‘Just because I have a terminal illness, it doesn’t mean my life is over’

Dr John Steadman, archivist of Portsmouth History Centre based at Portsmouth Central Library     Picture:  Malcolm Wells

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Ashley Morgan is eloquent, funny and clearly loves to talk.

But the 55-year-old mum – excitedly revealing big plans for her next birthday – doesn’t know how long she’ll be able to chat like this.

Ashley Morgan at home in Gosport.  Picture: Paul Jacobs (132242-2)

Ashley Morgan at home in Gosport. Picture: Paul Jacobs (132242-2)

Ashley has no idea whether she’ll be able to use her hands for everyday tasks, live independently or even eat normally in a year’s time. So it seems remarkable that she considers herself very lucky and is planning a big celebration to mark 10 years of living with motor neurone disease.

MND is a devastating terminal disease that leads to loss of mobility and can leave people struggling to talk, swallow and eventually breathe.

The progressive disease attacks the motor neurones, or nerves, in the brain and spinal cord. This means messages stop reaching muscles, leading to weakness and wasting.

Ashley, who uses a wheelchair but is able to happily chat away, enjoys meals out with friends and is still working and supporting herself, has defied expectations.

Diagnosed just after her 45th birthday, she says: ‘I’m celebrating a very special birthday this year; 10 years of surviving MND.

‘It might seem strange to be celebrating having a terminal disease but half of the people with MND die within 14 months of diagnosis, so I really am one of the lucky ones.

‘I’m still alive and still fighting! Just because I have a terminal illness doesn’t mean my life is already over.’

Ashley’s form of the disease progresses more slowly than others, but a decade ago she was only expected to live for between five and 10 years.

Everyone with the disease is affected differently and Ashley knows she’s fortunate compared with others. But the Gosport mum also wonders if a positive attitude and determination has gone a long way.

‘Is there a reason why? I don’t know. Could it be that I keep going and force myself to do things?’ she ponders.

‘I’m trying to be busy, living my life. But it would be very easy to give up and get depressed.

‘When that happens it’s a slippery slope. You can quite literally lose the will to live.’

Sat in her office at home – she works as a commercial agent for Farnborough Air Science Trust – Ashley even sees the funny side.

When she was diagnosed, she decided to make the most of eating well because she didn’t know whether she would be able to swallow solid food, or indeed how long she had left to live.

‘Well I never thought I’d be here in 10 years, so I’ve put on about three stone in weight,’ she laughs.

Ashley has lost the mobility in her lower legs and in the past year has started to feel the effects in her hands.But she’s loving her work – finding archive aviation footage for documentary makers including the BBC – and volunteering at Gosport Citizens Advice Bureau.

She enjoys meals with friends and especially loves going to see her musician son Rhys’s blues and roots band Grizzly and the Grasshoppers.

Rhys, 21, has written songs for his mum and Ashley loves hearing them.

One of them, In Your Name, contains the lyrics ‘Hold on, don’t fade away, I’ll see you again some day.’

Ashley says: ‘I get choked just talking about it.’ But she also takes it as an encouraging sign that Rhys is accepting her illness.

‘I think sometimes people who know me have the wrong impression of MND because of how I am.

‘Rhys has often said “you’ll be fine mum, you’ll beat this.’’ Well, no I won’t.’

She doesn’t know whether progress of the disease will continue at its slow pace or speed up. She has no idea whether she’ll develop symptoms such as loss of speech as every MND patient is different.

Characteristically, she jokes about this. ‘People will probably be relieved that I’ve finally shut up.’

But she’s determined to live for today. Ashley and Rhys love going to Stokes Bay and are looking for an easy spot to carry her into the water.

She also still swims regularly in a pool, determined to improve muscle strength.

‘I like to say that I’m not someone who’s dying of MND, I’m someone who’s living with it.’

Ashley hasn’t always felt that way. She recalls receiving her initial diagnosis, when she didn’t think she would live for two years.

‘I remember hobbling out of the hospital crying hysterically. My former partner was saying “what is it?” and I screamed “it’s a death sentence and the ones who die are the lucky ones because it’s so hideous.’’’

Every day Ashley would cry in the shower so her family couldn’t see the tears. Then she received counselling.

‘It made the difference between being able to live with it and not. Eventually things changed in a big way.

‘MND taught me how precious life is and made me a better friend. I know how important friends are.’

Ashley decided to raise money for charity by walking 225 yards to her local pub, helped by Rhys and 60 friends. She also campaigns, delivers speeches and is a poster girl for the Motor Neurone Disease Association.

Ashley explains: ‘I feel very lucky that I can give a voice to those people who can’t speak any more.’

But she does consider own future and admits that the thing she worries about most is losing the will to live.

Ashley has been asked to give her opinion on legalised assisted suicide and is against the idea because of the responsibility it places on friends and relatives.

But she totally emphasises with people who require round-the-clock care and says: ‘I don’t know how I’d feel in that situation.’

Right now, though Ashley is determined to inspire people with a positive image of those living with MND and continue doing all she can to support others. Plus she has a big fundraising birthday party to arrange and is far to busy to ever feel down.

MOTOR NEURONE DISEASE

Motor neurone disease attacks the motor neurones that send messages from the brain to the muscles, leaving people unable to walk, talk or feed themselves.

The cause of the disease is unknown and there is no known cure. Around 5,000 people in the UK have MND at any one time, with half of people with the disease dying within 14 months.

Perhaps the most famous person to be diagnosed with MND is Professor Stephen Hawking. He is an extremely unusual case, having lived with the disease for 50 years.

The MND Association funds and promotes research and supports patients and carers. Visit mnd

association.org or call (08457) 626262.

Ashley Morgan will be guest of honour at the Portsmouth and East Hants MND Group Walk to d’Feet fundraising event at Manor Farm, Bursledon on September 15,

For information about the group, call (07918) 652201.