Day #608 – Trialling times

Why hello there – it’s been a while.

When I started this blog, I intended to write a post every week or two.  As you can see, I’m smashing that target.

My recent radio silence is not due to a lack of ideas or disinterest in the blog.   I still very much enjoy writing to you.  The problem is, when you’re feeling like shite and your hands don’t work, it’s hard to do much of anything.  

However, I’m determined not to let this blog become an ever-escalating corpus of suffering and despair.  I’ll admit there’s a fair chunk of that going on in my life, but I feel that particular genre has already hit saturation point within the MND community.  

Within this site – this little piece of my legacy – I try to shuffle a few interesting Jokers into the crappy hand I’ve been dealt. As a result, I only write when I feel I can spout something onto the Internet which is a tad more upbeat than “fuck it all the hell”.  

Thankfully, something happened recently which lifted my spirits.

Two weeks ago I was accepted on to a phase 1 clinical trial at Kings College Hospital in London.  The trial is investigating a completely new treatment for MND, developed by a biotech company called QurAlis based in the United States.

After 8 hours of screening tests, including blood work, brain scans, being poked, prodded and electrocuted, I finally received the green light to proceed and received my first dose via lumbar puncture last week.  

Look away now if you are squeamish of needles…

These doses (5 in all over 12 weeks) are injected straight into my cerebral spinal fluid (CSF), which is the strange, colourless liquid that our brains float about in and which surrounds our spinal cords. 

Each dose is designed to help reverse the misfolding and misplacement of certain neuronal proteins which are commonly found doing mischievous things in MND patients. As with everything in neurology, it’s mind-bendingly complicated.

“Dose” is a loose term here, as the trial is placebo controlled.  There is a 25% chance that I’m getting the CSF equivalent of sugar pills injected into my spine every fortnight. But 75% odds ain’t bad in the world of clinical trials.

If you are ever in the mood for a cracking hangover headache without the hassle of all that pesky alcohol, I highly recommend a lumber puncture! Fortunately, it subsided within a few days.

I tried to re-frame this pain to be something positive – perhaps a side effect of my motor neurones spontaneously rising from the dead as this miracle drug / sugar pill does its work.

However, it’s fair to say I’m not under any illusion that this new drug is likely to stop or reverse my MND progression.  I’d be absolutely bloody ecstatic if it did – but the chances are akin to winning the EuroMillions on your first go, having forgotten to buy a ticket.

The first Neurologist I saw mentioned this fact about clinical trials back when I was diagnosed in 2023.   ‘Do it for future generations with MND’ was the message, ‘don’t do it for yourself’.  Sod that, I thought, what a pessimistic twonk.

As I slowly got up to speed with the state of research into MND, I reluctantly came to the same conclusion.  This disease has an appallingly low success rate when it comes to clinical trials, and there have been hundreds of them – perhaps thousands.   This sodding disease just flicks them aside and marches on, its shiny armour unscratched.

When I realised how little we currently understood about the causes of this staggeringly complex neurological condition, I had to concede that we’re still in the Dark Ages in terms of treating it. 

Well, perhaps it’s moved into the Middle Ages now, but let’s just say we’re still in the ‘leeches and toad burying’ phase.

But doing this clinical trial, even if it’s unlikely to help my own predicament, gave me a huge mental boost in finding some purpose amongst the hopelessness that often envelops me.  I can at least be part of the solution – a real cure finder.  If no-one steps up to take part in clinical trials, we will never find a cure. 

This beast called MND will eventually be tamed – of that I’m certain – and the whip that brings it to heel will be fashioned from the threads of a thousand clinical trials.  None of which made any difference…

… until one does.