning can affect the impact PD (Parkinson’s Disease) has on my life. I will attempt to jump onto the balance board every morning and perform a body test and preferably a few exercises as well. I will register my Wii Fit Age, BMI and scores in the exercises here and hopefully some sort of effect will be apparent, we shall see.

Let Sara’s PD-Wii Fit Plus Challenge begin!