PSP but KBO

It is a slow torture to watch the person you love dying before your eyes. We are faced with a condition for which there is no known cure; medication can't treat it or alleviate the symptoms, and the research into its causes and possible reversal are still at an early stage. My wife is suffering from Progressive Supranuclear Palsy (PSP), which for many years was diagnosed vaguely as Parkinsonisms. Parkinson's drugs seemed to work for a while, but then quickly lost their efficacy and last year it was decided to stop using them (Stalevo) altogether. It had taken the consultant a number of years to refine his diagnosis, and so now we know what we are up against. This is what Dudley Moore (Pete & Dud; Beyond the Fringe; jazz musician; film star) suffered from and I remember thinking at the time how bizarre his condition was. And suddenly he'd gone.

Now, however, it's up close and personal. It is both a blessing and a curse that M's version of it is a slow-onset type. We've been going with this since the mid 1990s, but in 2010 came the PSP verdict. Each tiny deterioration has been like a boat inching down a slipway and that image also serves to depict a chronic aspect of PSP, namely the loss of balance. Falls are innumerable, almost always backwards, and what gets hit first is the head. M wears a rugby scrum cap at times, but it isn't appropriate to have it on for the entire day, and so our trips to A&E at our local hospital are frequent. The other features of this cruel condition are: the loss of speech; constantly runny eyes and nose, yet not enough saliva in the mouth; loss of handwriting through poor motor control; incontinence of the sort that takes you by surprise; muscular rigidity of the face so that it is hard for anyone unfamiliar with her to read M's thoughts; and finally an increase in facial hair, which is a blight for a woman.

And yet..... and yet. Throughout this long ordeal M has never once uttered a word of complaint, has never once shed a tear, has never once shown an ounce of self-pity. In fact she laughs at her misfortunes and giggles when I pick her up for the umpteenth time. Churchill's wartime acronym was KBO (Keep Buggering On), and although there is a stoicism inherited in post-war years from a military father for this beautful person, it is her grace under pressure which is truly astonishing. It is an agony to see what is happening to her, but she makes it easy for me to look after her. She thanks for me for anything I do for her, which she doesn't have to, and laughs at my daft jokes (I'm glad someone does!) with which we leaven the day. Through all this there has been a quiet development of her faith. For years it was more of a formal observance, but now her belief is strengthened. She may not be cured, but she has been healed.