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.