DBS Diary 13 – 6 month update

Well, not six months exactly. More like five months and 22 days but let’s not split hairs.. Let’s get to the meat in the sandwich. What has changed since my last report? On the whole not very much.. Although I am delighted (honestly) with the results, there is still no doubt to my mind that better still can be achieved. In part this is due to the stimulating location and range of the Boston Scientific DBS system this I received at the beginning of November last year.

Okay so let’s break down the results a little bit. There is no doubt the biggest pluses are attributable to a substantial reduction in tremor. I can now read words on a page where previously I struggled with words at all. The surtitles of the opera house are now once more visible in all their sacrificial and, in the case of opera, often comical, appearance. I can hold a book steady enough to read and not be surprised by the appearance of new and previously unknown characters towards the end. I can now follow the plot. I can hold a camera with sure and steady hand, and the eye of a marksman. I said to my neurologist, a good friend and exceptional scientist, in October, that a steady hand alone would justify the surgery in my mind, that I would settle for that alone.

My right hand has remained steady since. The left hand has a slight tremor and that has perhaps increased a little over the last six months but not enough to detract from my rock steady right. This tiny deterioration may simply be progression of the primary neurodegeneration itself (it is a neurodegenerative illness – remember?) quietly picking off cells in the background like a sniper.

These are the positives. And they are very positive.

But there are negatives and it would be wrong of me to infer that all in the garden is rosy. My motor symptoms have not really improved at all. I still struggle with my walking, bent over much of the time like a question mark when I wanted to be an exclamation mark. This has been surprising enough that, were it not for my rocksteady right hand, I would doubt whether the procedure had done anything. That and the persistent inability to reduce my drug load has been surprising. I had expected greater motor improvement and lower drug levels. These observations will form the basis of my next consultation meeting.

It is important to keep a level head with Parkinson’s and with DBS in particular. People expect miracles and, if they enter the process (and it is a process) with inappropriately high expectations, they will be disappointed. DBS is not a cure. DBS is another tool in the neurosurgical armament, another choice on offer. And DBS as we know it today is a world removed from the DBS of two decades ago. Those almost blundering efforts were in every sense a stab in the dark. Modern DBS, coupled with precise neuroimaging is less of a wing and prayer. The surgeons themselves are artists not artisans. Perimillenial DBS is to its modern counterpart as Cro-Magnon cave paintings are to the Sistine chapel roof. The science has changed that much.

My neurologist told me that it would be an iterative process of changes in the stimulation parameters. We should not expect it to be perfect first time. And I have no problem with that. So, when I see my neurologist I shall update him on the successes of the DBS and we will sit down together to work on those motor symptoms.

Perhaps after I have handed over a bottle of Bollinger…