Category: After Diagnosis

Eyes on the wrong ball

What a year 2020 had been.  Reflecting on the build-up to my diagnosis through the year – the aspiration pneumonia, the onset of weakness in my arms, difficulties with speech and swallowing… I came to realise that I’d actually been focusing on the wrong things for many years.

In 2003 I’d had the first of two heart attacks at the age of only 48.  Just six years later I was diagnosed with prostate cancer.  In the first ten or so years of the new century I’d had several angiograms, two sets of stents in coronary arteries, and a robotic radical prostatectomy to sort out the cancer. 

So I was ultra-cautious.  I was careful not to over exert myself or to get too stressed. Either could have had consequences for my chronic coronary artery disease.  I was also watchful for other symptoms that may have been associated with the cancer. I was really fortunate enough to be able to retire early, to change my lifestyle, to travel, to relax, and to enjoy time together with Sue.

Little did I know that I’d hit the jackpot and would go on to develop a third fatal disease! My eyes had been on the wrong ball and I guess the earliest symptoms of MND had passed me by as minor inconveniences.

More than this, after our traumatic experience in Vietnam – the awful COVID quarantine hospital, the pneumonia and the dash to get home on the last flight before lockdown, that illness really was high in my consciousness and it got the blame for a number of the subsequent MND symptoms. My voice sounding hoarse, increasing tiredness, another chest infection etc.

But I also reflected on how lucky I had been. Some people sadly are passed from pillar to post, from consultant to consultant, trying to diagnose their MND over many stressful and frustrating months. Thinking about it, the first real indications that I had something seriously wrong with me were at the beginning of August 2020 and just days later my GP had referred me to a neurologist. In early September I was told that all the symptoms sadly pointed to MND. Four weeks later that was fully confirmed. The fact that this speedy process of diagnosis happened during the COVID pandemic makes it all the more remarkable.

I’ve also been very lucky to have been referred on to ‘The National’ (Hospital for Neurology and Neurosurgery) at Queen Square in London, just 35 minutes from home by train and a world class centre of excellence with the most supportive and co-ordinated clinical team one could ever hope to come across. And it’s all free of any costs under the NHS. Amazing.

First visit to the National Hospital for Neurology & Neurosurgery

Thursday 12 November was a memorable day – we took the train to London for my appointment at Queen Square. Kings Langley station was eerily quiet as we waited for the ‘rush hour’ train because most people still worked at home. 

My consultation was really helpful.  So kind and supportive.  Firstly, I had a full examination and then a frank discussion about the condition and its likely progression.  I was prescribed two medications – Teglutik (Riluzole in suspension) and Lorazepam to calm the anxiety caused by choking on food.  

Riluzole is the only primary medication for MND at present – it’s thought to work by protecting the nerves in the brain and spinal cord from too much of a natural substance called glutamate that may be part of the cause of nerve damage.  Studies have shown it can delay the need for ventilation and increase life expectancy by two to three months.  Not a great impact really, but probably worth taking if you don’t experience side effects.  I was prescribed Tiglutik, which is Riluzole in suspension and therefore easier to take.  However, it tastes artificially sweet and has the really odd effect of numbing the mouth and throat immediately after you’ve taken it.  

We talked about benefits to which I was now entitled, and the consultant said that the hospital would provide me with a DS1500 form to enable me to make a fast-track application.  The DS1500 states that death within six months could be ‘reasonably expected’.

We also discussed the right time for the provision of a feeding tube.  It was pretty clear that, even though the consultant was reluctant to give my MND any particular label, its first devastating impacts were on my abilities to speak and to swallow.  We talked about the options of my having a PEG or a RIG.

The neurologist arranged for me to have blood tests, and for me to be seen by a respiratory consultant later in the day.  There was some concern about my lung capacity and lower than normal blood oxygen saturation, which I’d been monitoring at home.  An overnight home sleep study was arranged for a few days later to monitor the quality of my breathing while asleep.  It is bit difficult to sleep with a sensor under your nose, a finger sensor and a device strapped around your chest but a useful experience as it showed that I wasn’t in immediate need of non-invasive ventilation.

Hospice visit

On 19 November we went to the Peace Hospice in Watford for a first meeting with the community nurse. We covered a lot of ground and, having thought about the matter a lot, I was able to talk about my future wishes for the time when MND gets the better of me.

I’m not very brave and I hate pain and suffering. I would also hate to inflict stress, sadness and incessant high demands my loved ones. So I said that, once I reach the end of the road, the hospice will be a more appropriate place for me to be than home. That wouldn’t be everyone’s decision, but it’s my choice for now.

I authorised a ‘do not attempt resuscitation’ form in the event of cardiopulmonary failure and this has been countersigned by a doctor. I now have it in a folder with my Lasting Powers of Attorney, and my Advance Decision to Receive Treatment (from Compassion in Dying). These will accompany me should I ever get admitted to hospital.

I’m really pleased to have these issues resolved. It seems to me that once you have the terms of your death sorted out, you can get on with living your life.