'Suddenly Dad's body just seized up': BBC newsreader Jane Hill on the anguish of losing her father to Parkinson's – and how YOU can spot the warning signs
22:02 GMT, 22 December 2012
From the tone in her mother’s voice, Jane Hill knew the phone call brought bad news. Her father David’s ‘problems with his arms’ had finally been given a diagnosis. It was Parkinson’s disease.
For BBC newsreader Jane, history was repeating itself – she knew all too well the slow-burning horror that lay in wait. She was just 15 when she witnessed David take a similar call from his brother, her uncle Doug.
It is a moment she remembers clearly. ‘I could tell from the way Dad was speaking that he had just been told something awful,’ she says.
Fond memories: Jame Hill with her father David in 1990, ten years before he was diagnosed with Parkinson's
Over the next 16 years, Jane watched helplessly as her uncle succumbed to the incurable degenerative disease, which gradually erodes the parts of the brain responsible for movement. And, now, it had come to claim her father.
Today she is speaking in her role as ambassador for British charity Parkinson’s UK.
In many cases, it will be the people around a sufferer who first notice a change. Christmas is a key time for new diagnoses, when children who live far away see a difference in their parents.
For Jane’s uncle Doug, descent was gradual, with the chief symptom being the most well-known: shaking. ‘It was subtle in the first couple of years – a bit in the hands and arms – but then it became more frequent and severe. /12/22/article-2252252-169F57E2000005DC-840_306x959.jpg” width=”306″ height=”959″ alt=”BBC presenter Jane Hill is now ambassador for the British charity Parkinson's UK ” class=”blkBorder” />
BBC presenter Jane Hill is now ambassador for the British charity Parkinson's UK
The progress of the illness, which affects 127,000 Britons and is more common in the over-50s, is particular to the individual – some deteriorate rapidly, some over decades. Sufferers include actor Michael J. Fox, former boxer Muhammad Ali and, most recently, actor Bob Hoskins.
After 15 years, Doug started declining more rapidly. A widower since before his diagnosis and now reliant on a wheelchair to get about, he had a live-in care worker for his last five years. ‘He was once so sociable, but when you lose your independence it’s harder. I remember feeling how cruel Parkinson’s is,’ says Jane.
It was at that time her father was diagnosed. ‘Mum phoned to tell me,’ she says. ‘I tried to talk about how much science had improved the management of the condition. I remember wondering whether Dad would be more distressed because he’d seen his brother in a wheelchair. The thought of him being frightened really upset me.’
David, then 67, deteriorated more quickly than Doug. ‘Dad’s main symptom was that he’d be walking along and suddenly his body would stop. He’d be unable to move for 30 or 40 seconds. It was terrifying.’
David, a retired local government officer, soon gave up driving as his problems with mobility intensified. ‘In the mornings, Mum would have to wash him because he was too rigid to do it himself. It was exhausting for her.’
It wasn’t just the physical symptoms that made life increasingly difficult for the Hills. David succumbed to depression. ‘His memory went, too, in the latter stages,’ says Jane. ‘But he didn’t talk about how he felt – it’s that generation of men.’
David’s medication was administered through a pump, which sat in his top pocket and fed into his shoulder through a needle. ‘It really helped with pain relief but it was a constant reminder of the disease.’
As for Doug, the contrast with David’s younger self was vast and tragic. He was ‘obsessed’ with rugby, playing it into his 30s and trekking up to Twickenham from the family home in Sussex to watch matches until his diagnosis.
But by the age of 75, he’d lost the ability to look after himself. He started hallucinating, a side effect of his medication. ‘The last couple of years were horrendous. Mum’s very stoical but started sounding more and more exhausted when I phoned.’
For the last 18 months, Jane’s mother, Margaret, who had given up her job as a medical receptionist, finally had some help. A Parkinson’s nurse called Louise would visit, though only once every three months. ‘There was one Parkinson’s nurse for the whole county,’ explains Jane. ‘But she was amazing. And Mum could always phone her.’
Increasingly concerned about their mother, Jane and her brother Simon arranged for David to spend one week a month at a care home. ‘It gave Mum an opportunity to catch up on sleep. She never told me the extent of what she went through, not until later on.’
Living two hours’ drive away in London and with a demanding career at the BBC, Jane struggled to see her parents as often as she wanted. ‘I tried to go as much as possible but felt guilty it wasn’t enough.’
In November 2010, aged 77, David was admitted to hospital for an operation on his intestines. ‘He never really recovered,’ says Jane. At 6pm one Saturday, the hospital phoned Margaret to tell her David’s condition had suddenly worsened and encouraged her to visit quickly.
‘But Sussex was blanketed in snow. The buses weren’t running so Mum rang every cab company she could, but all told her that the road to the hospital in Eastbourne was impassable.’ Unable to get to the hospital, Margaret and Jane were forced to stay at home. David died later that night.
Support: Jane Hill pictured with her fiancee Sara Shepherd, a camerawoman, who has helped her cope with the loss of her father
‘The thought that he didn’t have any family with him is awful, still, to this day,’ says Jane, unable to hold back tears.
Thankfully, Jane had the support of her fiancee Sara Shepherd, a camerawoman, to help her cope with the loss. ‘Sara has been amazing,’ says Jane. Sara was a rock too during the final year or so of David’s life, visiting Jane’s parents with her. The only regret for Jane, who met her partner four years ago, is that Sara never saw David at his best. ‘It’s hard for Sara to imagine Dad as a healthy person.’
And despite her brother Simon living in Australia, regular Skype chats mean the family can be there for each other.
Two years after their father’s death, Jane and Simon try not to focus on the possibility that they might get Parkinson’s. ‘I’m conscious of it, but my brother and I don’t sit around in a morose fashion thinking, “Oh my God, one day we might be diagnosed with a degenerative disease” because what’s the point’
Dr Kieran Breen, director of research at Parkinson’s UK, says genetics are only one factor in triggering Parkinson’s. ‘Some people have an inherent predisposition. There are about 17 genes associated with Parkinson’s, but that doesn’t necessarily mean you will get it. Environmental factors – in particular, exposure to pesticides – are key too. The latest research is looking at how to treat the Parkinson’s itself, not just the symptoms.’
It’s too late for her family, but Jane is not giving up her fight to end to the misery of the disease. ‘We need more Parkinson’s nurses. They’re invaluable.
‘And, in wider terms, we need a cure. Desperately.’
TREMORS IN ONE ARM OFTEN THE FIRST SIGN OF PARKINSON'S
Doctors understand the mechanics of Parkinson’s but they still don’t know the cause or how to cure it. The disease begins when brain nerve cells die and the body is left without the right amounts of the chemical dopamine. This causes shaking arms, stiff joints and difficulty moving. Dr Kieran Breen, of Parkinson’s UK, answers some common questions . . .
Q: What are the symptoms
A: Often the first sign is a tremor. This occurs in about 70 per cent of cases, starting in one arm and spreading to the foot on the same side, before affecting the whole body. Another common symptom is that limbs become stiff. There can also be moments of ‘freezing’, feeling glued to one position.
Q: Anything else
A: Parkinson’s also leads to bowel and bladder problems, dizziness, sweating and blurred vision. Pain is also common. Physical problems can lead to depression and dementia.
Q: Is it fatal
A: No. The disease will become worse but it will not kill. As time goes on, more and more nerve cells in the brain die until drugs cannot replace them. At this point, symptoms will get much worse, making it hard for patients to move easily, talk and swallow. Death is often caused by a secondary infection.
Q: What are the treatments
A: There are dozens of drug options. Doctors are able to tailor dosages to suit symptoms, delaying disease progression. The most common drug is levodopa, a chemical the body can convert into dopamine. When dopamine levels rise, symptoms subside. Exercise can also help.
Q: Are there side effects
A: Drugs can cause involuntary movements, nausea and vomiting, mood swings and hallucinations.
Q: What about brain surgery
A: Deep Brain Stimulation – passing an electric current through the brain – can reduce stiffness and tremors.