Tag: reality

The foothills of dementia

Over the course of my life to this point I have been one of those people who happily talks to himself. Sometimes it’s just the odd word, other times entire sentences, paragraphs or scenarios. At school, in one of those boarding schools of random brutal discipline, I talked to myself and was roundly and openly vilified for the practice. “Stamford” I heard a prefect bellow across New Court “why are you talking to yourself? Are you going mad?” It reminds me, some 50 years later of that famous drill instructor in Full Metal Jacket.
I often talk to myself and find it no cause for concern. If it is an indicator that I’m becoming insane, it’s taking its time about it. I am no more mad than I have ever been for the last 50 years. Now when people ask me why I talk to myself I say “it’s the only way that I can be sure to enjoy intelligent conversation.”

However, brushing aside such jocularity for a moment, let me introduce a slightly darker dimension to such conversations. I mean of course The Big H. Hallucinations. From the marginal to the major, these are all a part of “The Parkinson’s Experience” as the great Phineas T Barnum might have styled matters. Partly the underlying pathology of Parkinson’s itself and partly the superimposition thereupon of complex psychotropic drugs, hallucinations represents that ragged edge between normality and delirium.

For me, hallucinations have been a predictable if, for the beginning at least, neutral companion, neither reassuring nor Intimidating. The usual stuff – crawling insects typically around the periphery of vision, disappearing upon any visual saccade.

Small animals too are not uncommon subjects of hallucinations, sometimes no more than a sense of presence rather than explicit visual sighting. What kind of animals? Mice, shrews and voles mainly. Certainly nothing much bigger. No need to worry about rats the size of cats.

As the condition progresses, the hallucinations becomes more complex and concrete. Visual persistence changes as well as does their perception as real, competing with real real, if you get my drift. Only last week, I was chased around the kitchen table by a guinea pig the size of a cougar. Fortunately, being of a reasonably widely read disposition, I realised instantly that this was not a guinea pig but a capybara. Of course that’s only part of the answer. I still haven’t established why a capybara was in my kitchen. This is where REM sleep kicks in, making the unbelievable believable. Once you have established that the house guinea pig is now the house capybara, anything is possible.

A good friend of mine was particularly troubled by hallucinations – not by the hallucinations themselves (for in truth he had none at that stage) but the idea of them, the notion that these alternative realities might one day show up to play games with his cognition.

Over the years, not surprisingly, the frequency, intensity, and credibility of my hallucinations has extended substantially. The flies and cockroaches are largely unseen, kept at bay by the mice, all the way up to the capybara. An entire food chain in action.

But the animal components of the hallucinatory landscape are infinitely less disquieting than the participation of human hallucinations. For a couple of years now I have been woken in the middle of the night by my children wanting to talk over matters of some urgency. Not in and of itself disturbing except for the fact that my children are all grown up now and dotted round the country. Dotted around other countries even.

How do these figures occur? As ghostly, pale ectoplasmic wraiths, translucent embodiments? No, they appear exactly as they would were they actually present. And do these figures fade away as I turn my gaze to them? No, again they are very real. I have become so accustomed to their presence that the only way I can distinguish them from their genuine embodiments is by trying to shake their hands. My hands pass through theirs.

I can hear you, dear reader, composing the question to me – if my hallucinations are this real, and I safe to drive? Will I find myself swerving into the path of oncoming vehicles or mowing down entire classes of schoolchildren? The answer is of course no, I can’t make those guarantees. And that is why I surrendered my driving licence last year. The toughest decision I have yet to face in the context of Parkinson’s, but a necessary one.

Am I becoming demented? Are these hallucinations the first foothills of dementia’s mighty peak? I don’t know. I have had Parkinson’s for some 18 years. Maybe I have held the line, like Stonewall Jackson’s Virginia infantry in the face of impossible odds. Maybe it can be successfully treated? I don’t have those answers to hand but I do know, if nothing else, it is time to ask the questions.

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 (www.jonstamford.com) 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.

Tosh.

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.