28/08/2023 - 'How did we get here? Part I' by Alice

Motor Neurone Disease.

Sounds like a shocking diagnosis doesn’t it?  And of course it was a shock to hear those words but I have to confess for us, it hadn’t come completely out of the blue.

To get to diagnosis day 17^th July 2023, we need to rewind back a couple of years to when David first caught covid at the very start of the pandemic, working on a frontline research study and seeing infectious patients with only a flimsy sheet of plastic covering his uniform.

The infection knocked him for six and recovery was slow and hard and it soon became apparent David had post-viral fatigue or ‘long covid’ symptoms.  Seeking help was hard as little was known about long covid at the time but what we did know was that David had constantly aching legs.  He could still run but his legs could take up to a week to feel better and we knew this wasn’t right for someone so fit and active.  He attended the long covid clinic, saw the physios and even had a consultation with a pain specialist doctor but no-one could seem to explain these symptoms.

As it had to, life went on and David was still running and playing football, albeit slower.  He had noticed his legs were feeling weak at times but still remained active in fact, in June 2022, he was still captain of the hospital football team, training and playing matches and also completed a challenging 50k ultramarathon.  He had a deferred space in the Brighton marathon for April 2023 and was determined to finally complete this event after it had been postponed due to covid and his own ill health. 

In January 2023, David finally gave into the idea of ‘jeffing’ – a run/walk technique created by the Olympian Jeff Galloway.  Keen parkrunners, we usually hit the common together on a Saturday morning for our parkrun fix but for some reason, on the morning of 30^th January, I had chosen a lie-in over the run.  Training for his marathon, David had jeffed the couple of miles up to parkrun, completed the parkrun and had then started to jeff home.  Not expecting him home for a while yet, seeing his name flash up on my phone made my heart sink as he had no reason to be calling me while out running and my tendency to catastrophise predicted bad news. 

‘I’ve taken a tumble I’m afraid’ came a croaky voice down the phone.  My nurse brain springs into action – ‘what have you broken?’.  Turns out, only his glasses but I rushed up to the ED department to find a dishevelled and blood splattered husband lying on a hospital trolley.  Aside from a few dents, dings and knocks, his worst physical injury appeared to be a large gash above his eyebrow.  As a hardened nurse, I was no stranger to a gory wound so took a peek under the dressing, only to see David’s skull shining back at me.  ‘OK, that might need a little stitch or two’ I say, turning green and put the dressing firmly back down.

Stitched up and x-rayed, the doctors were now only concerned with the cause of the fall and ‘something cardiac’ was the new working diagnosis.  A two-night stay on the coronary care unit ruled out anything sinister but David, still worried about his loss of consciousness and leg fatigue, asked a doctor if he could have multiple sclerosis.  ‘Oh no, nothing like that’ came the reply, and David was sent home with a clean bill of health and a plastic loop recorder under his skin to monitor his heart remotely.

To be continued...