Page last updated at 06:52 GMT, Monday, 29 December 2008

Laughs, but no joke for 'shakers'

John and Sue Day
John and Sue Day are fighting for the introduction of a specialist Parkinson's nurse in their home area of north Powys

By Carl Yapp
BBC News

John and Sue Day jokingly refer to themselves as the "shakers".

It is the physical sign that is one of the most recognisable symptoms of Parkinson's disease.

But they can now add "incredibly rare" to their nickname, because according to experts they are one of only a handful of married couples who both have the condition.

Parkinson's attacks the part of the brain that controls our movements, and affects activities we take for granted, such as talking, walking, swallowing and writing.

Repetitive shaking, known to sufferers as tremors, slowness of movement, muscle stiffness, insomnia and lethargy are just some of the symptoms.

In recent years awareness has increased about Parkinson's as a result of the likes of boxing legend Muhammad Ali and Hollywood actor Michael J Fox both acquiring the condition.

Mr and Mrs Day, who have three grown-up children, and are from the Powys village of Bwlch y Fridd, near Newtown, have lived with Parkinson's for the past few years.

We're determined not to let it stop us doing things
John Day

They have learned to cope with it, and they say humour is one way of dealing with the debilitating effects.

But it hasn't been easy and humour was the last thing on Mr Day's mind when he was diagnosed in 2005, three years after his wife.

Unlike most people confronted with a disease, Mr Day, 59, knew some of the symptoms as not only his wife had the illness, but his brother, and his father before his death.

"We've heard of brothers and sisters, but not husband and wife. It's very unusual for husband and wife to have it," he said.

"I think people think shaking is the only symptom really and don't realise the fatigue that comes with it and the other things - stiffness of joints and things like that."

Mrs Day, 63, said: "There's also your facial expressions. You don't express emotions - smiling, anger, things like that because the muscles don't respond."

Mr Day said the blank expressions must look quite threatening at times to people, but he joked that nobody had "punched him under the chin yet".

Boxing great Muhammad Ali and Hollywood actor Michael J Fox pictured in 2000
Muhammad Ali and Michael J Fox both have Parkinson's

Mrs Day added: "We're very, very slow to do things. It takes me a couple of hours to do an hour's worth of ironing.

"It's about six years ago (when I started having symptoms). I didn't take much notice at first - I just thought the symptoms were the natural signs of ageing really.

"It wasn't until I was finding a lot of difficulty in work that I thought I'd better go to the doctor."

The effects of the disease described by the Days forced them to retire from their jobs as a marketing officer and infant teacher respectively, while Mr Day was also a special police constable.

The Parkinson's Disease Society (PDS) said the Days' situation was "incredibly rare".

Dr Kieran Breen, director of research and development at PDS said: "One in 500 people will develop Parkinson's, which means that there is a very small chance of two people who live together both having the condition.

"Therefore, though it is possible for a husband and wife to have Parkinson's, it is also incredibly rare."

Dr Breen said evidence suggested Parkinson's was caused by a combination of "genetic susceptibility and environmental factors".

He added: "However, as the exact cause of Parkinson's is still not known, it would be impossible to speculate how and why two people living together both developed the condition.

"Research is ongoing in order to gain a greater understanding of the factors associated with the cause of Parkinson's disease."

John and Sue Day with Joyce Watson AM at the Senedd (picture: Parkinson's Disease Society)
John and Sue Day with Joyce Watson AM at the Welsh assembly

PDS spent more than 4m in 2007 investigating the cause, treatment and potential treatments for the condition.

Despite their suffering and obvious health problems, the Days claimed they were lucky to have such supportive family and friends.

But they said other sufferers were not as fortunate and that was why they were campaigning, along with the PDS group in Montgomeryshire, for a specialist nurse for north Powys.

PDS said about 6,000 people lived with Parkinson's in Wales, yet there were only 11 specialist nurses to support them all.

In Powys, there is one nurse for 260 people with the disease, but she covers the south of the county.

Mr Day said: "We feel there's quite a lack of nurse specialists, particularly in north Montgomeryshire. In other parts of the country they can get a visit from a nurse to their home that helps support their relations."

Mrs Day added: ""We're very lucky because we're both still driving, but you have to have a re-test every three years and there are some people who can't drive now so for them it's very difficult."

Parkinson's disease nurse specialists are fantastic for patients
PDS manager for Wales Simon Hatch

They have taken their fight to the Welsh assembly, and have been supported by their local AM Mick Bates and Mid and West Wales AM Joyce Watson.

PDS manager for Wales Simon Hatch said: "There is an urgent need to improve services so that everyone gets the expert help they need when they need it.

"Parkinson's disease nurse specialists are fantastic for patients, but many areas in Wales do not have a specialist nurse service for people with the condition, or they are heavily oversubscribed.

"The PDS will fund the first two years of every new post, so we want health providers across Wales to engage with us now to redesign their Parkinson's services and introduce Parkinson's disease nurse specialist posts."

Julie Havard Evans of Powys Local Health Board said chronic conditions - like Parkinson's - were a "top priority".

She added: "Patients with Parkinson's often have very complex needs so it's very important that specialist nurses have the support of a consultant.

"This has been more difficult in the north of the county, but we're already working with the Parkinson's Disease Society to find a solution for Mr and Mrs Day and for other patients in the north of Powys."

The Welsh Assembly Government said: "The Welsh neuroscience review acknowledges the key role that specialist nurses have in the provision of neurological services and the recommendation relating to nurse specialist will be considered as part of the implementation process."

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