Pat sings out for sufferers (From Bradford Telegraph and Argus)

The chorister raising funds for a cause close to her heart

8:49am Tuesday 20th December 2011 in Health Features By Sally Clifford

As a chorister, Pat Owen has sung at home and overseas, but her recent performance in front of her family was particularly poignant.

For there in the audience, among her family and friends, was the person she had organised the fundraising concert for – her husband Chris.

The couple met when they were 15 and enjoyed 43 years of married life together, raising three sons and a daughter. They have 12 grandchildren and, although they separated some years ago, they remain friends, bound by the love of their family.

“You have that connection of all those years knowing each other and sharing your family,” says Pat, from Steeton.

Two years ago, aged 66, Chris, a former heavy goods mechanic, was struck down with a rare disease, Progressive Supranuclear Palsy (PSP).

Pat’s impetus for organising the recent choral concert at Christchurch in Skipton was to raise awareness and much-needed funds for research into PSP, a degenerative condition that destroys nerve cells in the brain. It affects up to 10,000 people in the UK.

The condition causes increased disability with loss of balance, mobility, vision, speech and the ability to swallow.

Pat’s initial inclination that something was wrong with Chris began with little things, such as accidents and falling over. More noticeably his voice changed, becoming deeper and hoarse.

Pat wondered whether it was something neurological. Her concerns were confirmed when a neurologist diagnosed Chris with PSP.

She says the family was relieved to finally found out what was wrong with Chris, but they were also upset.

“I don’t think I go to bed at night without thinking about it in one way or another,” says Pat, a retired export manager with a Silsden mill.

Chris is now living in residential care and Pat says she can’t thank their strong support network enough for sharing his care.

There is no treatment and no cure for the disease, but the PSP Association, a small charity set up in 1994, is working to ensure that patients and their carers receive the information and support they need to cope.

The charity has already invested more than £2.5m into high-quality research in the UK and internationally, resulting in a clearer understanding of the pathology of the disease and how widely it occurs. The ultimate aim is to find an effective treatment and, eventually, a cure.

This autumn the charity launched its £1 Million Research Fund to raise the money needed to promote and fund more research and encourage more researchers to develop their interest in the disease. The appeal is supported by Olympian Lord Sebastian Coe, whose mother had PSP.

The charity also works with partner organisations across the world sharing and disseminating information on best practice in care and support and encouraging a collaborative approach to research.

Pat, who sings with the Keighley-based KVU Singers, hopes the choir’s recent efforts, along with the Bradford Boys and Bradford Girls Choir who performed at the concert, will go towards funding vital research needed into the disease.

“With Gift Aid we raised £800, we had some cash donations as well from family and friends. Every little helps and it’s also about awareness and spreading the word,” says Pat.

She has been singing since she was at school but has found it particularly therapeutic since Chris’s diagnosis.

“I absolutely love it. It takes away all your worries, they just disappear when I am singing, concentrating on the lovely music and the friendship with all my colleagues in the choir,” she says. “That is the other side of my life and it helps me to survive and gives me the strength to cope with other things.”

The PSP Association is currently looking at setting up a support group in Bradford and is seeking volunteers to help out.

The charity offers literature, information packs and DVDs for people with PSP, their families and carers as well as for GPs, therapists and other health professionals.

Information and advice is also available through the website, pspeur.org and on (01327) 322410.