The average person with Parkinson’s lot is not a happy one. An increasingly acknowledged litany of non-motor symptoms add to the obvious freezes, shakes, rattles and rules that make up our daily repertoire of silly walks. We shuffle and glide, mambo and tango our way for the entertainment of others it seems. Fortunately our inability to “just walk properly for goodness sake” comes with a thick skin to protect us from the slings and arrows of our outrageous misfortune (to slightly misquote the Bard).
Each day represents another minor erosion of vulnerabilities, another minor pique to add to the already bristling catalogue of biochemical insults we endure. Parkinson’s plays grandmother’s footsteps with us. We stare resolutely ahead while all the while Parkinson’s creeps stealthily up behind us. It’s a cunning little so-and-so.
But something’s changed. And I can’t quite put my finger on it.
Let me backtrack a little. Over the last few weeks I have found myself on the road talking to scientists and people with Parkinson’s. Okay, what’s new – I have done that many times before. Indeed that is pretty much what I do. I talk to people who have Parkinson’s, scientists who research Parkinson’s, clinicians who treat Parkinson’s and the general public which, for the most part, is very little interested in Parkinson’s. And from each of these constituents I form a picture of the condition, a mental map of Parkinson’s and where it’s going.
The last couple of months have been quite illuminating. I have been to Sweden and talked with an old friend, a gutsy and provocative long-term advocate about the role of ethics in self experimentation. I have talked to a visionary laboratory head in Switzerland determined to make sure that patients have a real and not tokenistic role in their research endeavours. I have sat in on the machinations of the Linked Clinical Trials’s august program committee and occasionally chipped in. I have been to the annual Rallying to the Challenge in Parkinson’s Disease conference in Grand Rapids, Michigan, its usual heady brew of patients and scientists jostling for each other’s attention. I have appeared in a webinar about how Parkinson’s begins and a Facebook live session about the impact of nonmotor symptoms. I’ve been a busy boy. I’ve talked and listened, spoken and heard. I have met friends old and new.
There is a new buzz. A new sense that things are happening. The scientists are beginning to piece together the different strands of the Parkinson’s story – the role of alpha synuclein in neurodegeneration, where it fits in the jigsaw and how we might manipulate that. The involvement of inflammation in some of the processes and the window of opportunity that exists for us to find drugs to block the spread of neuronal damage. And there seems to be a wagon train of information supporting the hypothesis that Parkinson’s doesn’t start in the brain. People are looking much more closely at the gut and at the bacteria within the gut. Hard to believe perhaps, that tiny microbes in our bowels maybe where the war that is Parkinson’s actually starts. For an enlightened handful, this seems logical and credible. Yet even as little as a year ago the majority were sceptical. In around a year this has gone from science fiction and conspiracy theory to mainstream thought and research.
What does this all amount to? Are we making the picture clearer or simply muddying the waters?
I can sum this up in a single word. Hope. Or perhaps I should write that as HOPE! For decades we have looked for simple solutions and reasons to cling to hope. As the late Tom Isaacs said “I suffer from two illnesses – Parkinson’s and hope. Only one of those is incurable”.
And you know what – he was right. Hope is incurable. And it’s back on the agenda.