A woman who had to learn to walk again after a brain tumour has completed the virtual London Marathon.
Marie Garnett was diagnosed less than six weeks after giving birth and said goodbye to her husband and newborn daughter Amelia before undergoing three life-saving operations.
During her six-week stay in The Walton Centre in Liverpool, Marie also battled meningitis and discovered she had a Chiari malformation, where the brain pushes down into the spinal cord, and hydrocephalus, a build-up of fluid on the brain, as a result of the golf ball-sized tumour.
The new mum was left needing intensive physiotherapy to regain the ability to walk and continues to live with ongoing effects of her surgery in 2015.
But on Sunday, inspirational Marie completed the virtual London Marathon, running and walking the 26.2 mile distance on a route around her Liverpool home which she completed in seven hours 15 minutes.
Describing herself as going from “couch to marathon in eight months” – during which time she also contracted COVID-19 – Marie’s determination came from the desire to supporting two organisations she credits with saving and helping to rebuild her life – The Walton Centre and The Brain Charity – and to show survivors what is possible.
“I’m still in shock and a bit of denial that I’ve done a marathon. I want to raise money for the two charities who helped me physically and mentally with my recovery, but probably more than that, I do it for people like me,” says Marie, a former civil servant and trained counsellor.
“I had a comment on social media from one person who is in The Walton Centre now who has recently had brain surgery, saying it gives them hope they too might be able to do this one day.
“For people in hospital recovering from anything, I hope they can see what can be possible. You might not get the life back you had, but the life you go on to have might be even better.
“When you Google your condition, which of course you do, there are a lot of really awful negative stories which do make you worry about the future. But I would say to people that while your illness may never go away, I still have health conditions, don’t let it define you in a negative way – although by all means let it definite you in a positive way.”
Marie has been determined to live with a positive and practical outlook since her diagnosis with a brain tumour, which also helped her deal with the news that her daughter Amelia also has a neurological condition.
“There are some things you can’t change, like the fact I have a shunt in my head and have a brain injury, but all of your days can’t be sad because of that – you have to live your life,” says Marie.
“You don’t have a crystal ball, you don’t know what the future holds, so you have to live for today. If you’re worrying about the future, you’re missing out on today.
“I’ve been through the recovery where I had to learn to stand, taking my first step after surgery, holding on to the wall to get to the toilet, building up to 300 steps in a day – it’s a slow process and there is no quick fix.
“It has taken me years to get to this point physically and mentally – but I hope through completing a marathon, I can show that if I can do it, other people can too.”
Having built up to being able to complete the London Marathon through adopting the ‘Jeffing’ technique – a combination of running and walking for long distances – Marie said she exceeded even her own expectations on her time.
“We had a little party at home for me getting back and I said I’d probably take nine hours – but had to call and say I’d be back a couple of hours early,” says Marie.
“I did enjoy it on the day. I listened to podcasts and then motivational music at the end and smiled and sang at the top of my lungs – I did cry a little bit as well. But it was such a positive day, really happy, and I’m so pleased that I’ve done it.”
Tui Benjamin, head of fundraising at The Brain Charity, said: “Marie is an absolute superstar and we are thrilled she chose to support The Brain Charity with her virtual London Marathon.
“Not only has she raised much-needed funds for our front-line services, she is a true inspiration to our clients and to all brain tumour survivors.
“Having learned how to walk again and gone on to complete the famous 26.2 miles of a marathon, she has shown people living with all forms of neurological condition that anything is possible.”
Marie has raised over £1,500 so far for The Walton Centre and The Brain Charity, and is hoping to hit the £2,000 mark.
To support Marie, visit here
‘I’m determined this won’t be the final chapter in my life’
Survivor Adrian Day is looking to the future with hope after having a stroke and being made redundant within a week
Having had a stroke and lost his job within a week, Adrian Day is now committed to showing others there is hope even during the bleakest of times.
The 61-year-old had a stroke in May last year, during the height of the first wave of the COVID-19 pandemic, and only days later was told he would be made redundant.
But after a difficult year, Adrian is now looking to the future after making strong progress in his rehabilitation, and is determined to walk his daughter down the aisle on her wedding day in 2023.
“I’ve never felt depressed, or asked myself, ‘Why me?’ I actually consider myself lucky as haemorrhagic stroke kills more often than not but I’m still around to tell my story,” says Adrian.
“I’m also still here for my wife and daughters and I hope all of that brings inspiration and hope to other stroke survivors.”
It was while at home during COVID lockdown that Adrian began to realise something was not right, when he felt light-headed and could no longer feel his left arm or leg.
His wife noticed a slight droop in his face and called 999, explaining she suspected Adrian was having a stroke.
“The ambulance was on the drive in ten minutes. I was conscious and lucid throughout the stroke and I gave the paramedics as much information as possible on our way to hospital,” recalls Adrian, from Warrington.
A CT scan soon revealed Adrian’s stroke had been caused by a bleed on the brain and he would spend three days in Whiston hospital before being transferred to Warrington hospital.
But just one week after this, Adrian received devastating news about his job as an international development manager.
“On May, exactly one week after my stroke, and still paralysed, my boss emailed me to say that I would be redundant from May 31,” he says.
“The world was at the start of a global pandemic, the UK was in lockdown, I had suffered a stroke, I was paralysed and had just lost my job – I couldn’t believe what was happening.”
But despite two life-changing events in the space of a few days, Adrian has stayed determined in his recovery and getting his life back on track.
He began intensive sessions of physio and occupational therapy, while setting himself the goal of walking out of hospital by his 61st birthday.
Now back at home and continuing his rehabilitation, Adrian wants to show others that there is hope after stroke.
“Whilst I accept that I wont be the person I was before the stroke, I’m determined that it won’t be the final chapter in my life,” he says.
“I want to get another job, I’ve even had a few interviews and I want to drive again too.
“I knew life for me was going to be very different from now on. I was worrying about being unemployed and looking after my family.
Adrian and his family have been supported by The Stroke Association in being able to rebuild their lives.
“The Stroke Association spoke to my wife Carol, drafted a letter to my former employer and put me in touch with Citizens Advice,” says Adrian.
“They also offered me the opportunity to talk. They were sympathetic, they listened, offered advice and it helped, it really did.”
Paralysed opera singer performs again
Through extensive rehab, Naomi Hyamson was able to sing at the British Home summer party and give lessons to other residents
A former opera singer who was paralysed from the neck down has been able to perform again following an extensive rehabilitation programme comprising “therapy, perseverance and hope”.
Naomi Hyamson was a sub-editor at The Times newspaper for 20 years and a semi-professional opera and cabaret singer, but became tetraplegic after developing the degenerative condition cervical myelopathy, which left her barely able to speak.
Having become a resident of British Home, a specialist neuro-disability residential centre in London, her potential for recovery was spotted after she moved a finger in May 2018 while still in hospital.
A tailored rehabilitation programme was then devised to restore nerve pathways and build strength in her lungs and core muscles that had degenerated when she was paralysed.
Naomi went from total paralysis that lasted many months – during which she had two potentially fatal chest infections, caused by her tetraplegia – to gradually regaining the ability to perform a variety of tasks, such as being able to feed herself, move her table, operate a smartphone and iPad, and get into her power-wheelchair with extensive independence.
In 2020, she edited the visitors’ guide to a highly successful exhibition curated by a friend, and the captions for the exhibits, and also edited the press release for the exhibition.
And in a hugely significant achievement for Naomi, she developed enough strength in her lungs and core muscles to be able to begin singing again, even being able to take to the stage at British Home’s Summer Party to perform Gershwin’s Summertime, and for an encore, the folk song Blow the Wind Southerly.
She now practises for one hour a day and has even begun giving singing lessons to the other residents at the Home.
“One of the most rewarding aspects of providing rehabilitation therapy is that we are able to restore and preserve people’s identities,” says Paul Perkin, CEO of British Home.
“We worked with Naomi to strengthen her core muscles and lungs and it’s amazing to see her independence grow over the last few years.
“Naomi’s commitment to recovery, with the help of the therapy team, allowed her to become more independent, and after a long journey, she was able to sing again, which was really special to experience at our annual British Home Summer party.
“Naomi’s love of music and singing has been felt by everyone at the home thanks to the singing lessons that she introduced in June, and it’s amazing that she has been able to help other residents express themselves creatively.”
Naomi began singing from an early age, having grown up in a family passionate about music, but only began classical voice training at the comparatively late age of 26.
By the time she reached the standard at which she could have been accepted by a music college which might have led to a career as a singer, she had two other degrees and an established career in journalism.
Instead, she took a semi-professional path, which included a tour of Wales in Mozart’s The Marriage of Figaro.
A mezzo-contralto, she was in great demand to give concerts for Jewish community organisations, especially the Association of Jewish Refugees. Naomi studied with the then Streatham-based American soprano Arlene Randazzo and performed with her company Randazzo Opera including at The Rookery in Streatham.
Her most recent teacher was Kathryn Harries, a soprano who went on to be director of the National Opera Studio.
However, Naomi suffered from degeneration in her spine, which in 2017 developed into severe cervical myelopathy, which caused compression of the spinal cord in her neck, and therefore complete paralysis from the neck down.
At the beginning of 2018, Naomi had an operation at The Royal London Hospital to relieve the compression on her spinal cord. She was in hospital for six months before the discharge team recommended British Home.
The British Home team developed a tailored therapy plan with physiotherapy to restore nerve pathways and build strength in the muscles that had degenerated due to paralysis.
A lot of focus was placed on developing Naomi’s core and leg muscles. Over time, Naomi became stronger and can now feed herself, type herself and, after three months of intensive rehabilitation at the London Spinal Cord Injury Centre in Stanmore, transfer in and out of a power-wheelchair using a standing frame.
‘CES patients need more community support’
Sadie says CES patients need more help to rebuild their lives after discharge from hospital
“This is a different life and we need help to live it”
Having been left with significant bowel problems as a result of Cauda Equina Syndrome (CES), Sadie was left struggling for months with no support post-discharge from hospital.
After two rounds of surgery following diagnosis in May 2019, Sadie went home with no support or appointments in place, having to cope with her ongoing bowel problems and being confined to a wheelchair with only her family to turn to.
She is now calling for greater awareness of CES and its life-changing impact, and for more to be done to support patients.
“When I left the hospital I didn’t get physio until about 13 or 14 months later,” she told the CES Festival and Conference.
“I did take a lot of healing as I had internal stitches, and that may have been the reason, but I still feel that was a long time. I wanted to push forward and do what I could, but I felt they were always pushing me back.
“It was only three months ago that the incontinence team got involved, I think that’s a very long time, I had 12 months of community nursing. There was no support, the community nurse wasn’t the right way forward I feel. I had no independence and it got me to a very dark place.
“There was no home assessment on leaving hospital, they did ask if I wanted a handrail for the bed which I had, but apart from that, I was sent home and left to get on with it.
“You realise how much you’ve taken for granted – all of a sudden you don’t know how to go to the toilet anymore, that sounds really stupid and other people don’t get it, but you don’t get the feeling to wee, you don’t know what that feeling is anymore.
“I didn’t feel I had any control of anything. My bowel had the biggest impact on me physically but it affected me mentally as well.”
Despite the devastating impact it can have on a person’s life, CES remains little known and understood by many, even within the medical profession.
The syndrome is a rare and severe type of spinal stenosis where the nerves in the lower back suddenly become severely compressed, and failure to diagnose and receive appropriate treatment can lead to greater risk of long-term consequences including incontinence or paralysis, as well as problems with sexual function.
Sadie believes the trauma of CES and its impact is made worse by the lack of provision put in place for patients once they are discharged from hospital.
“Before I’d even discharged from hospital, I was struggling to deal with a lot of things mentally, physically, and with my bowel function. You need some kind of information to leave the hospital with, contact numbers and certainly some kind of mental health support,” she says.
“CES is major, life changing, and these things really need to be before you’re even discharged.
“You’re fighting for appointments as soon as you leave hospital, no-one is interested, but if you could make them before you leave hospital with anybody who is needed, I think that would be totally different.
“Throughout the whole of this you have to try and remain positive but that’s really hard when you’re battling to get appointments and trying to move forward and get some independence. It’s a different life and we need help to live it.”
Sadie is grateful for the support of her partner – “from day one, no matter what is thrown at her, she takes it and carries on reassuring me” – and from the CES community, which is represented by the Cauda Equina Champions Charity.
The charity has created the first-ever CES Festival and Conference to help increase awareness of the condition, bringing together healthcare professionals and patients to share stories and help inform best practice. The week-long event will culminate in International CES Awareness Day on Friday.
“It can be endless, but we need to stay positive although that’s very hard to do. We need to rely on each other,” says Sadie.
“While things are changed in how CES patients and treated and looked upon, we need to lean on each other.”
To attend the remainder of the CES Festival and Conference, register here
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