Up To Diagnosis - Brief Notes 2008/09

Looking back now I can’t even remember when the problem started. The first real thing I can recall was the infamous Meatloaf concert in May 2008 and a dash across the road where Carol looked really distressed. The limp was quite pronounced by then so it must have been there for a few months already and I don’t remember us being too worried about it. Although how worried Carol was I never really asked.

We got on with things and Carol was enjoying the course while I was doing my usual, and the children were being the children. August 2008 we went to Newbury for the weekend and I remember Carol struggling with the limp as we walked around. Again though we thought it was just a sprain or ligament problem that she wasn’t resting properly with working so hard herself. We drove straight up to the family to collect Bec from her annual Summer stay up there and then made our way back home without knowing what was coming.

My mum rang me that morning in September – Jake had died during the night. Living far from the family you’re always afraid of that phone call – the one that tells you bad news. But I’d always prepared myself for it to be mum or dad – that’s how it works after all – but Jake had only just turned 2 and seemed to be perfectly healthy. This was without doubt the most devastating thing I’ve ever experienced (up to that point I might add). Someone switched the light off in our family that day and it’s burned a little less brightly ever since. The next couple of weeks are a blur – grief is a very strange thing and everyone just looked vacant. I still don’t know how Carly (and David) got through – losing a child is not something I can comprehend, whatever the circumstances, and Jake’s loss was immense for the whole family.

We returned home and life just carried on as it seems to do but Carol was getting worse. Over the next few months she had every test imaginable and none of them came up with a diagnosis – and looking back that was the problem. With MND it’s a case of "we’ve exhausted every other possibility so this is all that’s left" – but we didn’t know that then. Carol now had a serious limp and the rapid muscle twitches were constantly visible in her arms and legs.

In March 2009 the latest batch of tests had turned up nothing and I can clearly remember Carol ringing me in tears at work. The receptionist at our doctors had quoted a note on her records that said “query MND” – Carol was still in tears when I got home. We went through all the denial stuff – “no it can’t be that it must be a mistake” – but it was suddenly out there – MND – big and bold as that. Our own doctor said he was sure it was a mistake but we had to go to see the neurologlist.

He did a range of tests and, looking back now, was pretty much ready to diagnose but Carol told him she was feeling better. He seemed surprised but said ok and sent us away until July. I do wonder if Carol knew then and was fighting off his words but away we went. Personally I was now worried that it was MND – I’d seen it before in a former work colleague so I knew what it did to him but I didn’t know how it developed. Carol refused to look it up on the internet but I looked into it and became more concerned that the symptoms did seem to match up. I was too terrified to say anything though so just hoped it was a mistake – that's our standard operating procedure isn't it!?

However the next issue convinced me we were in trouble, around May time Carol’s voice started to change. It was subtle at first but the speech became slurred and the voice croaky. Carol became so concerned she stopped going out, doing her course work from home and missing placement days.

Then suddenly it’s that fateful “Sliding Doors” day – July 8^th 2009 – as soon as we sat down the doctors face changed. Carol’s voice was the final clincher – they say you need 3 separate symptoms to make a firm diagnosis. He did the usual tests, but it was all just for show, then he sat down and ended the lives we’d made all those plans for. 

I remember being left alone in the room and holding each other while the tears came. Being the big brave man I then switched into “it’s going to be ok” mode - which I now know was the standard default position and the beginning of the denial stage. We got through a phone call with Margaret from the car park but I didn’t break down until I heard my mum’s voice on the next call. Dad wanted to come straight down and sort everything out but there was nothing that could change where we were.