My dad had Parkinson's too, and though Hoskins has raised the profile of the disease, we need to improve our understanding of it
Like many others, I was saddened to hear that the wonderful actor Bob Hoskins has announced his retirement having become one of the 127,000 people diagnosed with Parkinson's in the UK.
This decision, although no doubt presumably devastating for Bob, has raised some important questions about just how much we think we know about Parkinson's.
Often seen as the Cinderella of brain conditions, Parkinson's has had something of a renaissance in the media over recent weeks.
I've been gripped by the Olympics.
I've watched hours and hours of coverage – but I found it very hard to watch him at the opening ceremony, his Parkinson's so painfully evident.
Reports also surfaced yesterday of a man with Parkinson's at the Olympics.
He had been arrested because the police, among other factors, allegedly believed his lack of facial expression – a common symptom of the condition – was suspicious.
These reports have helped Parkinson's to leap into the public consciousness, but have they really helped to shine a brighter light on, and reshape our understanding of the condition?
I was perhaps 15.
I remember hearing my father on the phone, talking to his mother.
Dad sounded flat and unemotional – he just said "I see" and "uh-huh" a lot.
At the end of the call, he explained to us – my mother, my brother, and me – that his brother, his only sibling, had been diagnosed with Parkinson's.
Maybe his lack of expression reflected that fact that he didn't know what to make of the news.
How much was understood about Parkinson's more than 25 years ago? What did we know about treatment? What therapies were available? How would the disease progress?
My uncle was in his early 50s when diagnosed, and lived with the disease for more than 20 years.
But how I wished for him a better quality of life.
He shook terribly for so many years.
Was it too much to ask that he could hold a cup of tea in a steady hand? He was fond of long walks in the Somerset countryside, and for a long time, to his credit, stuck at his pastime.
But ultimately that pleasure was removed, and his final years were spent in a wheelchair.
About a decade ago, I was the one taking a phone call, to let me know that Dad, too, had been told he had Parkinson's.
In his 60s, it was a frightening diagnosis, given what we'd already experienced in the family.
But what a marked improvement in the medical help Dad was to receive.
Drug combinations that could be tweaked, rebalanced, to try to find the appropriate dose.
More recently, a pump, not much bigger than a mobile, that sat in his top pocket, whirring periodically as it dispensed his medication.
And above all, help and advice from a Parkinson's nurse, someone that both Mum and Dad could talk to, with specialist knowledge and empathy.
We lost Dad in December 2010.
The last couple of years were hard, of course – for my mother, because there's almost no help for carers, and there were some grim times for Dad, physically.
But I also reflect that for many years he had a relatively good quality of life, certainly one far superior to his brother's.
I've seen the medical improvements at closer quarters than I would wish, and it's taught me that we must strive for more.
Although treatments and support have moved on – how far have attitudes towards those living with the condition really improved? Parkinson's is not a death sentence; once diagnosed, people can live with the condition for many years.
It is important that we don't let the experience of people like Muhammad Ali, Bob Hoskins and of course my dear dad, go to waste.
I would urge everyone to dig a little deeper underneath the celebrity gloss to reveal the truth behind Parkinson's before the spotlight dims again.
Parkinson's diseaseHealthBob HoskinsMedical researchJane Hillguardian.co.uk © 2012 Guardian News and Media Limited or its affiliated companies.
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