Next steps


After a negative COVID test, I had a videofluoroscopy examination on 19 October arranged by the Speech & Language Therapist. We shared a concern about my swallowing, and the test would show the extent of the problem. It was a very easy test – you sit in a chair with an X-Ray camera to the side and a large TV screen in front. You then are given a series of different things to eat and drink either coated with, or mixed with, a small amount of barium. On the TV screen I could see my head, mouth and swallowing action with the various samples. I’ve always hated the taste of banana and a coating of barium didn’t enhance the experience!

The result of the test was clear evidence that there was ‘airway penetration’ when I swallowed ‘thin’ liquids like water and tea. In other words, it might be easy for me to get a chest infection from some liquids entering my lungs. There wasn’t a problem with thicker drinks. Crunchy biscuit also caused problems of a tickle in the throat, a cough and the risk of choking.

I was prescribed Resource Thicken Up Clear to add to all drinks in future – for example two scoops in a mug of tea or a glass of water or wine. Thickened wine may sound like a travesty, but the slightly jelly-like consistency is actually very nice. Subsequently I have found that naturally ‘thicker’ drinks (like a cappuccino or flat white), or fizzy drinks (like lager) are not so much of a problem.

MND Association

We made contact with the MNDA in a number of ways. I’d already been looking at their online forum on the website, and I’d looked through many of the really valuable pages of online information. The resources are really good.

We ‘met’ our MNDA Area Support Co-ordinator on a Zoom call, and the local South Herts branch of the association made contact with us. We were in abnormal times during the COVID pandemic, but the local branch organises monthly Zoom calls for carers (which Sue always attends) and also monthly Zoom calls for people with MND. I attend this one less regularly as my speech isn’t great and I find it difficult to participate.

We also were introduced to our really supportive MNDA ‘visitor’ who is in regular contact. She wasn’t able to visit us due to COVID restrictions but monthly phone conversations have been much appreciated, and she is always available to take a call if we have questions or concerns.

Quotes for ‘through the floor’ lifts

There’ll be a specific page in this blog about wheelchairs and lifts, but during October we had various sales people around to provide quotes for through a through the floor lift to would take me in a power wheelchair from our dining room to my newly designated study bedroom above. These lifts are expensive, but much cheaper (in our case) than an alternative option of converting our well used garage into a bedroom and new bathroom. We did have a quote for one very nice looking lift that, on close inspection, was not actually big enough to accommodate a power wheelchair. We could have made a very expensive mistake, as others have done.

Network of care providers

Towards the end of October we were getting quite confused by all the names, so we started drawing a map of all the people we were having regular contact with, providing us with care and support. You can see how complex the network has become!

Diagnosis Day

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.