‘Abseil was a poke in the eye to Parkinson’s really’

Gillian Cuenca of Farlington who has Parkinsons with husband Andy''''Picture: Paul Jacobs  (131320-5)
Gillian Cuenca of Farlington who has Parkinsons with husband Andy''''Picture: Paul Jacobs (131320-5)

LETTER OF THE DAY: Housing - more needs to be done

Have your say

For some it would have been a grimace, but Gill Cuenca was all smiles as she abseiled down the Spinnaker Tower in biting wind and spitting rain.

For Gill it was an exhilarating experience and she relished the support from the cheering crowd 350 feet below.

But it was also a chance to stand up to Parkinson’s – the condition that has attacked her mobility and threatens to rob her of that glorious grin.

The 55-year-old took on the intrepid challenge along with fellow Parkinson’s sufferers and support group members Nigel Ayling, Darice Hutt and Sallyann Sines, as well as family and friends.

She says: ‘Nigel was coming up with ideas to raise money and I said I’d do it without thinking it would actually happen. It seemed ages away.

‘Then suddenly it was on us. But I absolutely loved it. I wouldn’t have thought of doing anything like this before I had Parkinson’s. It was a case of I’ve got this, but I can still abseil. It was a poke in the eye to Parkinson’s really.’

The fact that she grinned her way through the challenge was in itself a reason to be pleased.

Parkinson’s is a progressive neurological condition. Its symptoms are many and varied, but can include a tremor which starts in the hand, slowness of movement, muscle rigidity, pain, speech problems and what is known as the ‘Parkinson’s Mask.’

This is when a patient loses the ability to communicate with facial expressions like smiling.

When Gill was diagnosed in her 40s, the thought of losing her smile caused great distress.

‘I found that really upsetting. As a child everyone would say how lovely my dimples were.

‘I’ve always been a smiley person I suppose, no matter what I’ve been through I’ve never stopped. And I hate the thought of people thinking I’m grumpy or disapproving when I’m not.’

A special needs teacher, Gill worked with autistic children who had problems understanding facial expression, so she was painfully aware of the importance of this form of communication.

But Parkinson’s affects everyone differently and Gill, who may or may not develop the ‘mask’, still smiles as she sits next to husband Andy in their Farlington home.

The couple say they ‘buried their heads in the sand’ when Gill was first diagnosed. But as Parkinson’s has progressed they have faced emotional and practical upheaval.

‘We were at the stage in our lives when we were looking forward to having quality time together,’ says Andy. ‘It should have been our time but we’ve also got to share it with Parkinson’s. We just have to make the adjustments and live as normal a life as we can.

‘We really make the most of everything because we don’t know what is around the corner.’

People with Parkinson’s can have a normal life expectancy but have to deal with increasing disability, and there can be serious complications.

The couple used to love walking in the countryside, but now Gill needs a stick to get around.

When she was first diagnosed her workplace was excellent, offering her all the support she needed.

‘The pupils used to call me Mrs Cuenca with the wobbly hand and seemed to accept the changes. But you need to have quick thinking and lots of energy, it’s a very demanding job. So I took early retirement and it was a relief really. By that time it was becoming hard.’

One of her regrets is not being able to care for her young grandchildren. ‘I’d envisaged being able to look after them. We have them for days and take them out, but I can’t look after them on my own.’

But Gill is receiving plenty of support, and medication keeps symptoms like the tremor under control.

And through it all, she and Andy keep smiling.

Gill giggles when she reveals how she once fell over in Sainsbury’s.

She finds it hilarious when her grandchildren shuffle along behind her mimicking her walk. ‘They don’t mean anything by it,’ she says. ‘They’ve grown up with it and we laugh together a lot.’

And the former art teacher is looking forward to filling her canvases again. ‘I don’t think I’ll be able to do anything with as much detail, or be as precise as I used to,’ she says, to which Andy replies. ‘Maybe you’ll develop a whole new style.’

Gill says keeping a sense of humour is vital and she shares good times – as well as tears – with members of Portsmouth’s Working Age Support Group.

The group offer support for younger people with Parkinson’s and raise awareness. This is important as patients with slurred speech and mobility problems have been mistaken for being drunk and have had problems in shops, on aeroplanes and in social situations.

Members also organise activities like the abseil and Gill is thrilled that she agreed to take part.

‘It was amazing thing to do. It was very tiring but the people at the Spinnaker Tower were extremely supportive. And the support of the crowd made it a wonderful day.’

As for the future, Gill tries to live from day to day. But she does say she might try a sky dive next, before breaking into a cheeky smile.

Parkinson’s factfile

One person in every 500 has Parkinson’s - that’s about 127,000 people in the UK.

Most people diagnosed with the condition are aged 50 or over, but younger people can get it too. One in 20 is under the age of 40.

People with Parkinson’s don’t have enough of a chemical called dopamine because some nerve cells in their brain have died.

Without dopamine people can find that their movements become slower so it takes longer to do things.

The loss of nerve cells in the brain causes the symptoms of Parkinson’s to appear. These vary from person to person but can include tremor, rigidity, tiredness and pain.

There’s currently no cure and it’s not know why people get the condition..

Parkinson’s UK is a national charity offering information, advice and support.Visit parkinsons.org.uk or call the helpline on 0808 800 0303. For the local support group visit parkinsons.org.uk/portsmouth

There is also an information and support officer for the area.

The NHS has a specialist Community Neurology Service, dedicated to care and support. Call (023) 9268 4694.

For the Working Age Support Group, call chairman Nigel Ayling (07837) 370546.

The group are planning a Family Day on August 17 at The Link in Cosham. There will be a farm, fire engine, stalls and information about Parkinson’s. Family entry is £5.