Dad, 67, says 'nothing will replace' life he has lost to MND but he has one hope
The Mirror spoke to Steve Gibson, who has MND, and Liz Poole, whose dad Bob died from lung cancer - they are both in favour of legalising assisted dying due to their experiences
A man with motor neurone disease has said 'nothing will replace' the life he has already lost but pleaded with MPs to give him the choice of an assisted death if his pain becomes unbearable.
Steve Gibson, 67, from south London, said it would be 'extremely selfish' for politicians to vote against legalising assisted dying as it is not them who are suffering. The dad-of-five, who was diagnosed with MND in 2023, has good days and bad days, sometimes having to lean on a family member or using a stick when he's walking.
Steve, who previously worked in transport logistics, teared up as he spoke about how tough it was to think about the future, saying he had already been deteriorating. 'I miss my work, my hobbies. I love my motorbikes. All that stops and it literally just does exactly that. It stops,' he said. 'So you then try and think of, what else can I do to replace that? And there is nothing, nothing will replace that.'
Steve, who has 11 grandchildren, said he doesn't want to have to suffer when his illness gets worse, adding: 'I don't want that for any of my family. It's pretty disgusting what you go through with MND. I don't want somebody to change my nappy. How degrading is that for the person that's got to do it, and for me?'
He continued: 'I hope that assisted dying will be in place. I really do. Look, no one wants to suffer. You know, you can be the bravest, biggest guy in the world, no one wants to suffer.
'I don't want to suffer any more than I do now some days. But this, whatever happens to me at the moment, will happen multiple times. It will increase. It will multiply hugely as we move forward.'
Asked what he thinks about the possibility of MPs not voting to legalise assisted dying, Steve added: 'In a way, I think it's extremely selfish of them. They're not the people that are suffering. Their families aren't the families that are suffering. They're making choices. They're elected. Let's do it right.'
'My dad wanted to die - he hated his life so much'
A woman has said it would be 'criminal' for MPs to reject a bid to change the law on assisted dying. Liz Poole, 47, from Henley, watched her dad Bob suffer in pain until his death at 82 from lung cancer in 2022.
Former chemistry teacher Bob tried to take his own life by overdosing on painkillers, during which he fell and broke his hip, which caused further pain and suffering.
He had considered going to Switzerland's assisted dying organisation Dignitas but it was 'hideously expensive', Liz said.
'He eventually became housebound. He was sort of moving around using a trolley," she said. "He actually started drinking quite heavily. I think he was just trying to blot everything out, because he just hated his life so much.
'And then he started telling us all that he just wanted to die, and he hated it, and obviously there was nothing we could do. We had great palliative care but there's only so much they can do.
'I think just everything got so much for him… He took an overdose of Oramorph, which was the painkiller that he had. We found him on the floor. He'd pulled himself under the bed, trying to hide, just hoping that he'd die before we found him.'
Liz's mum found him first and when she later arrived she found her dad 'screaming' out in pain. Bob survived the overdose and died some time later in an assisted home, where he stopped eating and "wasted away' to five and a half stone.
Liz choked up as she said her dad was on his own when he died. 'He just looked horrific all the time. We were not expecting him to go then," she said. 'That's just not how we wanted him to go. All of this could have been his choosing and he could have gone in a way where he would've had dignity.
"If (the bill) doesn't go through, it will be devastating for not just people who are ill now, but people who potentially may get ill in the future.'
Liz added that her dad dedicated his life to public service, teaching in Africa where he helped to build a school, and volunteering after his retirement. "He was just a good member of society and it would be really disappointing if we couldn't get this through and honour that," she said.
:: Contact the Samaritans for mental health support on 116 123, email at josamaritans.org or visit samaritans.org to find your nearest branch.
Try Our AI Features
Explore what Daily8 AI can do for you:
Comments
No comments yet...
Related Articles
Daily Mirror
3 hours ago
- Daily Mirror
'I was told cramp in my hand was stress, now I need carers multiple times a day'
A mum who first noticed cramps in her hands five years ago is now planning to starve herself to death after being diagnosed with motor neurone disease, to protect her kids from the brutal death she faces A mum has revealed how she was diagnosed with a deadly disease after first noticing cramps in her hands - which she was initially told was just stress. Emma Bray, 42, has motor neurone disease. And she has now made the the heart-aching decision to starve herself to death when her daughter's exams have finished, determined to shield her 'amazing' children, aged 15 and 14, from the 'brutal' death she faces. The former charity worker, who has helped hundreds of domestic abuse victims and the homeless during her career, plans to move into a hospice this summer and voluntarily stop eating and drinking. When she was given the bleak diagnosis two years ago, she was left 'howling like an animal' because she realised the impact it would have on her son and daughter. 'I've had four different health professionals tell me I've got the worst disease possible,' she told the Mirror. MND is a terminal neurological condition that affects the brain and spinal cord leading to muscle weakness and wasting. Now after going on a 'bucket list holiday' to the Maldives and having an 'End of Life Party,' she has decided the time has nearly come to do her 'last bit of parenting' and spare them the horror of seeing their mum suddenly choke to death. Instead she wants a 'calm and peaceful death' and has already planned her funeral and written her eulogy. Talking to the Mirror through her eye gazing machine, she said: 'I now feel I am at the stage where my quality of life is very affected, I can no longer use any of my limbs. My talking is severely affected and I struggle to eat and it's getting harder to breathe. I am only really comfortable in bed and social visits are exhausting. 'I have carers multiple times a day, can't be left alone overnight and can no longer do any basic tasks. I can't scratch an itch, push up my glasses, move a bed sheet if I am too hot or cold. I feel like I am losing the essence of me, I am still so loved but I can't be myself and I see that grief on everyone's faces. 'This whole journey has been brutal but I have still been able to be a parent and I now realise I can't be a bit of the parent I need and want to be. Watching your children grieve you and not be able to hug them is the most painful feeling ever. This disease takes from everyone and it will take the children's mother from them bit by bit. 'My last bit of parenting I can do is to limit the suffering and trauma they have to witness. I made a promise to myself that I wanted to wait to see my daughter finish high school and my son grow up a little so I can picture the man he will become. 'So this summer I will voluntarily stop eating and drinking when I feel ready and I will be supported by a hospice to be comfortable during this time.' Emma has decided to die using the Voluntarily stopping eating and drinking (VSED) practice. According to Compassion in Dying this is where an adult 'with mental capacity to decide to do so and in the absence of control or coercion', makes a decision to hasten their death by completely stopping all food and fluids. They say dying from VSED can typically take between 10 to 14 days. Emma told us: 'VSED is not an easy death but with the current law in England this is the only way I can have control over my death. 'I want to protect my children from seeing me choke and struggle to breathe. I don't want to die but I am going to and have come to terms with my impending death and I know I want to die surrounded by loved ones, music and laughter not in an emergency way after further decline.' Emma, from Barnstaple in North Devon, is backing the Assisted Dying Bill because she wants other families to avoid the horrifying decisions she's had to make between two 'painful and potentially horrific' ways to die. She said: 'This bill will have offered me protection for those I love who have already spent two years living with anticipatory grief and watching me suffer. Imagine seeing your children crying and upset and not be able to hug them or curl up in bed and wipe their tears away. This is hands down the thing I hate the most about motor neurone disease. It's taken my children's mum from them little by little. 'They struggle to remember the mum I once was and we all silently agree, as sad as it will be, life will be easier for them when I'm dead.' Emma explained how five years ago she started having cramps in her hand which prompted a three year battle to find a reason. Finally in July 2023 when she was walking with aids, crawling up stairs and unable to drive, she received the 'devastating diagnosis' she had MND. 'I had been told my symptoms were all to do with stress for years and that I would get better. I went to a private neuro rehab in Leeds who instantly told me that it was something more serious,' she told us. 'I then did some research and became fixated on MND as it matched all my symptoms. Going into the consultant appointment MND was the worst case scenario and to hear him say that's what it was was crushing. I remember howling like an animal when I realised the impact it would have on the children. 'My best friend was in the appointment with me and as we left I said that I wish it was cancer because there would have been potential surgery or treatments, with MND there is nothing.' Emma explained how she decided 'straight away that I wanted quality over quantity' as her consultant advised her to live while she could because the 'ending will be very hard'.' And she has done just that and still managed to raise £30,000 with family and friends for charity. But now she says: 'My end of life wish is to be at the hospice surrounded by my friends and family. I want to have music playing, to hear people laugh and watch them playing card games over me.' Emma paid tribute to her children, saying: 'My children are amazing and have spent so much of their childhood witnessing me decline. 'They watched me crawl around the floor for a year before diagnosis, they help me with everything as I have no working limbs, they live in an environment where there is a constant flow of carers coming into our home. 'They are obviously struggling. They struggle watching me fade, they are already grieving for the mum I once was. How they are still attending school and laughing astounds me and is a credit to what amazing people they are. 'They have a village of people around them but I know they desperately miss me. They are living in limbo land, they know they will have to move house to live with their dad but they don't know when and that uncertainty is hard for them. 'I can see their pain and grief on a daily basis and I would do anything to take that away from them. They are desperate for a hug from me and that hasn't happened in years. Emma said she is now noticing 'a decline every day', adding: 'Its becoming harder to take full breaths, my appetite is small and I struggle to not choke. I hide these symptoms as much as possible so people are sheltered from my reality. 'I plan to stop eating and drinking this summer, my reasoning behind this is to offer the children the best chance to grieve and process without having to concentrate on education. There is never a good time to lose your mum but all my maternal instincts want to make that horrible reality as easy for them as I can. 'I urge MPs to realise that this bill will not end my life, motor neurone disease is doing that but they can help me and others with less than six months to live to die with peace. ' Emma also wanted to praise the MNDA who have part funded a nurse who has become 'her rock'.
Daily Mirror
3 hours ago
- Daily Mirror
'I was being pushed towards heaven and hell - it was a near death experience'
When a tube train failed to stop and crashed into the tunnel at Moorgate, in London killing 43 people and injuring 74 more in 1975 survivor Javier Gonzalez had what he describes as a near death experience For half a century pensioner Javier Gonzalez has believed he is one of the luckiest men alive - after surviving the Moorgate tube crash that killed 43 people and injured 74 others on February 28, 1975. Fifty years ago he sat in the first carriage - which was crushed down from 16 metres long to just 6.1 metres - as it crashed into the wall at 8.46am. It was a miracle he survived and he told The Mirror how he had a near-death experience where he remembers being pushed towards heaven and hell. 'I could see underneath me a valley with a river, trees and people and it felt full of love. I wanted to go there but I also wanted to tell everyone about it,' Javier says, describing the moment when he thinks he had a near death experience. 'The next minute I was being pushed down into a very dark area where I could hear screams, I could smell rotten smells, it was dark and hot. I now know it wasn't what was happening in the tunnel because everyone was either dead or rescued except for me and the two other people, who were trapped who had already passed.' Just after the accident, when people were more sceptical about near death experiences, he says people listened to his story as if he had gone mad. He even heard someone in hospital say, 'poor man, he's gone nuts.' He's since written a book about his experience called A Ticket to Eternity, despite being plagued with medical problems since the accident - including blood clots, a brain tumour and recurring pain in his head. Even neurologists, he says, have not ruled out that his medical issues could be related to the crash. The Moorgate tube crash was the worst peacetime accident on the London Underground, crushing the first carriage, leaving the second folded at the front, as it collided with the first, with the third riding over the rear of the second. Rescuers had to walk over dismembered limbs and dead bodies and a number of people who were decapitated to find survivors. Describing the scene as 'worse than in a horror movie', it took the emergency services 13 hours to remove the injured, many of whom had to be cut free from the wreckage. One rescuer said the front carriage that Javier was sitting in was 'an indescribable tangle of twisted metal' where 'the living and the dead were heaped together, intertwined among themselves and the wreckage.. writhing in agony.' Javier was trapped there for five hours and is now thankful he passed out, as he didn't have to witness the horrific carnage around him. The next thing he remembers was being pulled to safety. 'A man asked if I could move and when I replied that I couldn't, he told me to cover my face as he pulled me out of the wreckage,' he says. 'I was slipping in and out of consciousness and I remember someone injecting something into my hand." What happened next will stay with him for a lifetime. 'I didn't gain full consciousness until the following morning, the Saturday when I woke up in intensive care at St Bartholomew's Hospital with splatters of other people's blood on my clothes, covered in soot and with bits of broken glass in my hair. There was a nurse standing next to me and after asking me how I was feeling she passed me a newspaper. I remember there were images of the accident and my name was on the front page. 'I had amnesia and was confused and I was reading about an accident that was being described as worse than a warzone or a horror movie. Then I just remember feeling really thankful that God had not let me see it.' Javier's hip was fractured into 100 pieces and he had to have a steel rod inserted inside his leg. For the next six months, he relied on crutches to walk, but he considers himself one of the lucky ones. And he was not left traumatised about using the tube, as he knew the chances of anyone having a second accident on the underground like that were extremely unlikely. The near death experience has also left him unafraid of dying. No fault was found with the train after an investigation. The brakes were not applied, and the dead man's handle was still depressed when it crashed. The inquiry by the Department of the Environment concluded that the accident was caused by the actions of Leslie Newson, the 56-year-old driver.
Daily Mirror
4 hours ago
- Daily Mirror
'I'm starving myself to death so my kids don't see brutal disease claim my life'
A mum is planning to starve herself to protect her 'amazing' children, aged 14 and 15, from seeing her 'brutal' death from motor neurone disease after her diagnosis two years ago A remarkable mum has just weeks to live after making the heart-aching decision to starve herself to death when her daughter's exams have finished. Emma Bray, 42, who has motor neurone disease, plans to move into a hospice this summer and voluntarily stop eating and drinking. The former charity worker, who has helped hundreds of domestic abuse victims and the homeless during her career, is determined to shield her 'amazing' children, aged 15 and 14, from the 'brutal' death she faces. She told how she can no longer even comfort her children with the hugs they crave. When she was given the bleak diagnosis two years ago, she was left 'howling like an animal' because she realised the impact it would have on her son and daughter. 'I've had four different health professionals tell me I've got the worst disease possible,' she told the Mirror. MND is a terminal neurological condition that affects the brain and spinal cord leading to muscle weakness and wasting. Now after going on a 'bucket list holiday' to the Maldives and having an 'End of Life Party,' she has decided the time has nearly come to do her 'last bit of parenting' and spare them the horror of seeing their mum suddenly choke to death. Instead she wants a 'calm and peaceful death' and has already planned her funeral and written her eulogy. Talking to the Mirror through her eye gazing machine, she said: 'I now feel I am at the stage where my quality of life is very affected, I can no longer use any of my limbs. My talking is severely affected and I struggle to eat and it's getting harder to breathe. I am only really comfortable in bed and social visits are exhausting. 'I have carers multiple times a day, can't be left alone overnight and can no longer do any basic tasks. I can't scratch an itch, push up my glasses, move a bed sheet if I am too hot or cold. I feel like I am losing the essence of me, I am still so loved but I can't be myself and I see that grief on everyone's faces. 'This whole journey has been brutal but I have still been able to be a parent and I now realise I can't be a bit of the parent I need and want to be. Watching your children grieve you and not be able to hug them is the most painful feeling ever. This disease takes from everyone and it will take the children's mother from them bit by bit. 'My last bit of parenting I can do is to limit the suffering and trauma they have to witness. I made a promise to myself that I wanted to wait to see my daughter finish high school and my son grow up a little so I can picture the man he will become. 'So this summer I will voluntarily stop eating and drinking when I feel ready and I will be supported by a hospice to be comfortable during this time.' Emma has decided to die using the Voluntarily stopping eating and drinking (VSED) practice. According to Compassion in Dying this is where an adult 'with mental capacity to decide to do so and in the absence of control or coercion', makes a decision to hasten their death by completely stopping all food and fluids. They say dying from VSED can typically take between 10 to 14 days. Emma told us: 'VSED is not an easy death but with the current law in England this is the only way I can have control over my death. 'I want to protect my children from seeing me choke and struggle to breathe. I don't want to die but I am going to and have come to terms with my impending death and I know I want to die surrounded by loved ones, music and laughter not in an emergency way after further decline.' Emma, from Barnstaple in North Devon, is backing the Assisted Dying Bill because she wants other families to avoid the horrifying decisions she's had to make between two 'painful and potentially horrific' ways to die. She said: 'This bill will have offered me protection for those I love who have already spent two years living with anticipatory grief and watching me suffer. Imagine seeing your children crying and upset and not be able to hug them or curl up in bed and wipe their tears away. This is hands down the thing I hate the most about motor neurone disease. It's taken my children's mum from them little by little. 'They struggle to remember the mum I once was and we all silently agree, as sad as it will be, life will be easier for them when I'm dead.' Emma explained how five years ago she started having cramps in her hand which prompted a three year battle to find a reason. Finally in July 2023 when she was walking with aids, crawling up stairs and unable to drive, she received the 'devastating diagnosis' she had MND. 'I had been told my symptoms were all to do with stress for years and that I would get better. I went to a private neuro rehab in Leeds who instantly told me that it was something more serious,' she told us. 'I then did some research and became fixated on MND as it matched all my symptoms. Going into the consultant appointment MND was the worst case scenario and to hear him say that's what it was was crushing. I remember howling like an animal when I realised the impact it would have on the children. 'My best friend was in the appointment with me and as we left I said that I wish it was cancer because there would have been potential surgery or treatments, with MND there is nothing.' Emma explained how she decided 'straight away that I wanted quality over quantity' as her consultant advised her to live while she could because the 'ending will be very hard'.' And she has done just that and still managed to raise £30,000 with family and friends for charity. But now she says: 'My end of life wish is to be at the hospice surrounded by my friends and family. I want to have music playing, to hear people laugh and watch them playing card games over me.' Emma paid tribute to her children, saying: 'My children are amazing and have spent so much of their childhood witnessing me decline. 'They watched me crawl around the floor for a year before diagnosis, they help me with everything as I have no working limbs, they live in an environment where there is a constant flow of carers coming into our home. 'They are obviously struggling. They struggle watching me fade, they are already grieving for the mum I once was. How they are still attending school and laughing astounds me and is a credit to what amazing people they are. 'They have a village of people around them but I know they desperately miss me. They are living in limbo land, they know they will have to move house to live with their dad but they don't know when and that uncertainty is hard for them. 'I can see their pain and grief on a daily basis and I would do anything to take that away from them. They are desperate for a hug from me and that hasn't happened in years. Emma said she is now noticing 'a decline every day', adding: 'Its becoming harder to take full breaths, my appetite is small and I struggle to not choke. I hide these symptoms as much as possible so people are sheltered from my reality. 'I plan to stop eating and drinking this summer, my reasoning behind this is to offer the children the best chance to grieve and process without having to concentrate on education. There is never a good time to lose your mum but all my maternal instincts want to make that horrible reality as easy for them as I can. 'I urge MPs to realise that this bill will not end my life, motor neurone disease is doing that but they can help me and others with less than six months to live to die with peace. ' Emma also wanted to praise the MNDA who have part funded a nurse who has become 'her rock'.
