I do need a break occasionally... it makes me able to cope better

EVERY hour is valuable to me,” said 68-year-old Helen Wright, from Shaw. “I belong to a walking group, I’ve done a card-making class, and it gives me time to pick up two of our grandchildren from school. Rodney loves to see them though he can’t physically play with them any more.

Helen and her husband, Rodney, 71, are one of the first couples to benefit from a new respite programme for carers of people with Parkinson’s Disease.

A grant from the Wiltshire Community Foundation is funding the first two years of the new respite programme at the Hop Skip and Jump centre in Ridge Green, which launched last month.

The grant funds 300 hours of respite a year, which equates to 25 hours a month, allowing eight carers about three hours per month.

Carers can apply for the respite which will give them around three hours each month to enjoy some ‘time out’ from the arduous responsibilities of looking after someone with Parkinson’s. They might go out shopping, meet friends, visit the hairdresser, or just relax.

Rodney was diagnosed with Parkinson’s in 2004 and now needs full-time care from his wife. She already had nine hours per month of respite care in place, but the new grant is “a lovely bonus”.

“It’s so important for me to know that Rodney is being safely looked after,” she said. “You just get on with it, but I do need a break and some time to myself occasionally, it makes me able to cope better.”

The Wrights have been married for 46 years and have four grown-up children and eight grandchildren.

After being diagnosed with Parkinson’s 13 years ago Rodney continued to work as a carpenter but the tremor in his right hand meant that he had to retire. It also meant he had to give up his hobby of fishing.

Helen said her husband’s health had deteriorated in the last year after injuring his leg in a fall which resulted in sepsis plus chest and bladder infections. He spent two weeks in hospital and a further 12 weeks in rehabilitation.

“The illness knocked him for six, and he needs more assistance, so respite is vital,” said Helen.

“He is prone to falls and his ability to walk varies, depending on his medication levels. He has dementia and this particularly affects his short-term memory. He usually watches TV all day.

“I’m able to do most things for him. The family will come and sit with him too when I need help.”

The couple do try to go on holiday though they have stopped long-haul flights to see their daughter in South Africa after Rodney suffered hallucinations and confusion.

“We had a terrible overnight flight. Rodney was completely disorientated and it was awful for him and for me.”

This year, Rodney will get three weeks respite in a care home.

“I may take this time to go away somewhere on my own,” said Helen. “I know I would feel guilty doing it but I know Rodney is safe and cared for.”

Helen had the highest praise for Swindon Parkinson’s branch.

“They are a wonderful group of people offering lots of support, information and events,” she enthused. “Rodney goes to the seated exercise class on a Tuesday afternoon and I sit and chat over coffee with the other wives - it’s our own support group and you need that.”

And she encouraged other Parkinson’s carers in Swindon to apply for the new respite at the Hop Skip and Jump centre.

“It could be a case of use it or lose it, so to make it worthwhile we need a good take-up,” she added.

Dave Logan is chairman of the Swindon and District branch of Parkinson’s UK, which has 340 members.

He said that the grant had been greeted with “much joy”.

It is the latest boost for the proactive branch which organises a wide range of free exercise classes and activities for those with Parkinson’s and their carers.

“Exercise is proven to be the only thing at present that helps delay the progression of Parkinson’s,” explained Dave, who has suffered from the disease for 14 years.

As well as the weekly exercise classes, The Swindon branch has a busy a programme of events such as canal boat trips, garden visits, talks, quizzes and skittles.

Parkinson’s is a degenerative neurological disease with no current cure and numerous symptoms. Bodily tremors is the most recognised, but there are myriad others such as slowness of movement, ‘freezing’, falls and dizziness, dementia, and problems with speech, eyesight, bladder and bowels.

Dave stressed that no one has to face Parkinson’s alone, and the Swindon branch works hard for sufferers, carers and with raising public awareness.

“Every person with Parkinson’s is different, there’s a huge range of symptoms,” he said.

“Sufferers can be wobbly, with slurred speech, maybe they freeze to the spot in a shop, or can’t sign their name – and others might think they are drunk or on drugs. We are battling to raise public awareness so that others understand, not shout at them for goodness sake.”

For grandfather-of-two Dave, 68, the disease has progressed slowly. Medication helps with his mobility but it has side-effects such as causing him to have violent dreams, memory problems and bladder urgency.

This year is special as April 11 has been designated World Parkinson’s Day to mark 200 years since the publication by English surgeon James Parkinson of his work Essay on the Shaking Palsy, a description of the disease which later became known as Parkinson’s Disease. National Parkinson’s Awareness Week is from April 10 to 16.

Little was known about the disease until the 1960s when the chemical differences in the brains of Parkinson’s patients were identified. Low levels of dopamine cause degeneration of brain nerve cells. Symptoms are alleviated by dopamine replacement medication but these can cause distressing side-effects including compulsive disorders such as gambling and hyper-sexuality.

Research into Parkinson’s has continued at a rapid rate, spearheaded by the Michael J Fox Foundation, set up by the American actor who was diagnosed with Parkinson’s at the age of 29.

The foundation has said its goal is to develop a cure for the disease within this decade and it has raised millions of dollars for research.

“Parkinson’s Awareness Week aims to highlight the fact that people with Parkinson’s desperately need a breakthrough in improved treatment, medication and finding that elusive cure,” said Dave. “We want everyone to unite for Parkinson’s and support research.”

For more information email davelogan_parkinsons.swindon@outlook.com or call 01793 486407. Visit the website of Parkinson’s UK at www.parkinsons.org.uk