'We don't make too many plans': Wife opens up on husband's tragic diagnosis at 51
PUBLISHED: 06:00 21 August 2019 | UPDATED: 10:07 21 August 2019
Jamie Honeywood Archant Norwich Norfolk
Your 50s should be the time of life when you start making more time for yourself and planning for retirement.
But for Nigel Allen, forward planning has become a luxury after he was diagnosed with motor neurone disease (MND).
Mr Allen, 53, and his wife Mandy are still adjusting to the changes the diagnosis has brought to their life - but it has also brought a determination to raise awareness and funds for organisations supporting those with the degenerative illness.
Mrs Allen, 52, said: "We felt we had to take this horrible negative and make something positive out of it.
"We got a lot of support from the MND Association and we felt we wanted to put a bit of that back as well.
"We have spent a year getting our heads around the news. There have been a lot of life changes. The emotional side of it for him is a real rollercoaster as well."
She added: "If you have cancer or something there is a glimmer of hope, there may be light at the other side, but with this illness it is just a deterioration for however long it has its grip on you."
The Gorleston couple had been married for just 11 months when Mr Allen was diagnosed in May 2017, following symptoms including a lack of inhibition and involuntary tongue movements and a 15-week wait for multiple test results.
"This is a bloke who doesn't even take a paracetamol," said Mrs Allen. "It was devastating to Nigel."
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Life has changed dramatically for the Allens in the time since. In January 2018 they were forced to move out of their rented property and find a new home, and Mrs Allen has had to give up her job managing a recycling yard to support her husband.
Mr Allen, who now uses a feeding tube and a crutch and has also developed a form of dementia, is soon due to retire from his job as assistant manager at Hayden's Joinery after 14 years.
"He is still very much here and doesn't think negatively about it. He doesn't even really want to give up work," Mrs Allen said.
"It is no good always looking back and thinking, we were going to do this; now we live each week and month as it comes. We were thinking about moving abroad once we had both retired but we won't be able to do that now.
"We don't make too many plans, but we do intend to have a few holidays once Nigel retires."
Mr Allen's family have a genetic predisposition towards the disease - his mother, two aunts and an uncle have died from it, and Mrs Allen said there is a chance his two children and grandchildren could also develop it.
"It is a cloud that hangs over his mum's side of the family and it is something that will not go away," she said.
To support charities such as the Motor Neurone Disease Association, Mr and Mrs Allen are hoping to organise a series of fundraising events.
Their first will be a charity clothes sale at the Magdalen Way Methodist Church in Gorleston on August 31, with tea, coffee and homemade cakes and a tombola.
The couple - who have nicknamed themselves and fellow organisers Team Allen - are also in the process of planning a Christmas fundraiser.