This week I spent two days in hospital being assessed for Deep Brain Stimulation (DBS) surgery. The first day involved psychological assessment and the second day observations and videoing of my condition when I am off and on my medication. The purpose was to ensure that my symptoms would respond to surgery and that I was not losing my marbles, which would make the operation financially unviable.
There were around 20 psychological tests which assessed my cognition; mental speed, memory, execution skills and creativity. There were pages and pages of pattern sequences to recognise, numerical exercises involving repeating number sequences forwards, backwards and in numerical order. Recalling a story was fine until you had to do it again after several other intervening tests. It was mind-boggling and by the end I was shattered.
Afterwards I went to the ward where I would spend the next day being assessed physically. I stopped taking my pills at 8 pm that evening and did not retake them until 11 am the next morning. That intervening period was horrendous as the pain and the stiffness became progressively worse and my legs felt like lead. Bleeping monitors and alarms also made sleeping virtually impossible.
By 10 am the next morning I was looking like death, feeling frail, dribbling unattractively and my tremor was in top gear. The Parkinson’s nurse and assistant came to assess my condition and to give scores for both my left and right sides in each task. Writing, drawing and manipulating items were all severely impaired and my performance, predictably poor. It was only with great difficulty I was able to get out of a chair and only with the help of a walking frame could I shuffle along a metre or so. It was shocking to think how dependent on my medication I had become and how feeble I was without it.
Finally, I was allowed to have my medication and it was a great relief to be able to stand up on my own to walk across the ward and to go to the bathroom independently. During that day I talked to other members on the neurological ward who had undergone awkward surgical operations to remove brain tumours and for them the outcome of surgery was uncertain; it was then that I felt relatively lucky,
The Parkinson’s nurse and assistant returned at 2 pm when I was fully functional and reworked their assessment sheets for me at my best in the “on” state. Many of the tasks I achieved in half the time. This was important because suitability for the operation requires a marked response to medication. In other words, there was a great contrast in my condition when I was “on” and “off”.
I now await their decision as to whether I am suitable for DBS. My neurological consultant offered me this option six months ago and I would never have considered it previously but began to realise that I could not continue simply taking more and more Parkinson’s medication because the side-effects of L-Dopa become progressively debilitating as time goes on.
The benefits of DBS for me are likely to be a reduction in the number and length of “off” times, so that most of the time I will feel as I do at my best now. My symptoms will be less intense and so will my medication. This means less dyskinesia. The operation itself might deter some because it is done without anaesthetic and involves drilling two holes in my skull to introduce electrodes which will generate neural activity when switched on by a pacemaker embedded in my chest.
After 14 years I have had to acknowledge that my condition had got significantly worse and would continue to do so. DBS is not a cure but a way of reducing the impact of the disease and improving my quality of life. I look forward to playing with my grandson, travelling independently, having breakfast with my husband, getting in and out of bed unaided, undoing buttons and putting on mascara without ending up looking like a panda.
It is quite realistic to expect to achieve much of this with surgery and these benefits outweigh the risks involved.
I wait and hope.
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