Blog and be damned!

Today’s blog is about, well, blogs. When I say blog, I am referring in this context at least to Parkinson’s related blogs. My own blog ( could I suppose broadly be considered a Parkinson’s blog in the sense that its origins lie there even if it’s present format has somewhat drifted from its origins. But in the sense that it also distils my ethos about Parkinson’s, albeit infrequently, it should probably be considered within the broad envelope of this discussion.

I should also say that although I may refer to other bloggers and their approaches to blogging, I will not generally name names. This is not for any fear of lawyers (liticophobia?) but a desire not to needlessly hurt their feelings. Without also sinking into the mire of woke consciousness, be aware that I may also change their gender if I feel their identity is still too obvious.

I asked my eldest the other day about when I had started blogging. “Roundabout the late Cretaceous period” was her response. Evidently I am a true dinosaur. This will come as no surprise to anyone who knows me well. But after a little bit of verbal jousting, we agreed it was around about 2010. Having been diagnosed in 2006, I had some four years of experience to draw upon. And draw upon it I did, originally in a blog on the Wobbly Williams website, moving in the following year I think to my own free website and then later still on to a proper grown-up website where I could throw in all sorts of other dimensions – music, photography, video, blah blah blah.

Why did I start a blog? Well, it was largely the result of facing a very persuasive Bryn Williams, he being of a  wobbly nature (oh gosh I didn’t really disguise his identity did I?). Bryn is of course a lawyer and, by nature, extremely persuasive. After a brief session talking to him or, in actual fact, submitting to his hyperbole and flattery of my writing skills, I was persuaded that the world needed to hear from me. I don’t suppose for one second that it actually did but it was fun while it lasted. And Bryn has always been a beacon for many in the Parkinson world (am I returning the flattery here? It looks like it doesn’t it).

At first I simply wrote about my day-to-day experiences and how Parkinson’s had pulled the rug from under them. After a while I began to receive emails and letters even from people who generally said they enjoyed reading my thoughts and admired the positivity. I was seen in some ways as making light of the condition, and not submitting willingly to its many vicissitudes. And I think also because my background was science, specifically neuroscience and most specifically Parkinson’s, I was perhaps seen as a “go to” person if you wanted a bit of science scattered around your symptoms.

Even the most cursory examination of the blogosphere reveals the many different styles, objectives and execution. One, by a friend in Hungary let’s say, is irrepressibly optimistic, finding laughter and humour in the most insane moments. Another is a devout believer in the church of laughter, happy to cite scientific research that “proves” laughter, even the very physical act of laughing, is enough to alleviate dyskinesias. I can’t help feeling it’s not that simple. Rats don’t laugh much and they don’t get Parkinson’s. Hyenas might be a better model. Especially so for scientists with a death wish. My feeling is that hyenas would be Benny Hill fans rather than appreciating more Pythonesque humour. But laughter is just an exemplar. We all have something, some little trick of the light that benefits us and us alone. This of course is the “n of 1” trial approach. But that’s another subject for another day, beyond the scope of this blog.

Leaving aside the scientific tonality or otherwise of each blog, the principal differentiator is positivity or negativity. What is appropriate?

This is the elephant in the room and, in many ways, also the conundrum with which we wrestle daily. We need money for research into treatments for Parkinson’s. That’s obvious. It’s also obvious that we will raise much more money if we portray the condition at its most horrible, crippling and gruesome.

At the same time, we are keen, as a community, and especially for the management of newbies, to convey the message that you can live with this condition and live a fulfilling life. perhaps not your pre-diagnosis definition of “fulfilling” but nonetheless worthwhile. How do we protect them whilst flipping the coin over reveals a much uglier head. I’ve been blogging for a dozen years and still haven’t found the answer to that one. Answers on a postcard please.

I have a good friend in Andorra (could be, although the odds are against it) who is a Whack-a-Mole champion in his country. He is a strong advocate for single sport activity as a means of ensuring good long-term outcomes. Specifically Whack-a-Mole .

A couple of years back the inspirational Norwegian filmmaker Anders Leines and I made a short series of small videos about subjects we felt were difficult to tackle and poorly addressed by our physicians. Poorly explained by them and poorly understood by us. Essentially the direct result of embarrassment on both parties I suspect. We called this series The Dark Side of Parkinson’s. We opened up a message board. The messages we received were very largely positive towards the videos in the sense that we had apparently burst a dam, along the lines of “I’m not the only one then who suffers from this” and “now I feel I can discuss it with my doctor.”

We agonised over whether we should publish or withhold the videos. Would they do more harm than good? Were they balanced? In the end, we had to make a very stark choice. We chose to publish, with each video carrying a reference where further information could be sought.

The responses, as I said, were extremely positive about content. That’s not to say that support was universal. There were certainly some who felt we had done a disservice to the community. I don’t agree necessarily but I do certainly endorse their right to an opinion on the matter.

I probably take, especially these days, what I would consider to be a more realistic appraisal although I happily concede that my “realistic” may map very closely to someone else’s “pessimistic”. My own feeling is that it is easier to justify blind optimism than more downbeat tones. We don’t seem to have to justify happiness as much as despondency.

And there is of course also the issue of readability. From my own experience, although I vouch for the gritty realism of my own approach, I still find that persistently negative blogs do not, unless very well written (such as that by a fellow academic with connections to the low countries) hold my attention.

If I had to summarise, I have reservations about relentless positivity, like a rictus smile. It just doesn’t ring true and obviously even less so as time passes. It takes a very particular skillset to maintain such a façade. The most positive blogs are typically written by patients within the first few years of diagnosis, that phoney war where the drugs seem to work and we delude ourselves that we are somehow different and we can handle it.


The progression of Parkinson’s is hard to arrest and even harder to reverse. Painting rosy pictures of Parkinson’s patients playing racket sports and the like does not help. In fact I feel that setting impossible standards is counter-productive. It can induce a sense of failure. Very few Parkies can run marathons, swim triathlons and so on. Mostly we shuffle to the shops. It is difficult to achieve the right tone in such blogs. Achievement creates respect up to a point. Beyond that point it starts to reek of triumphalism, simultaneously crashing the spirit. For the most part I’m sure it’s unintentional and has been one or two heroes, making their handicaps a source of inspiration. But for others it’s the desperation such efforts can invoke that worries me.

Dismiss it if you will. I am no athlete and you could legitimately decry my observations as the ramblings of a sofa dweller. Perhaps you’re right and my more balanced appraisal (read pessimistic if you wish) is the one to avoid. Patients will work things out for themselves in the fullness of time. Some need more help than others. For some patients, a sharp dose of reality will derail the train. . But in the end the journey will always have rocky elements and it will be hard to hold the line if you don’t have the mental resources to do so. Listen to fellow patients, absorb their experience and prepare your own to help you best equip for the journey. Engage with your Parkinson’s because, as sure as night follows day, it is going to engage with you.

My own feeling, and perhaps it’s the scientist in me still, is that the greater breadth of information available to the patient facilitates more poised and reasoned decision making during the course of the illness. And yes, there will be a lot of that. Decisions, that is.

Start making them now.

DBS Diary 02: Rolling the dice

Yesterday was the big day. Well, technically, one of a number of big days. But, in this case, the day upon which all other days rest. The day I met the hospital’s multidisciplinary DBS team and they had a chance to meet me. Four of them, two of us (my younger daughter came to assist) and a nominal three quarters of an hour to answer some pretty big questions. Put like that it begins to look like speed dating. Except for the fact that several of them wanted to stick electrodes in my brain. Not there and then you understand but at some point.

I was expecting a sales pitch in essence. I was expecting to be bowled over by hyperbole and misplaced enthusiasm. I could not have been more wrong. We talked about realistic expectations, about side-effects, about benefits and so on. And all in the most sober down-to-earth manner. They did not try to “sell” me on the idea of DBS. Throughout the consultation they emphasised that it was my decision and mine alone whether to go ahead but that, in their view, I met the criteria for DBS. The ball was in my court.

But the thing that impressed me most was their willingness to bandy numbers with me. Now, as you know, I am a grizzled old neuroscientist, strong on statistics, light on fluffy feelings. Like so many scientists, I am unmoved by “very rare” or “relatively common” or “in a proportion of cases”. One man’s “very rare” is another man’s “not at all” or “rare but not unknown”. It reminds you the old Woody Allen joke about the man and his wife separately seeing their shrink and answering the question “how often do you have sex?” with “hardly at all – maybe three times a week” and “constantly – maybe three times a week”. Well it made me laugh. But my point is that descriptors provide nuance but not detail.

Start using numbers and it’s a different matter. The moment you start saying “one in 30”, “62%” and “11/19”, you have my undivided attention. I understand numbers. Numbers are the language of science. My PhD supervisor and good friend Zyg had a very simple maxim – “if you can’t describe it in numbers, it’s not science”. Although I might quibble over the minor details, it nonetheless carries weight as a general rule. And so it was yesterday. They spoke to me in numbers, instantly setting me at ease.

In the end, DBS surgery inevitably presents risks. They explained them to me in numbers – my likelihood of dying, of being seriously damaged, of minor complications, and all the perioperative niggles. And they gave me the numbers for improvements in tremor, movement, stiffness and so on. And they told me all the things that DBS would not help such as balance, even gait to some extent. Each number was presented neutrally, with no change in expression to indicate personal views although, in fairness, the facemasks probably eliminated all nuances of expression anyway. Itwas all a case of deciding where the risk-benefit fulcrum lay and totting up the numbers.

My daughter and I were a good double-team. I would pitch in with the question, then she. We alternated, each presenting a different facet of our collective anxieties. And one by one they answered each to our satisfaction.

Perhaps the most personally satisfying moment occurred when I expressed my reservations about the likelihood of achieving the kind of results found in younger PD patients since I’m 63. The surgeon, with a smile I could see behind his mask, said it’s not a case of chronological but functional age and he had seen my MRI scans and was satisfied that this was a good brain without evidence of atrophy. In essence the cranial cavity was filled with brain rather than cerebrospinal fluid. Good to know. And fingers crossed of course.

All other things being equal, they felt I was a good candidate and were happy to operate with one proviso which I’ll cover in the next blog. The whole tenor of the discussion was positive and engaging. Once I had DBS done, I was part of their family forever. It was more than just a surgeon/neurologist speaking to a patient. They would look after me. It was warming.

Their final words to us, as we left, were that we did not have to make a decision on the spot. We should take some time, reflect upon it and then let them know the answer.

My daughter and I headed to a nearby coffee house to regroup and discuss what we had heard. Nothing is of course without risk. Would I considered this procedure 10 years ago? Obviously not. And I know for a fact that I didn’t even entertain the idea, so determined was I to fight the illness in my own way. But time brings a degree of maturity and understanding. We throw away the foolish fancies of youth and make sober judgements where once we would have dismissed with flippancy. But back then I needed DBS like a hole in the head (I’m sorry, I couldn’t stop myself).

Now I recognise it for what it is. Part of the modern armoury in the treatment of PD. Who knows, it may one day be a condition remedied entirely by surgery. Wouldn’t that be funny. True the procedure is mediaeval, barbaric even. Liked trephining, practised in Paleolithic times. Maybe they had DBS 3000 years before Christ. (No, don’t rush to Wikipedia). It’s not a serious suggestion.

Even for somebody who revels in numbers, it is quite sobering to apply them to one’s own predicament, to reduce one’s own future to a series of calculated risks and gambles. Rather like Douglas Adams’s computer in The Hitchhiker’s Guide to the Galaxy, my future could be described by a relatively simple quadratic equation. The probability of this, the likelihood that, the risk of the other. All reducible to numbers. Yes, things could go horribly wrong. I might even die. It is technically possible but extremely unlikely. Much more likely is that it would go well and I would achieve at least some meaningful benefit for the next several years. It comes down to a balance of probabilities, nothing more nor less.

I caught the train home with the surgical team’s words echoing in my ears. It was my decision and my decision alone. “Take your time”. I didn’t need to.

It’s time to roll the dice.

DBS Diary 01: How I reached this point

DBS Diary 03: The hard yards