Parkinality: Back to hospital for tests to gauge the success of my deep brain stimulation surgery

I never imagined I would be asked to do a drink-drive test. Not because I am teetotal – I still enjoy the odd social sherbet (both the dib dab and wine type). The reason is because I no longer drive, having given up my licence around five years ago.

So, when I was asked to perform physical tests such as walking in a straight line, performing a sit-to-stand action and what I affectionately call the ‘tweety bird’ test – moving my thumb and finger as if they were a puppet – these definitely weren’t because I was driving under the influence. They were to test the success of my DBS (deep brain stimulation) surgery.

These tests might lead some to think that Parkinson’s disease (PD) is a physical condition. However, when I can't perform a star jump or my muscles contort and twist, there is nothing wrong with my body. It is the communication between my brain and muscles which gets confused and lost. This is due to lack of dopamine in my brain.

Dopamine is responsible for transporting the messages originating in the brain to the muscles to move. If the message to skip doesn’t arrive in the legs then my legs won’t get the message to move and I will remain stationary. If the message to smile doesn’t reach my face, I will look grumpy. If you see me cross and standing still, then inside I might be trying desperately to wink at you whilst performing star jumps.

Regular readers will remember my column about my pre-DBS surgery visit to hospital, unmedicated, to test my suitability for brain surgery. On that awful day I had to deny myself my essential medication, having gradually weaned myself off in the days before.

Last year, in the neurology waiting room, without the restrictions of the tablets, PD had a field day. My body was both rigid and writhing. I was both gurning and slurring. All the time I had my headphones in as I tried to sing to distract myself. I must have been quite a sight.

This ‘thing’ has taught me a lot, from how to walk backwards in a crowd to never judging a book by its cover. I was like a horror novel on the outside and more like a heart-tugging tearjerker on the inside.

So what happened this time? Again, I went to hospital unmedicated. However, unlike last time, the brain electrodes were working in the background. While I reduced my medication, I gradually turned up my DBS handset settings (which operate my brain electrodes, stimulating dopamine production).

Now, don't get me wrong, my movements were by no means perfect – I was still ‘me with PD’. The difference was I was no longer ‘me with PD plus severe side effects’. I managed to perform all of the tests to the best of my ability. This was an improvement from last time, when I wasn’t asked to perform some of the tests as it was deemed too dangerous. Like last time, I was videoed. Unlike last time, however, they didn’t need to utilise the bleeper machine as I managed to restrain my use of expletives.

So what does this mean for the future? I still have PD, there is still no cure. I still struggle with my walking, anxiety, slow movements, speech, writing and many other symptoms. I still need to rely on medication, but now, in conjunction with the machine, I can hopefully reduce the debilitating side effects as long as possible (although they will return when I have to increase my medication as PD continues to deteriorate).

Friends who are thinking ‘Phew, I'll no longer keep them waiting’ will be disappointed. Your expectations should remain low and you should still be prepared to take a book when meeting me for coffee, or to have the arrangements changed at short notice. I will still be unreliable and unpredictable.

I will end on some good news. Drum roll please… I have been presented with the Parkinson's UK Community Award entitled “Get Creative, Be Creative”. I have a certificate and a golden brain (not a real one) badge. You may whoop discreetly.