Fernando Ricksen, the former Rangers and Netherlands international died yesterday after fighting bravely against Motor Neuron Disease (MND) since 2013. MND is a truly horrible condition, in which the muscles in the body waste away and eventually cease to function, it’s brutality sharpened by the fact that it has little to no impact cognitively so the sufferer is left fully aware of what is happening to them. There is no treatment that effectively slows the progression of the condition and no treatment that alleviates the symptoms. Most people diagnosed die within around 2 years of diagnosis, although there are remarkable exceptions to this such as Professor Stephen Hawking who lived for 40+ years post diagnosis. The video in the Tweet below shows Fernando in the later stages of the condition, where his symptoms had worsened to the extent that his only means of communication was by using a computer that could track his eye movements.
My family and I have history with MND. My Paternal grandmother died of the disease not long after I was born and although only 10% of MND is thought to have a genetic cause, running in families, it was a haunting specter I was conscious of from the first time I learned that a family member had died from it.
When in 2014, I first started to notice the twitch in my right index figure and visited the GP, before ultimately being referred to a neurologist, it was with genuine foreboding that it was possibly MND. Indeed some of the diagnostic tests I went through back then included a nerve conduction test which is one of the tests they do to test for MND, when the specialist, in that gloriously insensitive way that is sometimes present in clinicians involved in neurological care, muttered that there was evidence of ‘some motor units’ during the course of the test, it sent a chill right up my spine.
Ultimately in my case it thankfully wasn’t MND, it was ‘only Parkinson’s’ which may seem akin to being told that you will be slowly crushed to death over a long period of time, rather than being pushed into an industrial blender, however although a total shock at the time, which sent me into a spiral of despair, it is ultimately a condition which by comparison, has a number of treatment options that can maintain a good quality of life for a period of time.
Humanity is still lacking in it’s understanding of how to treat conditions of the brain however. As my knowledge of research into neurological disease has grown, and I’ll add the usual caveat here that my only scientific qualification is a hard earned B in higher Physics, it is apparent that as our knowledge of them increases, in some respects they become ever more complex and in some ways it pushes back to the timescale for when better treatments can be brought to patients. These are life changing conditions that can ruin careers, relationships and lives. Alzheimers, Multiple Sclerosis, Huntington’s, Multiple System Atrophy, Progressive Supernacular Palsy and Parkinson’s are amongst the labels we give to these conditions, all come within those different labels in different flavours and degrees of severity, often we don’t even have treatments that ease the suffering of the individual diagnosed.
Of Fernando, he was a fierce competitor on the pitch. I hated him as an opposition player as he was often the driving force for a Rangers team that got the better of my beloved Heart of Midlothian FC. I remember one game at Tynecastle where he nearly scored a hat-trick in a comfortable Rangers win and he was easily man of the match.
It was that ferocity and tenacity that probably enabled him to fight on for so long in what was to be a battle he was always going to ultimately lose. He has done a great deal to raise the profile of MND, and we can only hope that his legacy is that profile leads to increased investment and ultimately in interventions that improve the quality of life for those diagnosed.
What resonated with me most was his determination to spend as much time as he could with his daughter Isabella who was born in 2011. Writing as a father of a 3 year old boy, whenever dark thoughts may enter my head about what the future may hold for me given my own condition, it is both he and my wife who inspire me to continue fighting. Parkinson’s doesn’t tend to be a direct cause of death, but a contributing factor, which differentiates it from MND, in addition to it being treatable. It does ultimately shorten life expectancy.
However life is precious, and what Fernando’s story tells us is that you both never know what is round the corner, and also to make the most of the time you have.
granderouge 