Exactly What is Parkinson's, Anyway?
Tue, 19 Apr 2016
“It’s not all bad news; your condition is not particularly life-shortening...There’s certain to be a cure in the next ten years, or so...” Thus spake the consultant at Bedford General.
When you’ve just been diagnosed with Parkinson’s at the age of 53, it's not exactly good news, either. Fifteen years down the road, he (we) is still soldiering on, still impatient for a cure that is even further away than it was then. Seems the more is learned about the vagaries of the human brain...the most complex of all our bodily organs, the more is realised how little we really know.
And so, the relentless regime of tablets began...low dosage medication, at first, but as the condition progressed so its strength was increased. Parkinson’s is a progressive, neurological disease that gradually destroys the brain cells responsible for producing dopamine. Dopamine is a neurotransmitter and these tiny chemicals cross the gap between the neurons in our brains, passing on messages, and is responsible for all our voluntary movements, from walking...picking up a cup of tea, writing a letter, turning over in bed at night, to the thing we all take for granted most, and that’s our ability to speak. Parkinson’s gradually eats away at all of these, and much more besides.
The crux of the matter now is, that after fifteen years with the condition, his medication has reached maximum dosage, leaving, solely, the relatively uncharted territory of Deep Brain Stimulation, or DBS as the last resort; a daunting prospect indeed, even though his symptoms have considerably worsened along with marked cognitive deterioration as more and more dopamine cells bite the dust, rendering pills less effective each passing day.
During a discussion with his Parkinson’s nurse specialist, about two years ago, she was keen for us to consider DBS as a serious alternative. Not surprising – bearing in mind few Parkinson’s patients are willing to undertake the gruelling procedure, and consequently it is difficult for the medical profession to judge its effectiveness, statistically speaking. We were both more than sceptical, and if I mention the word ‘guinea-pig’...well, this is how it seemed to us. So, we decided to consult our daughter (a former RGN, currently studying for a doctorate in Child and Educational Psychology) to look into it for us, which she was more than keen to do.
Speaking of guinea-pigs we owe a lot to them...but that aside, when getting down to the nuts and bolts of things...the real nitty-gritty, the biggest risk of all is not to be sniffed at...the extremely high probability of suffering a stroke during surgery. She tells us it requires two operations; one to insert probes deep into the brain and a second to attach the electrodes to a voltage box under the skin of the chest. It would also entail a series of assessments , meaning he would have to go ‘cold turkey’ with his medication, so as to enable a clear indication of his most troublesome symptoms.
“Well there’s your answer, then,” she concludes. “It is not a miracle cure, nor an easy route, but it is an option if things become too unbearable.”
As a family we agree that until then he should bide his time, and so we continue...living from hour to hour, week to week, month to month, like fellow Parkinsonians. For us, presently, we feel there is no other choice, but should he ever decide to walk down that ‘road less travelled’, I’ll be right there beside him. The trouble is, it would be just my luck to slip on an errant banana skin along the way and break my leg...but that, as they say, is another story. But even if I did, god-willing our daughter would be there to pick up the pieces and put us together again, as ever.
“By the way,” she quips as she’s leaving, “I’ve put the necessary wheels in motion to donate my brain for Parkinson’s research...not until after I’ve finished with it, of course.”
It raises a smile, and beggars the question, ‘What greater love? ‘
And maybe, love will find a way, in the end, but for Muhammad Ali, Michael J. Fox, Billy Connolly, Billy Graham, Lynda Ronstadt, Roger Bannister, and my husband, I fear it is already too late. And as for Pope John Paul, Pierre Trudeau, Deborah Kerr, Vincent Price, Robin Williams, Bob Hoskins, Dudley Moore, and Mervyn Peake, sadly, it is already too late, but today marks the start of Parkinson’s Awareness Week, and I put it to you. Surely, better late, than never?