When I was first diagnosed with MND, I began to read more about it, and came across references to it being ‘a journey’. I didn’t really understand it at the time but I’ve come to appreciate the meaning as I’ve learnt more.
MND is quite a rare condition. It affects 1 person in 50,000. At any one time, there are 6-7,000 people with MND in the UK. Surprisingly little is known or understood about it. Only about 10% of people with MND have any history of it in their family. For the other 90% of us, it appears to be entirely random. Studies to try to identify social or environmental causes of MND have all been inconclusive. This rarity, and the lack of causality, leads to the inevitable question, “Why me?” for which there is no answer.
For most of us, our MND ‘journey’ begins with a long delay between onset of symptoms and diagnosis. Like many others before me, with initial symptoms being relatively minor, I put off going to see my doctor for 7-8 months. The relative rarity of MND means that few GPs have ever seen it. Mine suspected Parkinson’s disease and referred me to an appropriate specialist.
The lack of any definitive tests for MND means that everything else that might be causing the symptoms has to be ruled out first. It took 5-6 months to rule out Parkinson’s, and a further 5 months for a neurologist to confirm that I do, indeed, have MND.
Coming to terms with the diagnosis is the next stage in ‘the journey’. Some people find it hard to accept that MND is incurable, and will seek out alternative remedies. My reaction has been to volunteer for clinical research with new conventional medicine drug trials and diagnostic techniques. It might not help me, but it can do no harm, and others might benefit.
A sense of loss is a major part of coming to terms with the diagnosis. There is the loss of anticipated years of life, watching my grandchildren grow and develop; and alongside that is the loss of lifelong hobbies. My enforced retirement from golf has been hard to bear.
My MND ‘journey’ will continue, but where will it take me? Everyone with MND progresses differently. Statistics show that 50% of us die within 2½ years of the onset of symptoms, but others live with MND for many years. It depends on my individual rate of degeneration, and how quickly it moves from the limbs to the vital respiratory muscles. I can but hope and wait.
Meanwhile, I have to start planning for the consequences of further degeneration. Confinement to a wheelchair, for example, is inevitable before too long, so we must either adapt our house appropriately, or move. Either option takes time to implement so decisions can’t be put off until I can no longer walk.
The NHS and the Motor Neurone Disease Association are working together to help people with MND, and their families, understand their options and make these difficult decisions. MNDA can also provide financial assistance for those who really need it. At this stage, I am only just beginning to tap into this knowledge and advice, but it is good to know that, for me and my family, our ‘journey’ will not be made alone.