Putting Up With Parkinsons; Me Too

 I’ve been doing some online research on Parkinson’s Disease, which like Jeremy Paxman I was diagnosed with last year. Paxman shared his story on ITV last night. The title ‘Living With –‘ was replaced by ‘Putting Up With Parkinson’s’, reflecting how Paxman feels about it. Me too, to borrow a slogan.

There are about 40 symptoms of PD and each patient gets their own ‘pick-n-mix’ selection. Paxman doesn’t seem to have the tremor which I have (left hand only so far and somewhat reduced since I was put on levodopa, the medication of choice) and which most of the other people in the documentary had to varying degrees. Jeremy has a ‘frozen face’ which so far I do not. I have difficulty vocalizing, which means I cannot do book-reading events any more; this seems not to be a problem for Jeremy and isn’t the reason for his retirement from University Challenge. Paxo feels tired all the time, as do I, and he can no longer operate a keyboard – I’ve gone from being a two-finger typist to a single finger, with many a bloop!

Vivid dreams and hallucinations are very common. A neurologist said that over 50% of sufferers develop psychosis. I have vivid dreams, often featuring dead friends and family members (Bruce Willis can play me in the movie!) but so far no hallucinations.

My most recent author photo, at The Conrad Press dinner event in London last month

My online research threw up some grim statistics. The progression is usually slow with a gradual decline in mobility and agility (Jeremy, like me, already finds doing up shirt buttons difficult), but PD sufferers have an 80% chance of developing dementia after ten years. We are most likely to die from a fall or from pneumonia (presumably pneumonia brought on following a fall?). Paul Sinha, “Sinnerman” on ITV’s The Chase, who is in Year Three of PD, said he was diagnosed after a fall, as was Paxman. I was diagnosed because of my tremor, two years after my GP assured me that the tremor was “almost certainly not Parkinson’s”, so I don’t know if I’m in Year Two or Year Four. I’ve had four falls at home, the last of which saw me lacerate my scalp when I hit a door jamb – easy to see how such a fall could save me the fare for that one-way trip to Zurich.

Last week I lunched with a Brighton friend and his wife. He’s in Year Twelve of Parkinson’s and has been spared a date with dementia but he looked as if he’d been beaten up, following two falls onto his face in recent weeks. Parkinson’s, like Alzheimer’s, is not a pretty road to go down – I guess there aren’t any pretty roads in this area of terminal decline. £100 million in medical research has not yet found a cure, but more effective slowing-down treatments may be in the pipeline.

Me at 19. I’d just finished my first novel. Unpublished. Unpublishable!

Regrets, I’ve had a few, but then again –” My biggest regret is that I’ve been writing novels for sixty years and I’m still waiting to achieve serious sales as a self-published author or, best of all, get accepted by a mainstream publisher. I’ve always identified with Prince Charles, who had to wait more than sixty years to be King (on the plus side, I’ve been a ‘queen’ for more than sixty years!). I’ve got another novel waiting to go to print (the sequel to Soap-Stud & Blue-Movie Girl) and two more part written, including a follow-on to Lillian and the Italians and a book which does more justice to my mother as a main character (Lillian has elements of my mother’s life but not her spiritual journey). Hopefully, writing and peddling books will keep Alzheimer’s at bay.

Most people seem to live with PD for up to ten or twelve years. Keeping active is key, mentally and physically. As with dementia, the later years look more like a curse than a blessing. Watch this space. My guru of choice has long been Doris Day: Que sera, sera.

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