DBS Diary 12: Well, what did you expect?

Much of the talk among the scientific and medical communities centres on expectation management in DBS. What does that mean? I think it means more than anything keeping one’s feet on the ground. It’s very easy to believe when you listen to others who have had DBS that this is a cure. It isn’t and let’s be quite clear on that point. DBS will ameliorate some mainly motor symptoms to a degree that depends on where you are within that window.

Window? Yes, window. DBS is not universally helpful. If you are at too early stage in your Parkinson’s, you may not experience real benefit. If your symptoms are largely minor, you may not derive full value from DBS. Conversely, if your symptoms are well advanced and severe, again there may be too little functionality remaining to be improved by DBS. You need to be somewhere in that window – not too soon, not too late, not too trivial, not too severe. It takes the skill of a talented neurologist to assess your position within this window of opportunity. Some are not even offered DBS and leave the physician’s office fed up. Others are sometimes offered DBS unexpectedly, flapping about like fresh halibut over a choice they had not previously considered.

My initial assessment for DBS took place some while back and I was pleased to be found suitable. Then somebody sneezed in eastern China and the world changed. I’m treading carefully here. Some 150,000 people in this country lost their lives so I am a little wary of complaining here, against that backdrop. But the long and the short of it all is that by the time my number came up, more than a year had been lost to Old Father Time and I was beginning to see that window closing.

This is a bit of a roundabout way of saying that my expectations of the procedure were relatively low. I did not expect to be cured or to experience anything like a cure. Younger friends of mine who had taken the electric journey had spoken of liberation from the daily tyranny of drugs. All very exciting.

But I’m a man in my seventh decade and have learnt that life can be a bit of a disappointment at times. So my expectations were perhaps modest, in many ways mitigating loss rather than emphasising gain. When asked explicitly what my expectations were I must have left the surgeon wondering why I was bothering. I wanted to have less tremor, and a bit more sleep. But top of my wish list was to not lose my voice or slur it to the point of unintelligibility. I rely on voice recognition software to communicate with the world. I hardly ever type anything these days. And reading my handwriting is a challenge of Herculean magnitude. So if the computer cannot understand me I am in a little bit of a pickle. Because I still think I have lots to say. Many of you, particularly my children, may see it differently.

I had the operation a little over three weeks ago. So by now brain swelling will have diminished and the electrodes should be in their allotted locations stimulating away happily. In other words, any effects I see now should be representative of the general pattern. I should add at this point that we are using stimulations that amount to less than 20% of the total deliverable current.

So first things first. Does the computer still understand me? The answer is a strong affirmative and one which has largely caught me by surprise. Since coming out of hospital my speech has been clear and unambiguous. Not only that but the volume has been higher. Friends briefed to expect a slurred stumbling Jon have largely found the opposite. Most have commented favourably on the clarity of my speech compared with the mumbling that passed for speech in my pre-DBS days. Loud and clear is now the order of the day! Victory for the electricity.

What else? Sleep – I have now been home from the hospital for 16 days, sufficient duration to begin to draw some conclusions about the effect of DBS on sleep. This too has surprised me. As those who have read this column over the last few years are aware, I sleep very poorly, scraping together fragments of sleep where I can. Not now. I’m reluctant rather to talk about it for fear of jinxing its salutary effects. But nonetheless I seem to be sleeping at least an hour a night longer than I have previously. Even when broken I find it easy to go back to sleep. For insomniacs like myself this is uncharted water. And I love it. Two out of two for those happy little electrons.

Tremor? I’m saving the best till last. Picture the scene – I covered it in my first ever book about living with PD (“Slice of Life”) – . Grated Parmesan. Give me 30 seconds and I can turn a plate of spaghetti into a winter nativity scene. A bowl of soup becomes The Poseidon Adventure. And so on. Holding a teacup has the floor awash with Darjeeling within a second or two.

Not any more. My hands are rocksteady. I would probably even pass a lie detector test this. They move when I command them but not otherwise. And this means more than simply targeting an espresso to one’s mouth instead of face. I know tremor will one day return at some point long in the future I hope but for the moment I’m happy to wish it bon voyage. This newfound stability has of course robbed me of one of my little party tricks but this is a small price to pay.

Teacups are just part of it. If my hands are steady, I can read a book. And if I can read a book, I can read articles, commentaries, even my own books (and I’m ashamed to say that I do sometimes do exactly that). It has been more than five years since I was last able to hold reading matter steady enough that I could make sense of it. That’s a long time. I have so much catching up to do.

It’s not just reading. One of my passions is photography. For many years I have taken blurred, distorted images, like ghosts in the mist. Even compromising with laughable film speeds, clumsy camera grips, releases and tripods, the results have been pitiful. But not any more. My new steady hands are probably, and here’s the funny bit, better than they were before I was diagnosed. Of course, now that I can take crystal-clear, razor-sharp photographs I’m beginning to miss the misty ghosts. And there’s no excuse now. People used to make allowances for my rubbish photographs. Now there is no hiding. The whole world will know that I am crap at photography.

If we are talking still about expectation management, how can I fail to be happy. I said, going in, that these were what I hoped for. And I feel that the Christmas fairy has granted all three of my Christmas wishes.

DBS Diary 11: The day of surgery

Okay, this is out of sequence but I thought I would tell you roughly what I remember of the surgery for DBS. I don’t know whether you will find this reassuring or unsettling so I will throw in the usual scattering of caveats – if you don’t want to know the score look away now.

We are four in the ward. Adjacent to me is Mark, who has Multiple Sclerosis incidentally but, more specifically, has had a brain tumour removed. A gentle mild man with kindness and generosity of spirit where you might have expected him to rail against the injustice of life. A model patient. Not surprisingly the physiotherapists love him. Whatever they ask of him, he does. Determined to make progress and almost infinitely courageous. I salute him. Diagonally opposite me is Terry. An engineer by training, he has had DBS surgery exactly a week before me. I watch him closely for signs of improvement – a bit like skipping ahead in a novel. Lastly there is Joshua, a Nigerian with a tendency to grumpiness. When I discover that he has a spinal tumour which gives him almost constant pain, I try to be a little more accommodating. It turns out that he is also a painter (artist not decorator) and has painted some very stylish African scenes. Nor is he the only artist amongst us. Terry is a wood turner and makes beautiful bowls from maple, pear, ash. I make a mental note to speak to him in more detail. [I have since purchased a rather beautiful 18″ bowl in maple].

Surgery day begins at midnight when they withdraw all fluids. Not a major hardship except for the fact that hospital wards are, in my experience, rather overheated so your lips tend to dry out I am told. Speaking as someone whose skincare regime is, to say the least, cursory, I am unaccustomed to applying lip balms and so on.

I sleep poorly anyway and obviously the anxiety of impending surgery contributes to that. I finally fall asleep around four only to be woken by one of the nurses trying unsuccessfully to insert me into a pair of flight stockings. At some 84 kg (me not her), this is never going to happen. She summons Kingsley, a strong Kenyan this who completes the task with a flourish. I head to the shower to complete my ablutions, consisting of Hibiscrub top to bottom. Literally.

I can see the tagline – “Hibiscrub, because I’m worth it”.

A little after 8 o’clock the porter arrives to take me down for my operation. He chats briefly with the ward staff, even going so far as explaining the minutiae of my upcoming procedure. He seems very knowledgeable about modern neurosurgical practice. It finally dawns on me that he is not a porter but, in fact, the professor of neurosurgery. “Yes” says one of his registrars “he likes to pretend”.

In a strange sort of way it is reassuring. We chat at ease for several minutes. It turns out that he trained with Prof Peter Richardson who had the office four doors along from me when I worked in the anaesthetics department at “the London”. Small world. For those who would like to meet him, this is my neurosurgeon, doing a TED talk.


For those of you unfamiliar with a neurosurgical operating theatre (and I hope that’s most of you), the first thing that impresses you is the sheer number of people. About as many as would crew a Flying Fortress. It’s all bustle. I seem to remember around ten people busying themselves with pre-flight checks so to speak.

Brief introductions – I will never remember their names – and smiles. “I will just get into my pyjamas and we’ll get going” says Prof Z. Funny, I use theatre scrubs as pyjamas at home too.

It is one of the most dislocating aspects of general anaesthesia that one has no sense of the passage of time. I remember the anaesthetist implanting an arterial line because “Parkinson’s patients have autonomic instability and notoriously variable blood pressure”. My next recollection is of a nurse gently whispering sweet nothings to me in recovery. I reach up to my head and feel hair rather than stitches. Obviously they have shelved the procedure because of some as yet undisclosed problem. They have not even shaved me.

The nurse tells me sharply to leave the staples alone. I am confused. No time has passed yet the clock in theatre shows 4 PM. I have lost some eight hours along the way.

A porter takes me back to the ward. Evidently Prof Z has come through his career crisis and decided he prefers to be a neurosurgeon after all.

I remember making some feeble efforts to telephone the family but cannot even remember how to unlock the phone, so groggy am I. I probably make no sense at all… Don’t say it!

Just then the dinner trolley arrives. I struggle to remember what I have requested. Not that it would have mattered. Hospitals are not known for their catering and one beige slurry is much the same as any other. Many believe that hospital catering is there to discourage long-term bed occupancy. And in that role, it performs admirably.

By Friday I am much improved. As are my other fellow inmates. Sorry, patients. In one fell swoop, they are all discharged leaving me alone over the weekend.

This turns out to be one of the stranger experiences – a little like being in a holiday camp out of season. My table is piled high with newspapers and magazines. The Observer, the Guardian, the daily Mirror, and others. More reading than I can possibly need. Their choice of reading matter seems pointed. Time Out (particularly ironic since I cannot spend any time out, National Geographic Traveler (as if they hadn’t made their point already) and finally Countryside magazine (all of which is beginning to look deliberate).

Queen Square is deserted at the weekend. The usual bustle of taxis and ambulances is quiet. Like a ghost town. Obviously I failed to notice the zombie apocalypse.

By Monday I have negotiated my parole (sorry I mean discharge) and I am released into the tender mercies of Joe, the taxi driver to take me home. A man of few words but a penchant for speed and evidently in the process of making what appears to be an attempt on the world land speed record for a Mondeo. And to think that I was afraid of the surgery!