Tag: Parkinson’s

Joining the Parkinson’s club

Every person with Parkinson’s can remember, often in exquisite detail, the moment when they were diagnosed and, in essence, joined the club. I’m tempted to capitalise “the club”, so pivotal will its impact become in subsequent years. For me, 11 December 2006 was the date in question and, rather appropriately I thought, 11 AM. Like an armistice in a way only this amounted to the beginning rather than the end of hostilities

My diagnosis appointment was perfunctory but decisive, leaving no wriggle room. As time passes the detail fades a little. But it comprised all the usual stuff – walking up and down, finger tap and so on. It didn’t take long. The neurologist in question, a German trainee from Düsseldorf, handed me two or three leaflets detailing the condition and invited me to return six months later. In the meantime, I was referred to Kings College Hospital for further investigation and potential recruitment into clinical trials.

I don’t recall being particularly shocked by the diagnosis or the means of its conveyance to me. I have been a scientist all my life and appreciate clarity of thought rather than medical platitudes. “Give it to me straight, doc” has been my motto for as long as I can remember. And I think that’s the point. It worked for me but I suspect this approach suits rather few.

At the time I was diagnosed, there was and still is a degree of controversy about the means in which people are inducted into The Club. There are, broadly speaking, two schools of thought here: on the one hand there is the gentle, soft-spoken and encouraging “we will help you all along the way” approach. On the other hand there is the, short sharp shock “get it over quickly” means of addressing the diagnosis.

There is of course a conundrum here. Parkinson’s is a long term neurodegenerative condition for which there is no cure at present. That’s the bad news and, grim though it is, it needs to be imparted to the patient. But it is also survivable, and can even be a source of inspiration, helping to refocus, in a positive way, the individuals life.

This duality has been a particular problem in terms of raising awareness. Paint a picture of unrelenting misery and the money positively gushes in. It’s a terrible condition and research is needed. Conversely, too fluffy an image, all smiles and laughter, pulls the rug from under the fundraisers’ feet. If the condition is that much fun we should all join. The truth is that it is both and also neither. Not surprisingly, few are able to walk this tightrope with conviction.

The diagnostic meeting is critical. At the end of the day, certain pieces of information need to be conveyed to patients at that first diagnosis meeting. Yet at the same time it’s important to acknowledge that once the P word is uttered, patients become immediately deaf to any further information. Most patients would be unable to tell you their birthday.

Given all the time in the world, one might wait until the P word has been absorbed before trying to pass over more information. But that situation doesn’t apply. In 15 minutes one must go from assessment, through diagnosis and onto treatment options. That’s a lot of big stuff to get across. And some things simply can’t wait six months until the next appointment. By that time, they will have Googled everything about Parkinson’s both good and bad. Books with titles like “I cured my Parkinson’s by colonic irrigation” encourage them (wrongly) to be feisty and challenging.

This is the point where I’m out of ideas. I can recognise the difficulties but I have no more to offer in terms of solutions. One thing we do know is that patients who are either given or acquire a positive outlook at diagnosis fare better than those who see it (wrongly) as a death sentence.. I’m pleased to see that, since my diagnosis, getting on for two decades ago, practice has changed. Increasingly diagnosis is made by neurologists rather than dilettante GPs, unused to imparting such a nuanced diagnosis as Parkinson’s. With Parkinson’s predicted to reach pandemic proportions over the next quarter-century, how we encourage positivity will have a huge bearing on outcomes for patients. We may not recognise it as such yet but we are part of a huge experiment that may even have bearings beyond Parkinson’s.

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.

Eighteen years of PD

Everybody with Parkinson’s remembers the anniversary of the diagnosis or ‘parkiversary’. I am no different except that I have had more than a few. I was diagnosed with Parkinson’s on 11 December at Pembury Hospital at Tunbridge Wells. In itself the diagnosis was unremarkable, being delivered in a brisk no-nonsense kind of way by a female German neurologist on secondment from Hamburg I believe.

“You have Parkinson’s disease, Mr Stamford” she said, instantly reducing my wife to tears. “Dr Stamford” I said “that’s Dr Stamford”. She looked bewildered for a moment before countering with “but you are not a medical doctor”. “No” I said “I am a neuroscientist” before giving her a brief summary of my prior research career. My wife, quietly sobbing into a handkerchief in the corner, brought this sparring to an abrupt halt. “But you started it” she said as we walked back to the car. “No I didn’t” I offered in a feeble attempt at humour “she invaded Poland”. My wife’s raised eyebrow indicated that the conversation was over. We briefly compared notes before setting off back to work.

All this was the work of a single lunchtime, exactly 18 years ago today. The neurologist, Dr Panzer*, did not invite questions. I just simply became a number, a new manila folder to be filled with shaky spirals, samples of handwriting, and all the usual scans. For that lunchtime, the folder had my name, address and GP. Dr Panzer referred me for an MRI scan and the pages began to fill up further folders (and this is a real folder, not a computer icon).

Before levodopa, life expectancy was poor. Six years from diagnosis to death. And if we are honest, six rather shitty years at that. To reach 18 years of Parkinson’s is, though I say so myself, something of an achievement, albeit a largely passive one, achieved through some 60,000 tablets, potions, salves, balms, and implanted electrodes to stimulate deep brain structures. Oh and exercise of course.

Eighteen years. If it was a lodger, and I sometimes think it is, albeit a largely unwelcome one, the notion of it occupying the spare bedroom in perpetuity would be decidedly unappealing. Even if it was one of one’s own children, 18 will usually be the point where it would be packed off to university with student loan and armfuls of books.

Okay Parkinson’s, it’s time to go. That’s you to go, not me. They have even demolished my local hospital and built a new one in the time you have been occupying my brain, bouncing around in my basal ganglia, lolling on the loungers of my limbic system. 18 years is too long to occupy anyone’s brain. You have wasted enough of my life. I would like to say it’s been lovely but it hasn’t. Take a hint. You are the worst kind of houseguest. If I could kick you out and change the lock, I would do so.

*You didn’t really think that was the neurologist’s full name?

Jon’s last ride

Jt wasn’t supposed to end like this. In the cinema of my mind, I saw it very differently – a mighty V8 Jaguar comes to a halt. Rugged, good looking man (myself obviously), removes Ray Bans, eyes screwed against the low sun, one last check in the rearview mirror, a blip on the loud pedal, one last snarl from that mighty V8 then silence. Pan across the valley to the familiar shape of Neuschwanstein castle as the music swells – “The Entry of the Gods into Valhalla” by Richard Wagner. Closing credits roll as the music thunders to conclusion. Screen fades to black.

That sort of thing.

Epic, heroic and melodramatic all in one. Pete and l had discussed the idea a year or so back when it looked as though I was going to lose my driving licence. A series of narrative conversations about Parkinson’s, linked together by a journey through the various Wagnerian castles. Thoughts by Pete and Jon, music by Wagner. What’s not to like.

But somehow events rarely unfold so tidily. Like a friend who was looking for spiritual enlightenment at the top of Kilimanjaro at dawn only to find her moment of quiet reflection brought to an abrupt halt by four Dutch teenagers intent on mooning her until she left the mountaintop. Fatuous trumps heroic every time.

In my case, there was no Jaguar. No Wagner. No sunset. Just a momentary lapse of concentration approaching a sharp right-left corner in an this ageing Nissan Micra. A screech of tyres, and an abrupt admonishing yelp from my passenger as we left the road, crashed through brush and bushes, coming eventually to rest with that familiar sound of headlamp meeting tree trunk. A cause for celebration with hindsight although it did not seem so at the time (to the right of the tree trunk was a steep ravine, sliding into which would almost certainly have rolled the car).

No Wagner. No Jaguar. No roaring V8. No music at all.

So this is how it ends, I thought.

I know of no male who would ever volunteer the opinion that they were anything less than a god behind the wheel. It’s a machismo sort of thing I think, some DNA relic from our Neanderthal background. Let me break with tradition then and vouch the opinion, endorsed by my friends and anyone who has ever been driven by me, that my own driving is perhaps not the very zenith of automotive control. Put another way, and I have the Parkinson’s at least partly to blame, I am probably not a very good driver. I am the counterfoil.

As my passenger and I collected our thoughts and dusted ourselves down, we counted ourselves lucky. He could have shouted. He would have been within his rights to be angry. Or worried or fearful. He has known me for more than fifty years. He did not need to say anything. We both knew what this meant.

Given time I could have persuaded myself that it was just a one-off, an accident that would not be repeated. But I have a strong imagination and can easily deconstruct any event into a series of what-ifs. What if I had hit a person rather than a tree. What if the car had caught fire after the collision? What if? What if? What if?

It doesn’t matter how long you delude yourself that it will be okay, eventually it won’t. I picked my driving licence from the bureau, placed it in a Manila envelope with a brief covering letter and sent it to the DVLA.

It was not to a soundtrack of Wagner. It was not heroic. Nor noble. Just prosaic. The only thing I could have done. At least it didn’t end in Valhalla.

Signing off

For the last seventeen years I have had Parkinson’s (PD). Yes, I know I probably had it before diagnosis. It’s not a competition. There are no yardsticks to compare each other’s suffering. Simple fact – some get it worse than others. I consider myself one of the luckier ones. But it has been one of the enduring agonies of this condition that I have watched friends fall by the wayside. The journey is littered with the lost, comrades in arms who drew a weaker hand than I. Few things are more heartbreaking than to see close friends tortured beyond repair, their voices fading into the long silence.

Some shade into darkness quicker than others. Some are tortured by the private agonies of dystonia, others dance to that ridiculous self-parody of walking that we call dyskinesia, forced to endure the cruel laughter and humiliation, ultimately too weary to explain to the disinterested. Even for those untouched by such vicissitudes, there are still further miseries in store.

Okay I have had some of these in moderation – by which I mean sufficient to recognise the symptoms but too little to gauge their current path or project a future trajectory. I fall into that category – I have the full range of symptoms, but expressed at a relatively low level such that, beyond a general low-level malaise, none of the symptoms of PD have taken top billing, nor even a starring role. Like I said, I feel lucky. I feel empathy, sympathy or whatever for those in the majority who suffer more than myself.

The last seventeen years of PD have yielded some eight books, loosely based around life with the condition, but often veering into less focused tracts on politics (sorry, I can’t apologise enough), music, philosophy and so on. Some of you bought my books and I thank you for that. Writing is, both at its best and worst, a lonely way to occupy yourself. Short of book signings, press releases, chat show interviews and so on it amounts to solitary aeons at the keyboard. Those sequinned soirees among the glitterati are the province of the JK Rowlings of this world, not hacks like myself. Anyone who was ever going to read my books has done so by now. They will also probably have noticed the same features of my writing, appearing like leitmotifs throughout. And there’s the rub. I have said everything I wanted to say, offered every crumb of advice I could conjure, and cracked every joke I know.

I could carry on, re-treading and re-purposing old ground for what may be a new audience. Not a bad way to spend my time. And, with a little effort, I could easily delude myself that this still represented a service to our PD community. Truth is it doesn’t.

For me, PD is a journey but not in the way you might think. It is no mere progression and intensification of symptoms, though those are a parallel path. No, the journey as such is the transformation of blind optimism into realism. The journey essentially of acceptance.

For many within the PD community, acceptance is a dirty word. I know plenty who might argue that acceptance amounts to an admission of defeat. I don’t see it that way. To my mind, acceptance is the realisation that I cannot change everything. Some things will be beyond my ability to alter, whether by healthy eating, medication, exercise and so on. Acceptance for me represents the acknowledgement that energy spent railing against the injustice of PD is not energy well spent. Fighting PD is sapping. In my book, acceptance is a redeployment of one’s resources where one can reasonably expect benefit. In the same way Russia burnt its cities ahead of the Wehrmacht’s approach, prepared to concede ground and better use the resources they had to preserve the country. So it is with PD. Don’t fight the battles you can’t win.

It has taken me some seventeen years to grasp this fundamental truth, to reach this personal nirvana. Acceptance is the path to survival not to defeat. I don’t want to ‘fight’, kicking and screaming against this unseen enemy. There are better ways of spending that energy.

I have written books, given lectures, been part of panels, workgroups and advisory boards. I’ve advocated till I’m blue in the face. I have been a neuroscientist, a researcher, writer and adviser. Sure, others have done more. But I have done all I can. And at the end of the day I’ve put in my shift. I’ve given all I had. And now I want to turn away from writing about PD. It’s time for younger men and women to spell out their agenda, to raise their banners and and to lead their armies.

This, such as it is, is my baton to pass on to you. Run. Run like the wind. There is a whole world out there. Life is the ultimate journey and we never pass the same way twice. Thank you for reading. My watch is ended.

What then must we do?

Last week I attended the world Parkinson’s Congress (WPC) in Barcelona. These meetings in general inspire me but this one particularly so. In the past my response has typically been to increase my output in my regular job. That applied when I had a job. But for the last few years I have been functionally and spiritually perhaps in retirement. This particular WPC meeting has lit a fire. But how should I respond to this fire? What is an appropriate means? As was adequately discussed at the recent WPC, there are many different ways of helping and many of those would be considered to be advocacy in one form or another.

I have been an advocate in one form or another for much of the last decade and perhaps a little beyond. I was one of the cofounders of the late PARKINSON’S MOVEMENT, this organisation representative of its time but now largely part of the fossil record, swept away by PD Avengers. I jointly founded a group entitled PARKINSON’S INSIDE OUT, a think tank of specialists all of whom had Parkinson’s. A good, if short lived idea. I made a series of videos with Eros Bresolin, PARKINSON’S MOVEMENT WEBINARS or pod casts before such terms were bandied about. I made another darker set of videos entitled THE DARK SIDE OF PARKINSON’S, with prize-winning cinematographer Anders Leines, addressing some of the more taboo subjects within Parkinson’s. Well received critically but still awaiting funding to produce a second series. And I’ve recorded or been recorded a number of Interviews on matters parkinsonian. I have published a half-dozen or so papers on patient -related research in addition to my papers and reviews in my former life in the laboratory. And I have written, for many years now, a blog, at least in part relating parkinsonian matters. These, in turn, have formed the backbone of the book series entitled SLICE OF LIFE.

Okay, I haven’t found a cure for Parkinson’s yet and, no longer working in the laboratory context, am unlikely to. But I have been a member of several patient advisory panels on new therapeutics, and so on. I also review papers as well for various journals and I’m on the editorial board for a couple of them. So I’ve not been idle! I can do stuff. I’m still, in part at least a scientist
This reads a bit like my curriculum vitae or résumé. I suppose in a manner of speaking it is. Because I’m presenting myself here to you and I want you to help me to help you. Does that make sense?
I want to help, I really do. And I’m emerging from a comfortable retirement to throw myself again into advocacy in some form.
But what form? I don’t know yet but it seems to me that it must be somewhere where I can make a difference. Somewhere that plays to my strengths. Although I can rattle a tin as well as the best of them, I don’t think this is my best use. Okay, what is?

Let’s be honest – you saw this coming, right? My reflexes are a little slow these days and I will doubtless have some ring rust to clear before I’m able to be helpful. So let’s step forward. I would like to ask you to tell me where you think I can best help. For instance there are some examples:

1) write a major book on Parkinson’s, for a patient audience or wider. You tell me.
2) audiovisual aids on Parkinson’s?
3) a major motion picture? Featuring Mel Gibson as me.
4) a newspaper column detailing the day-to-day vicissitudes of Parkinson’s
5) making a nuisance of myself in a laboratory again
6) helping people without experience to write high quality grant applications.

These are just a few ideas of the top of my head. I’d be perfectly happy if you weren’t interested in any of these but have other plans that I could help you execute. To return to what I said above briefly, whatever I do has to be impactful and effective or I might just as well go back to watching afternoon television. So think of it as a mercy mission, saving me from endless reruns of Supermarket Sweep.

So please email me with your ideas to re-purpose me! The email address below should be obvious but I have quoted it in this form simply to avoid being auto-spammed by Filipino brides, llama sanctuaries and dodgy stem cell vendors.

j underscore a underscore stamford at yahoo dot co dot u k. If you read it aloud it makes sense

“What then must we do?” Asked Tolstoy in his book of the same name.

You tell me.

Advocacy and caring

Who is an advocate? Is it the middle-aged man, at the height of his professional career, on the stage talking in stark, certain terms of Parkinson’s and all its ramifications? Is it the older woman, standing outside the railway station shivering in the rain, while rattling her collection tin for her daughter? Is it the initially reluctant teenager, going door-to-door with literature and collection tins, trying to square his own actions with his conscience pricked by his shaky granny?

Are these advocates? Do they tick the boxes? Do they increase awareness? Do they support research? Do they help relieve the burden of people with Parkinson’s and their carers? Let me ask you again – who is an advocate? In their own small way each is an advocate. But also none. Because until you understand Parkinson’s, you will always be a surrogate. As a good, now sadly more distant, friend of mine once said “if you haven’t got it, you don’t get it”.

Do I sound ungrateful? Yes, I suspect I do. The man on the stage, the shivering rainsoaked woman and the teenager in his hoodie are all vital cogs in the machinery. Raise money for research because without it, there will be none. No research means no treatment or cure. It means that we will have to explain to our children why people still suffer from a condition we have known for more than 200 years. We will have to say that we did not do enough. And we did not do enough because we did not care enough.

And why did we not care enough? Because, when you bring Parkinson’s home and personalise it, it’s unappealing. It’s granny, fixed expression on her face, dribbling her soup down her smock hearing nothing and contributing as much. Why? Because nobody thought to check the batteries in her hearing aid. It’s the smelly old man in the corner of the nursing home playing solitaire with his pack of cards and quietly sobbing. His daughter no longer visits, declining to change his pads and robbing him of those last shreds of dignity.

Advocacy is easy. And we, the delegates at the 6th World Parkinson’s Congress are a world removed from these dark spaces. While we drink sangria over tapas, renew old friendships and listen to the latest thinking, it’s easy to believe that Parkinson’s is a pussycat and not the ravening beast clawing at our very being. Yes, Parkinson’s is congresses, science and learning. These are still essentials. But let us not forget those other darker realities. Because these are as much a truth as any other.

Spare a thought, amid the hubbub, for those who are not with us in Barcelona. Let’s make a point of remembering why we are here in that great Catalan capital. We are here for one reason only – to alleviate suffering and hasten an end to this pestilence. Remember granny, talk to Granddad, help all.

Leave the conference brimming full of ideas. Ideas that will help expedite the end of Parkinson’s. Think of all those things that could reduce suffering and improve quality of life. Because the reality for many is a quality of life so blighted as to be barely a life at all. And do it with the others firmly in mind.

Never let it again be said that we did not care enough. Never.

World Parkinson’s Day 2023

You would think by now that I had got used to it. You It comes around each year and I still find myself struggling to find exactly the right combination of words to express my feelings. I’m talking of course about World Parkinson’s Day when we parkies strut our stuff (if that’s the right word) for the nonparky population. Each time we try to offer a new angle on the condition, perhaps hint at new treatments that, in their own little way, may help to relieve the symptomatic burden of the condition or even point towards a slowing of progression. But how do we square the circle? How do we persuade the general public, unaware of the conditions many facets, to part with their hard earned money in order to increase or speed up research.
We paint a picture of the condition at its worst – quivering, frozen, half sentient ghosts, their minds lost to impenetrable memories. We paint a picture of blank stares, of barely recognisable expression, of hollowed out shells of people. God’s waiting room.

But there is another side to this coin. The newly diagnosed. People not yet experiencing the condition in all its pomp. People just starting that journey – a tiny tremor here, a little muscle cramp there. Slowing but not yet to stand still. We are so sensitive to those starting their journey that we are at pains to point to a gentler, softer version of that same condition where it is possible to live meaningful and happy lives after diagnosis. That Parkinson’s is a paper tiger. We can live with it for years and years, each subsequent year representing a minor detriment in functionality. A gradual decline into nothingness.

I was diagnosed with Parkinson’s in 2006. 17 years ago as near as makes no odds. I have learnt much over the years about this condition and its effects. Yes, in the majority of cases you can live with this illness. You can pick over the wreckage and construct meaningful lives amid the devastation. And yes, it is a life reduced, a life in abeyance to this neurological scourge.

Above all I have learnt that people with Parkinson’s clutch at straws. We deceive ourselves in order to live. We tell each other lies to get ourselves through the day. For many years I was a scientist and scientists thrive on truth, honesty and integrity. When I became a patient I found myself consciously putting the gods of truth and honesty to the back of my mind and telling people what they wanted to hear rather than what they needed. I lost sight of the horizon of truth amid the mire of falsehoods. I was complicit in this nonsense. I would tell the newly diagnosed that they would be just fine. I substituted hope where I should have spoken the truth.

But hope is surely our only positive I hear you say. Without hope we are lost. I would disagree. We are certainly a different place. Hope has two sides and you flip the coin accordingly. The other side of the coin is hype. The building of false hopes by vested interests. Miracle cures, stem cell parodies and so on. In my opinion I would rather have no hope have my inflated hopes dashed. Follow the science, keep a sense of perspective. Hope if you must. But don’t invest your hope. The stock market of hopes is a dangerous place.

You may take exception to my conclusion if you wish. But I believe firmly that a grasp of the science is important. Read, learn, distinguish between real science and pseudoscience. If it looks too good to be true it almost certainly is.

There will be a cure for Parkinson’s. Of that I am sure. But don’t ask me to put a five year timeframe on that. Only marketing executives and junior doctors too inexperienced to know better. You wouldn’t necessarily want these guys messing with your dopamine. Stick to the science because that’s where salvation will come from.

Dad’s back.

April is World Parkinson’s Month, in which we (people with Parkinson’s) try to raise awareness amongst the general population, the month in which we try to share our experiences to help you understand why we do what we do and why we are what we are.

Briefly, Parkinson’s is an incurable neurodegenerative illness affecting movement and a whole bundle of other physiology. That means it’s going to affect every part of body functioning, it’s going to get worse and there is nothing you can do to prevent that.

These facts are usually presented to patients along with their diagnosis. That’s a lot to take in, a lot to absorb in that brief consultation with your neurologist. It is commonly said that patients die with rather than of Parkinson’s. That’s not strictly true. Life expectancy is shorter with Parkinson’s, the extent to which it is shortened being determined by age of onset and symptom cluster. On the whole, you get about 16 years post diagnosis. And, without wishing to belabour the point, those 16 years will not probably be as much fun as they would otherwise have been.

That sounds, on the face of it, a grim proposition, with little in the way of prospects. That’s not entirely the case. Sure, it is degenerative and incurable. But it is possible nonetheless to slow the disease progression. Careful attention to diet, exercise and medication routine (yes, all the boring bits) can change the clinical picture substantially. Okay we can’t stop it in its tracks but we can slow down this symptomatic behemoth. Parkinson’s is all about time, about buying time. Buying time until a cure is found.

Around 18 months ago, my 16 years were up. I was, if you will, on borrowed time. We (that’s me, my neurologist, my Parkinson’s nurse and my family) had to make a decision. We could let nature take its course or force its hand. And after 16 years of Parkinson’s, you don’t have too many cards left to play.

My choices boiled down fundamentally to one – DBS. DBS stands for Deep Brain Stimulation and, when you know what it entails, you can see why it is always referred to by the acronym. In this procedure, thin wire electrodes are implanted deep below the surface of the brain (around about 2 inches) into, mostly, the subthalamic nucleus. Once in place, tiny pulses of electrical current reduce symptoms of Parkinson’s, some more than others.
Not a decision to take lightly. For many in the early stages of Parkinson’s, it is a bridge too far, a Rubicon most will not choose. After 16 years of symptoms, the situation is different. You can no longer hide. In my case, the choice was simple. I could either continue down the same largely certain path of neurodegeneration or I could take a stand. I could buy myself time.

DBS is not a cure. Let’s be clear on that. It buys you time, nothing more. Time to enjoy life, to help other people with Parkinson’s, to watch my children fulfil their potential, to become the people their best selves. All these things and more. Is it all a bed of roses? No. A small proportion of patients get no benefits from the procedure. Some (thankfully few) get worse. A tiny minority even pay for it with their lives, suffering a stroke as the electrodes penetrate deep into the brain. But for the large majority, it helps.

My surgery was conducted at the beginning of November 2021, at the height of the Covid pandemic. No visitors were allowed. There was no one to hold my hand, figuratively or otherwise.

My electrodes were switched on on 5 November, fireworks night in so many ways! The benefit was instant. Not huge but noticeable. My walking was better, my tremor largely absent and my balance reasonable. I took videos of myself walking up and down the ward and showed them to my children. My daughter burst into tears. “I can’t remember seeing you looking so well” she said, in one sentence justifying the entire procedure.

What more can I say? Dad’s back.

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.