DBS Diary 03: more questions than answers. Fundamentally I had made my decision upon leaving the hospital after the meeting. I would go ahead with DBS. There really isn’t much else in the way of choice. Yes it could all go horribly wrong but the likelihood of that is very low. Yes it could abolish my tremor and help make me less stiff and more mobile. The likelihood of that, by comparison, is very high. And so on. In simple terms I’m balancing the high likelihood of major physiological improvement against the low probability that I could have a stroke or die on the operating table. It’s a numbers game, nothing more more nor less, with a very wide range of potential outcomes, mostly good. I don’t plan to dwell on the extremely bad outcome scenarios mainly because I have little to say of them. And in the case of the worst possible outcome, obviously I will have nothing to say. But I will be in the hands of men and women who do this every day. I am as comfortable with my decisions as I hope they are with their incisions.
Of course I should have done this first but, over the course of the last seven days, I have been speaking to many of those who have had DBS previously and their stories are illuminating. Not universal certainly, but personal and therefore all the more valid. Some have been reticent, others vocal and in the vast majority of cases, their information has been helpful in making my decision (neglecting for one moment that I had already made the decision). I tried as much as possible to get a random sample of the experience of DBS. I didn’t simply pick the zealots or doomsayers. In the end I think I got a good range of opinion from DAJ, DS, CHH, BC, BL, DP, VA, RB, BS, HK and BT. Among others. Apart from one or two who had a handful of what might best be described as cold feet or post-operative misgivings, the response was universally positive.
To be honest, I was a little sceptical initially. It felt as though they were all reading from the same script, all coerced into speaking the same lines. And were these people I did not know that view might have persisted. But these are all friends, fellow Samurai on the same path of enlightenment. Their views left me wondering what might have happened if I had summoned up the same courage say five years ago.
It’s academic of course. Five years ago I was at a different point on my Parkinson’s trajectory, a more positive point with sunlit scenery. Five years later, there are clouds in the sky and the feeling of rain on the horizon. So it’s impossible to compare directly. Five years ago I did not feel I needed DBS. I felt the drugs could manage the condition. Five years on, I don’t feel the drugs are doing the job. So it’s time for DBS.
When I say time, I do mean actual chronological time. DBS works best in patients who get a good response from the drugs. It is less successful later in the treatment sequence. Put simply, if the drugs aren’t working, don’t expect as much from DBS either. Five years ago I wasn’t ready for DBS. Now I am at that point of acceptance. The irony is that, had I been ready to accept it five years ago, I would have had a better response in all probability. Catch-22.
But what determines readiness? I’m ready, or at least I believe I’m ready now. And I base that on a number of factors. Parkinson’s is a neurodegenerative disease. In other words I’m getting worse. Today was not as good a day as yesterday. Tomorrow will not be as good as today. And so on. Neurodegeneration focuses the mind somewhat. Rather like those people come to the door offering double glazing at a spectacular discount but only if you sign up on the spot. That’s neurodegeneration. So, in a manner of speaking, my brain is coercing me into reluctant surgery. But surely, it’s still the same ‘me’ making the decision whether it be today or five years ago. Well, actually no. It isn’t. Because today me is taking rather more in the way of mind altering drugs (prescription I mean) than five years ago. So now my decision is being forced by a drug crazed double glazing salesman of a brain. Not surprisingly, my mind is bullied into submission. I choose the DBS. What else can I do?