When Mitch asked me to write something about my personal experience of living with Motor Neurone Disease, I started by reflecting back 2 years, before I knew anything about MND, and certainly had no suspicion that it would affect me.
I was a fit and active 64 year-old then. I’d recently retired and was playing golf 2-3 times a week. I also played tennis and, although less physically active, I was back into playing Bridge regularly, and was helping Joy Mayall to teach beginners at HHGC. Life was good and I was looking forward to many more years of it.
My first suspicions that something wasn’t quite right appeared in August 2016. My wife, Doreen, and I were in Edinburgh for a week at the Festival. As always with city breaks, we walked everywhere, but Edinburgh is quite hilly, and I found myself, unusually, struggling to keep up with Doreen going up the hills. I didn’t seem to have quite the ‘zip’ I was used to from my calf muscles.
I put these early signs down to a combination of natural ageing and, perhaps, a reduction in activity levels. I was, at that time, heavily involved in house renovation, so resolved to get out and play more golf!!
As the winter of 2016/17 progressed, my walking slowed even more, and my ankles didn’t seem as resilient on uneven ground. In April 2017, I eventually consulted my GP, who referred me to the Princess Royal Hospital with suspected Parkinson’s disease. The PRH team subjected me to a barrage of tests before concluding in October that it wasn’t Parkinson’s. Onward referral to a neurologist, and more tests, finally confirmed a diagnosis of MND in March this year.
The diagnosis was shattering. MND is incurable and life limiting. The only medication currently available can do no more than slow it down a little, adding a few months to life expectancy. The inexorable progression of the disease will see me continue to lose functionality in my arms and legs. In time, it will begin to affect speech, and even swallowing. Eventually it affects the respiratory muscles with fatal consequences. The only uncertainty is how long it will take. Everyone is different.
At present, I can, at least, still walk far enough to get from the Club car park to the bar, but not much further. Stairs are becoming more and more difficult. Fortunately I can still hold a pint of beer, or a glass of wine, and I can sort and hold a hand of cards at bridge, but gripping and swinging a golf club or tennis racket is no longer possible.
Coming to terms with the diagnosis is hard, knowing that I can never recover what I have lost, and that it will only get worse. The impact on my family is, if anything, harder to bear.
So soon after diagnosis, I am still exploring the help and support available to MND sufferers. The NHS has a support network to help put me in touch with appropriate professionals such as physiotherapy and occupational therapy. And then there is the Motor Neurone Disease Association.
The MNDA is a voluntary organisation which provides essential help and advice to MND sufferers, their carers, and families, as we make our way along whatever path the disease has in store for us. Friends and family are being extraordinarily sympathetic and helpful, but the rarity of MND means we are all walking in the dark. The MNDA has that previous experience and can help with the difficult decisions we are going to have to make.