Parkinson’s has been a disease that has affected 72-year-old Valerie Rossiter more than most.
For 17 long, arduous years she had to watch her husband John’s health slowly decline because of it – helpless to do anything to stop it.
‘People don’t believe me when I say this but I sat beside John, in bed for 17 years,’ says Valerie, of St Michael’s Grove, Fareham.
‘I never went to bed for 17 years. I had to help him through the night. I used to get out of bed 40 to 50 times a night.
‘There were nights when I sat beside him and I just cried the Solent.’
This was only the latest chapter in Valerie’s life, which has been blighted by the degenerative neurological disease.
In her childhood she remembers vividly her father’s best friend battling against the illness and how he was unable to play with his children.
Then, her eldest uncle, Ted Charman was diagnosed with Parkinson’s, eventually dying in 1973.
It was at this time her beloved father, George Charman, also started showing symptoms of the disease. After a 12-year struggle, he too died, aged 79.
Valerie thought that was the end of her Parkinson’s heartache – but in the late 1990s the devastating news was broken that John had the illness.
‘We were both shocked by it – we were only in our early 50s,’ she recalls.
‘John was sacked from his job with one month’s notice.
‘There we were with no money coming in. I had to leave work at Fareham College to look after him.
‘I was well aware of how awful the future was going to be.
‘It sounds odd, but there was a bit of me that said “If it’s got to be anything, thank god it was Parkinson’s”.
‘A – because we knew a lot about it and B – we knew it wasn’t going to kill him.’
Thankfully, Valerie had a strong support network of friends and others who were battling with the disease.
In the 12 years before John’s diagnosis, she had been the chairwoman of the Parkinson’s UK Fareham and District branch.
During this time she had helped hundreds of people from across Fareham, Gosport and Meon Valley cope with the condition.
Tragically, John developed dementia alongside his Parkinson’s before his death in January 2014.
‘For the last six years of his life he didn’t know me,’ says Valerie.
‘That was the real thing that made it so difficult and different – that was unknown territory for me.
‘I lived in hope that one day he might have a small window and know what’s going on, recognise me. But he never did.’
Valerie took the tough decision to move her husband into Peel House nursing home, in Woodcote Lane, Fareham, where he died peacefully.
‘The last breath was him and me together,’ she adds.
‘I didn’t want anyone there. I was singing to him when he died.’
John was buried just four days before his 70th birthday.
Valerie said she is still haunted by his death and said at times it is tough to cope. Next year would have been the couple’s golden wedding anniversary.
‘There are two things that trip me up: I find it really difficult seeing couples of my age holding hands or sitting at a concert while I’m on my own,’ she admits.
‘I sometimes wonder what we would be doing today if he was still with me.’
Valerie has told her heartbreaking story in an effort to raise awareness of the illness.
It comes as this month saw the annual Parkinson’s Awareness Week taking place.
Valerie said that there are many people across the area who choose to suffer in silence, scared of going to the doctors.
‘People think that they have just received a life sentence when they are diagnosed,’ she says.
‘But it’s not a killer, it doesn’t kill people.
‘It’s all so scary. But in groups like ours it’s a safe, friendly environment. We can help you through it.’
She adds being part of a support group can play a key role in helping families and sufferers cope after diagnosis.
‘Together we can deal with this,’ says Valerie.
‘In isolation it becomes very difficult to cope.
‘No-one need suffer Parkinson’s alone.’
The group meets at Crofton Community Centre, in Stubbington Lane, on the first Monday of every month, from 10am to midday.
There are also support groups in Portsmouth and on Hayling Island.
For details of the Fareham group, call 01329 845776 or email firstname.lastname@example.org
Alternatively see parkinsons.org.uk for details on other local groups.
Speaking of why she continues to support those with the illness, Valerie says: ‘John said to me not long after diagnosis “The only sense I can make of what I have to suffer is if we use if to help other people”.
‘That’s now my mantra. I always feel guilty about for thinking about it, because had to suffer, but that’s what drives me.’
FOR former Chief Petty Officer Nigel Ayling May 23, 2002 is a day that he will never forget – it was the day he was diagnosed with Parkinson’s disease.
He was just 38 when medics told him about the life-changing diagnosis. It came as a bitter blow for the keen sportsman.
The only symptom he had shown was backache and a pulsing between his right thumb and index finger that had developed about three months earlier.
‘Before that fateful day I was cruising along in life unaware of what was in store for me,’ said Nigel.
‘My wife Bridget came with me to the hospital to see the neurologist, an army colonel.
‘He introduced himself and after a few questions and some introductory remarks he examined me then asked me to walk down the hall, turn around and walk back.
‘After that short walk we sat down in his office and he told me, “You’ve got Parkinson’s disease”. It came as a bombshell.
‘Go in with a painful back and come out with Parkinson’s – it felt like being short-changed at a supermarket and not being able to do anything about it.
‘There was no reaction from me because I was shocked – how did someone like me get a disease that old people suffer from?’
Nigel – who used to play rugby, football and was part of the navy’s field gun team in Portsmouth – battled for five years against the condition before he was forced to leave the military in October 2007 – after 28 years’ service.
Now, almost a decade on from his retirement from the navy, Nigel is running a Parkinson’s support group for people in Portsmouth.
Working Age Parkinson’s Support Group runs a group in Portsmouth for those diagnosed with the condition.
However, Nigel fears that many people are still battling the illness alone when they needn’t be.
‘A lot of people don’t know about the groups available to them,’ he said.
‘Someone is diagnosed with Parkinson’s every hour in this country. It’s quite common.’
WAPP holds bimonthly meetings at The Link in 49 Havant Road, Cosham, and also meets on a Friday morning to use the gym at the Mountbatten Centre at Alexandra Park.
Mr Ayling said: ‘We work on a volunteer basis. They can sit and have a chat with everybody or have an hours fitness class with Sarah the trainer.’
To find out more about the group, go to wapp-portsmouth.com or call 07958 711551.
Parkinsons: fact file
Parkinson’s is a progressive neurological condition.
Every hour, someone in the UK is told they have Parkinson’s.
One person in every 500 has Parkinson’s. That’s about 127,000 people in the UK.
Most people who get Parkinson’s are aged 50 or over but younger people can get it too.
People with Parkinson’s don’t have enough of a chemical called dopamine because specific nerve cells inside their brain have died. It is not known why these cells die.
Without dopamine people can find that their movements become slower so it takes longer to do things. This can make everyday activities, such as eating, getting dressed, or using a phone or computer, difficult or frustrating.
The three main symptoms of Parkinson’s are tremor, muscle stiffness and slowness of movement. But not everyone will experience all of these.
As well as the symptoms that affect movement, people with Parkinson’s can find that other issues, such as tiredness, pain, depression and constipation, can have an impact on their day-to-day lives.
Parkinson’s doesn’t directly cause people to die, but symptoms do get worse over time.
To find out more about Parkinson’s or for tips on living with illness see parkinsons.org.uk.