'Love and a sense of humour see us cope' - Couple living with MND tell story during carers week
"I married him for his good looks and wicked sense of humour - that hasn't changed!" are the words of Lynne Hawkins who cares for her husband Peter who has motor neurone disease (MND).
Peter, aged 60, who was PE teacher at Aldersley High School in Wolverhampton for 29 years, was first diagnosed with MND in 2003.
He had initially thought that the muscle twitches were to do with a long-standing bad back. Peter continued to teach at the school for four years, until in 2007 when he retired due to problems with his speech.
MND is a fatal, often rapidly progressing disease that affects the brain and spinal cord.
It attacks the nerves that control movement so muscles no longer work.
It can leave people locked in a failing body, unable to move, talk and eventually breathe.
Six people per day are diagnosed with MND in the UK.
It kills a third of people within a year of diagnosis.
Unusually, Peter has had the condition for 14 years and is still cared for full time by Lynne, aged 59, also a former PE teacher at Newbridge Preparatory School.
The pair have spoken out about their experiences of living with MND and what it means to care for someone with the condition.
Lynne said: "The alarm goes off at 7am. Most days, we head up to bed at midnight - we've always been night owls.
"You sleep with one eye open really all night to make sure he's okay and roll him over if he needs to be rolled. We don't get much sleep.
"Then at 7am we get up, I wash and change Peter and get him downstairs for breakfast. That can take us to 11am by the time we've done everything that needs doing.
"After that we take each day as it comes really. Peter has all his nutrients fed direct into his stomach through a permanent tube, so that means we can’t go out to eat anymore, but we enjoy sitting in the garden or watching the TV."
It is hoped that by speaking out, they will raise awareness of MND and also of National Carers Week which runs from June 12 to 18.
Peter is able to communicate through a special tablet that connects to a head mouse placed on his glasses.
Using the mouse, he is able to identify the words he wants to speak and the machine speaks them for him.
He is also able to spell out letters of the alphabet with his right foot to give Lynne a clue as to what he wants to say.
"At first," Lynne said, "You are grieving for the fact that things are about to change. That life as you know it now will be unrecognisable in the future.
"We've been lucky in a way that Peter's condition has been very slow to deteriorate, meaning that we have been able to get used to the changes in his mobility and speech gradually."
However, the condition does not affect the senses and Peter often finds it frustrating that people assume he is hard of hearing or cannot understand them.
Lynne said: "Whenever we are out and people see him in the wheelchair, they always speak incredibly loudly and slowly as if Peter can't understand but he can!"
The condition does not stop the couple from pursuing the things they both love.
"We are going to Ibiza next month with friends" Lynne explains.
"Even though Peter can't play football anymore, we do still watch a lot of sport on the TV and we have a lot of visitors streaming in and out of the house a lot of the time too."
Lynne cares for Peter on her own without help from external carers.
"You just get on with it" Lynne said. Her advice for other carers or those with MND is: "With a positive attitude and a good sense of humour you can get through anything.
"I married him for his good looks and wicked sense of humour - that hasn't changed! Remember that you are still the same people and that ultimately you still have each other."
The biggest challenge to the pair is, however, when Lynne falls ill.
Lynne explains: "For example, Peter had said I better go out and trim the hedges in the garden. I was standing on a step ladder that decided to slip from beneath me. Thankfully, I was able to throw the mechanised shears out of the way, but I landed and gashed my shin quite badly.
"I looked up and Peter was laughing at me! I said, you may laugh, but if I'd have broken my leg it would have been a different story."
The couple, who have three children - Gareth, 32, Claire, 30 and Matthew 28, both regularly attend the support group run locally by the MND Association and also share their experiences to help others.
Lynne added: "We just want people to realise how valuable it is caring for someone and to appreciate the work that it takes, We keep each other going!"
Chris James, director of external affairs at the MND Association said: "We recognise the huge importance of carers for people living with MND and are proud to support Carers' Week. "For many people the usual rapidity of the disease means that families become carers almost overnight.
"We strive to make sure that carers and people living with MND get the right care and support when they need it. Raising awareness of MND is vital and huge thanks to Lynne and Peter for sharing their story."
The MND Association was founded in 1979 by a group of volunteers with experience of living with or caring for someone with MND.
Today, it represents everyone affected by MND in England, Wales and Northern Ireland focussed on improving care, research and campaigning.
For information on a support group local to you visit the website.
