It was a cold and wet morning on 2 October when we went to St Albans City Hospital for a follow up consultation with the neurologist. After the two sets of tests my NHS consultant’s amazing PA arranged a special ‘overbooked’ appointment for me to be seen at the end of his Friday morning NHS list.
It was very quiet in the outpatient’s department because of the coronavirus protocols, and I didn’t have to wait for more than a couple of minutes before being asked in to see the consultant. Meanwhile Sue sat in the car, in the rain. Only patients were allowed to enter the building.
The consultant was very candid once again. As we’d previously discussed, everything pointed towards motor neurone disease and he now could definitely confirm the diagnosis. The nerve conduction tests had revealed quite extensive denervation; the MRI scan only showed ‘normal wear and tear’ and certainly no indication of a brain tumour that might have been responsible for MND-like symptoms.
I count myself as being very lucky because there isn’t one definitive test for MND and an awful lot of people seem to be passed from pillar to post, from one specialist to another, in a well-meaning attempt to rule everything out before finally landing on the devastating diagnosis of MND. I’m really grateful to my consultant for going with the balance of probabilities, for his pragmatism, and for not tempting me by offering false hopes. He asked me how I felt about having a feeding tube and non-invasive ventilation when needed. I said I would be quite happy to have both. The prospect of choking to death on food or drink (although rare) is truly horrible, so a feeding tube or ‘gastronomy’ would be great and would alleviate that problem. I said ‘yes’ to non-invasive ventilation but said I would never want a permanent tracheostomy. He told me that, in practice, this doesn’t routinely happen in the UK, but he added my request to my notes. I told him that when I can no longer breathe, that will be the time for my life to come to an end.
A number of things would be arranged. Firstly, he would refer me to colleagues at the National Hospital for Neurology and Neurosurgery at Queen Square in London for follow up and care. This sounded like great news to me as I knew the hospital has a world class reputation. Secondly, I should re-start Atorvastatin as it was clear that I didn’t have statin induced muscle weakness. Thirdly, having been diagnosed with a notifiable condition, I would have to contact the DVLA so they could determine my ongoing fitness to drive. Having passed my driving test in 1972 this was one of the hardest parts of the whole day.
I went back to the car where Sue had been waiting. There wasn’t much to say as we had already known full well that I had motor neurone disease. We went home for lunch to start making plans for a very different future.