The story so far


In July 17 I was diagnosed with Motor Neurone Disease – Bulbar onset. I had been having problems choking on food since Christmas and had started to need a drink with meals to help the food go down. In May I told my wife, Julia, that I was having problems forming my words too and soon after we decided to see the GP. Because Julia is a nurse, working in elderly care and training carers to look after people in their homes, she’d looked after people with MND and worked out what it could be but kept it quiet. So by the time we saw the GP she asked if we could be referred to the neuro consultant rather than follow the path to the Ear Nose and Throat specialist. In June we saw the neuro consultant and she did a thorough physical exam, head to toe, and saw the tell-tale signs. I was a bit surprised to be asked to strip off to my underwear when all I’d gone in with was a dodgy throat. After a few scans of head and neck, just to check it wasn’t anything else, we went back to the JR and saw the MND specialists who confirmed it was MND or ALS as it’s known in America.  At the time I didn’t really know what MND was so I looked on the internet and got a shock. I contacted the MND Association and they sent some really useful information that was written in a more sensitive and helpful way than Doctor Google. The diagnosis helped me understand what had been happening in my body and mind. Because the disease has a very slow rate of deterioration you don’t notice things changing until someone points them out. The diagnosis made sense of the swallowing and speaking problems and explained why I sounded drunk after 1 pint. It also explained the tiredness and helped me find ways to manage it. I had been struggling with inappropriate laughing and crying and that was now explained as emotional lability, something that could be treated with low dose anti-depressants. It looked like the life expectancy was 6 months to 10 years and an average 2 years. So that was a shock, thinking that time might be a lot shorter than I had expected. I looked into all the practical things; financial side and the company sickness policy.

Looking back I had felt tired in January and even in September 2016 I had gone to the doctors with chest pain; but nothing was wrong with my heart. Maybe that was muscle aches from early days of the disease.

On the emotional and spiritual side, for the first couple of weeks I was in denial until I got the diagnosis confirmed in July. Then there’s some grieving for the years I may not see and thinking about death and what happens afterwards. As a Christian I had a bit of theory and I had looked into Heaven when Mum was diagnosed with terminal cancer a couple of years ago; but now it was affecting me so I had to look deeper.

I knew that God didn’t promise us an easy ride but that He had promised to be with me in this.

There was a lot of crying in the early days while getting used to the idea and turning my reliance onto God. Your whole outlook changes; projects and work seem less important and focus turns to people. Living everyday seems more important, not worrying about tomorrow.

I knew God hadn’t put this on me. We live in a broken world – why should I be any different to the thousands of other people that get MND randomly? I’m sure that in the future scientists will understand it better and may have some treatments to slow it down effectively or reverse it to a complete cure. But right now medicine can only help me live with it the best I can.

I soon came to the conclusion that we’re all terminal, just a different number of days.

I had been looking into healing over the last 5 years or so. I had seen people healed and met people that had been healed in ways that were amazing. So I know God can do it. But not everyone is healed; there’s some mystery.

Why plan A?