In general, I don’t know very many proper “writers” within the compass of Parkinson’s. Among my own circle I would list Leslie Davidson (obviously), Pete Langman (ditto) and Heather Kennedy (obviously if you know how we both work). There are others but these are the three whose work I read most regularly. And these are the three whose craft most significantly impinges upon mine, such as it is. I have talked intermittently but often with all about the concept of a writer’s “voice”, our own USP if you will and how it changes over time. Or doesn’t.

Some years back I switched from typing my work to dictating it. In large part this decision was taken for me by my progressive decline in dexterity, and consequent increase in the number of typos. What previously had been relatively fluent typing, albeit using only the index fingers of each hand, had begun to deteriorate to the point where I spent as much time correcting as writing. At around the same time, it became apparent to me that speech recognition software had finally reached a point where it was a serviceable alternative to typing. So I made the switch. And after a few simple exercises, essentially reading passages from known texts for half an hour or so, the software became attuned to my way of speaking, my pronunciation and the meter of my speech.

I spoke, it wrote.

But did it materially alter the style of my writing (leaving aside the question of whether it can even be called writing if it is simply the recording and transduction of speech)? I would argue that it did not, simply on the grounds that no reader has ever successfully identified the point where I shifted from one form of verbal input to another. Not one single person has told me correctly when that occurred.

This is flattering. Whatever flutter of wings or flicker of light is caught in my writing, is not noticeably impaired by reading. My writing is robust and determined by what goes on in my head rather than my fingers or larynx. In essence my ‘writer’s voice’ is located entirely within my mind and not my hands. This may seem obvious, but for me, with a relatively wordy and free-flowing style, this is very satisfying. I would hate to think that the style was conditioned by the means of its transfer to paper.

This probably doesn’t matter one jot to most of you but writers get bothered about this sort of thing.

As I said, nobody spotted when I started using my speech software. Indeed those very few who had an inkling, often say that any perceived or imagined style change is for the better, a less staccato and more cantabile format. The greatest compliment people pay me is to say that they can hear me in the writing, that in essence they imagine me reading to them. I find that on the one hand very generous praise and, on the other hand, an intimation that writing is somehow little more than chat. I know that Pete, Leslie and Heather would disagree.

Let me change tack for a moment. Bear with me, this will make sense.

Every year, around December, I have an appointment with my speech therapist. The pattern is always the same. We chat for a little while, she takes decibel measurements and then tells me that I’m wasting her time. Then we chat some more, about our children as often as not, before making another appointment a year hence.

I take great pleasure each year in being pronounced a waste of time. Because being a waste of time means that my voice has not deteriorated in the intervening 12 months.

This is of more than idle interest. Many people with Parkinson’s have vocal problems of one form or another. Some stutter. Some can sing but cannot speak. Some have voices barely audible over the background hubbub. Some slur, some whisper. Hardly any shout, or can shout. Some have difficulty with certain words or sibilances. Some trip over one word but not another. Some cannot separate syllable multiples. If you are a neurologist or a speech therapist, the average Parkie will keep you occupied with a rich vein of symptoms.

I mention all this because recent events lead me to conclude that my voice – my physical voice – is changing and that in turn is altering my voice – my writer’s voice. It’s nothing major and, to others battling far worse consequences of their Parkinson’s, may seem trivial. But three things, in conjunction, lead me to this conclusion.

Firstly, and I’ve noticed this over the last few months, I am often asked to repeat myself. This suggests that my voice is either weaker or less precise. As I said, nothing major. No catastrophic decrease in volume or clarity, just a few subtle differences which mark the boundary between comprehension and misunderstanding.

Secondly, Alexa keeps playing the wrong music. I ask it to play, say, “Big Log” by Robert Plant and it will offer me a medley of music for the Paraguayan nose flute. Or a request for the second movement of Brahms’s third Symphony will be turned down in favour of the International Scout movement playing Cumbaya on recorders and kazoos. I’m all for open-mindedness in music but there is a limit to how much of this I can take.

Thirdly, and perhaps most significantly of all, the very speech recognition software I’m using to dictate this is beginning to mishear (or misinterpret) me. This is particularly disquieting since I’ve already had to forego typing, except on rare days when the meds seem to work according to plan.

On its own, these changes are dispiriting. For two reasons. Firstly, there is a serious chance that my speech therapist will begin to take an interest rather than simply tell me I’m a waste of time. That itself will mark a significant point of transition. But my biggest concern relates to Deep Brain Stimulation. I’m on a list to be considered for DBS at the moment. There is inevitably a significant waiting list so there is unlikely to be precipitous action taken. But one of my concerns relates to speech. DBS is excellent for treating tremor, perhaps my most debilitating symptom, but it does so at a price. And that price is often impairment of speech to some degree, especially when the electrodes are targeted on the subthalamic nucleus rather than the globus pallidus, as is the current fashion. In some people it is barely noticeable whereas in others the disruption can be quite severe, rendering the normally well understood nigh on incomprehensible.

That would be the supreme irony – that DBS takes away my spoken “voice” but improves my tremor to the extent that I could type again, in essence giving me back my typed “voice”.

Five hours of complex neurosurgery to achieve that – oh how I would laugh.

Losing my ‘voice’