Before anyone even gets close to being considered for DBS, there are a series of assessments aimed at figuring out whether you are likely to benefit from it.
One of the most daunting of those assessments is what’s commonly called “the dopamine test” or levodopa challenge — though technically it’s more like an “on/off medication assessment.” I was actually more worried about this dopamine test than the idea of having brain surgery!
Going “Off”: the test process
The test is conducted by the Movement Disorder Specialist nursing team, who video you as you do a series of movements. This video is later analysed against the MDS-UPDRS rating scale (an assessment tool used to evaluate disease severity and progression) while you are in the “off” state. You are then given a slightly higher dose than your usual Parkinson’s medication, and once you reach an “on” state, the video recording and rating scale are repeated.
There were surprises for me throughout the process. Here are my top 5.
1) Surprise! You can move!
The biggest surprise for me was I could walk! I had honestly thought I would be frozen and rigid and unable to move at all. So walking the 1km from the accommodation to the hospital felt like an enormous achievement.
Yes – I needed the walker, and a push from behind courtesy of my partner on the one wee hill we had to go up. But I could move, and actually I think walking helped to ease the aching rigidity in my lower legs.
2) Balance not affected
The second most surprising thing was my balance was very similar both in the off non-medicated state, and in the on with medication state. The balance test involved the nurse standing behind you and pulling you sharply off balance.
They try to do it unexpectedly so you won’t be prepared for it, but they have to demonstrate it first before they video you doing it as the actual test, so I feel like I wasn’t completely surprised by it. And it did make me feel better about DBS and balance – one of the warnings they gave at the beginning of the process was that DBS has been known to worse some people’s balance. I am hopeful my balance was good because I’ve been training it. Which would mean that if I have post surgery worsening of it, it can be improved again through more training.
3) Foot and hand movements were strangely hard
As part of the assessment of your movement of both on and off the medication you have to perform an odd series of hand and foot tapping, drawn from the MDS-UPDRS assessment scale. I found these incredibly challenging. Particularly tapping my feet on the floor. That was like lifting huge weights. Very difficult. Although not sure the actual application of these in life, so not really a huge concern for me!
4) I knew I couldn’t draw but poor handwriting was a blow
The level of rigidity in my arms was quite surprising. I’m used to it in my lower legs and feet, but hadn’t yet noticed my hands and arms being rigid. During the rigidity test my forearms were noticeably stiff and unresponsive. Then I had trouble with writing, which I don’t normally get but have had in the past. I had to handwrite two sentences – after the medication was given to me and had started to work. I could think what to write but my handwriting was hard to read. Not the worst its ever been in the past, but not as good as I was expecting it to look. And being asked to draw – well that was just cruel.
5) Long recovery
The recovery has taken weeks. Although it only took half an hour for the medication to work during the test, following on from that day I’ve experience a lot of really long and bad off-periods. It took weeks to get better enough to make it back to karate training, and I started to feel the weight of my years of Parkinson’s. This is the on-off cycle of doom that I had worked so hard to be rid of. Neurologists call it “motor fluctuations’. Eye roll.
To that was the challenge – what are your thoughts, comments or question?
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