Jane Hill: BBC presenter on the ‘cruel’ disease that runs in her family – ‘Terrifying’

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Having faced two heartbreaking losses in her life, Hill is now an active supporter of charity Parkinson’s UK, which she says provides a ton of information for sufferers and carers and an organisation that she would turn to if she was ever diagnosed with “anything serious” like Parkinson’s. What started out as “problems” in her dad’s arms, was soon diagnosed as the progressive disease, bringing back memories of her uncle Doug who was first diagnosed when Hill was just 15.

Over the next 16 years, Hill 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.

For Hill’s uncle Doug, descent was gradual, with the chief symptom being the most well-known: shaking. After a lengthy 15 years, Doug started to decline more rapidly, becoming reliant on a wheelchair and healthcare professionals.

Speaking back in 2012 about the toll the disease had taken, the presenter said: “It was subtle in the first couple of years – a bit in the hands and arms – but then it became more frequent and severe. By the end, he couldn’t sit and hold a cup of tea.

“Before, he was always making and mending things. To witness him lose that was incredibly sad.

READ MORE: ‘It’s a terrible death’ Risk factors of the ‘horrible’ disease that killed Paul Newman

“He was once so sociable, but when you lose your independence it’s harder. I remember feeling how cruel Parkinson’s is.”

Already aware of the effect that Parkinson’s disease can have on an individual, Hill tried to take comfort in the fact that treatments and science had improved when she found out about her father’s diagnosis.

She continued to say: “Mum phoned to tell me. 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.”

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Going on to explain how the disease differed for both her uncle and her father, Hill added: “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.

“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 also succumbed to depression.

“His memory went, too, in the latter stages,” says Hill. “But he didn’t talk about how he felt – it’s that generation of men.”

By the age of 75, Hill’s father had lost all ability to look after himself, leading to her mother Margaret giving up her job as a medical receptionist to become his full-time carer, along with the help of a Parkinson’s nurse.

Hill added: “The last couple of years were horrendous. Mum’s very stoical but started sounding more and more exhausted when I phoned. There was one Parkinson’s nurse for the whole county, but she was amazing. And Mum could always phone her.”

Sadly after losing her father, who died in hospital shortly after being admitted for an operation on his intestines, Hill and her brother tried not to focus on the possibility that they might inherit genes putting them at risk of developing Parkinson’s.

She shared at the time: “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?”

The NHS notes that the three main symptoms of Parkinson’s – where parts of the brain become progressively damaged over the years – include the following:

  1. Involuntary shaking of particular parts of the body (tremor)
  2. Slow movement
  3. Stiff and inflexible muscles.

However, a person can experience a wide range of other physical and psychological symptoms including depression and anxiety, balance problems and memory problems.

In terms of inheritance, Dr Kieran Breen, director of research at Parkinson’s UK, says genetics are only one factor in triggering Parkinson’s.

He states: “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 is thought that around one in 500 people are affected by Parkinson’s disease. Most people with Parkinson’s start to develop symptoms when they’re over 50, although around one in 20 people with the condition first experience symptoms when they’re under 40.

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