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Patient story

A journey of recovery after COVID, a stroke and Long COVID

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Following the life-threatening experiences of contracting COVID-19, having a stroke and then living with Long COVID, James is being supported in rebuilding his life by the QEF Care and Rehabilitation Centre. Here, he shares his story

 

“On Christmas Eve I felt bad, I passed out and they called an ambulance out. They took me into East Surrey hospital, checked my sats, gave me oxygen and when my sats improved I went back home.

But the next day it happened again, I passed out and they took me to A&E, then a respiratory ward. I didn’t make any improvement, so a bed was prepared for me on ICU, where they put me on a ventilator that saved my life. I remained in ICU at East Surrey Hospital for a further two weeks until I was stable enough to be moved. During this time, it was uncertain if I would survive.

I was airlifted to the Lane Fox Unit at St Thomas’ Hospital In London, in the same ward where Boris Johnson the Prime Minister was treated. I stayed on a ventilator there for four weeks.

When I finally came round, I was completely paralysed and I’d lost sight in my left eye. Apparently, I’d had a mild stroke whilst I was on the ventilator and all I could move was my head – I couldn’t even swallow on my own.

Whilst I had my tubes in my neck on a ventilator, my kidneys started failing so I was on dialysis as well, so it was a fun time.  I was in there for two months while they stabilised me and saved my life and then I went back to East Surrey hospital.

In total I have now been in hospital for six months.

The head physio at East Surrey hospital recommend that I come to QEF as this would be the best place for my neuro rehabilitation needs.  I’ve been at QEF for about 10 weeks now. The physiotherapy is unbelievable – they’ve done a marvellous job and have got me virtually walking again – I know I’m aided by sticks, but they’ve got my limbs and my arms working.

When I came here all I could do was feed myself – just. I couldn’t move my legs, I had to be hoisted into bed, hoisted into the shower, hoisted everywhere – I couldn’t even roll over on my side.

For four months of my time in hospital I laid flat on my back not being able to do anything. It was a place I didn’t want to be anymore. But when I got here after a few weeks I started to see slight improvements and my mind focused on just looking towards the future.

Every time I did physio I saw a change and they saw a big change as well. It’s a brilliant facility here, it really is. I can use both my legs now. I can stand up and walk with crutches and walk with a frame. I’ve got strength in my arms but they make me put most of my weight through my legs.

Long COVID has given me a lot of fatigue, when they work me hard at physio I really do feel tired and all I want to do is come back to bed and sleep.

I’ve also lost a lot of my voice after the pipes have been down there for so long and the tracheotomy pipe in my throat. My sight in my left eye has come back about 50 per cent – I had a big ulcer in my eye from when I was on a ventilator. You have terrible hallucinations when you’re on a ventilator – recovering in hospital and not being able to move was the worst thing ever.

I’d had both my jabs now but obviously too late. My wife works in the NHS in East Surrey and bought COVID home. My sons both got it too as they were visiting at the time, but they just had cold symptoms for a day or so and I nearly popped my clogs! It was a mad journey and I wouldn’t wish anyone to go through it.

I’m doing a lot of physio here and some occupational therapy, such as cooking for myself, but mainly physiotherapy and this last couple of weeks it’s been intense. The care here has been terrific – the nurses and the carers have been absolutely brilliant.”

To find out more about QEF’s Care and Rehabilitation Centre email neurorehab@qef.org.uk or visit qef.org.uk/CRC_professionals 

Patient story

From re-learning to walk after amputation to competing in the Paralympics

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Former military police officer and Blesma member Lesley Stewart spent many years in agonising pain, and eventually lost her leg, due to undiagnosed dystonia. Read her incredible story of coming back from years of struggle to compete in the Paralympics 

 

Lesley, a former Royal Military Police officer, competed in Tokyo this year in a range of shooting disciplines. Though she missed out on a medal, her sights remain set on Paris 2024. 

“I had to retrain my brain to shoot competitively,” she explains. “There’s an aggression to military shooting, but it’s the opposite in a competition. To succeed, it’s all about staying calm. You’ve got to relax, lower your heartbeat, keep your movements to a minimum.”

Lesley, from Blairgowrie in Perthshire, Scotland, puts her excellence in the event down to her determination. Joining the Army in 2000, her life changed forever on an annual combat fitness test.

“I pulled a muscle in my back during the eight-mile run. It ached straight away, but within a week I was getting severe pain in my left ankle. My foot began twisting and pointing to the right. None of the medics could understand it because I hadn’t hurt my leg at all,” she recalls.

Years of mystery followed as Lesley underwent numerous scans and operations in an attempt to straighten her foot, but not a single medical expert could explain why her ankle kept twisting sideways and upwards.

“I got moved to Headley Court and had further operations, but everything failed. I was in a huge amount of pain and was heavily medicated – so much so that I didn’t know where I was,” says Lesley.

“I’d phone my dad up to ask him to visit even though he’d just left me! Eventually, in 2007, I had a below-knee amputation because the leg was starting to die.”

But even this didn’t put an end to Lesley’s ordeal.

“After a couple of months of rehab, I started getting horrendous pain behind my knee. It was buckling backwards. I had more operations, but the doctors realised that they had to explore further. I was eventually diagnosed with something called dystonia.

“Basically, when I pulled that muscle in my back, my brain malfunctioned and started sending signals to my ankle, telling it to go into spasm. After the amputation, the signal just moved to my next joint, which was my knee.

“My life was horrendous. I was in constant pain. Eventually, I was told about a process called deep brain stimulation, during which a box is implanted into your chest and wires are fused into your brain. The box would emit electric currents with the aim of blocking the pain signals to my knee.

“The operation is dangerous – I was told I might not wake up and that there was a high possibility that if the signal went to my spine or neck they could snap – but I was in so much pain that I decided to go for it.”

Lesley underwent the procedure in September 2009. “Thankfully, the operation was a success because after a couple of weeks, the knee released itself,” says Lesley. “I’d been in bed for years, so I had to retrain my whole body to walk. There was a lot of crying, but the hard work paid off.”

During her rehab Lesley was introduced to shooting. “The Shooting Association visited Headley to host a ‘have a go’ day. I did well and was invited to another weekend, where I was spotted by the performance director of the GB Paralympic team.”

Though an infection then led to her leg having to be amputated further above the knee, shooting helped Lesley to stay focused.

“I’m now walking well, and shooting better than I ever have,” she says. Lesley is full of praise for two communities that, she says, have supported her over the years; athletes and Blesma.

“Shooting is a small world and the athletes have been like another family to me. Blesma has also been great. My Blesma Support Officer is often in touch, and the Association assists me with funding and other support. The charity has been great during lockdown; I’ve enjoyed all the Zoom conversations, activities and presentations,” she adds.

 Learn more about Lesley’s road to recovery at Blesma.org

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Inpatient rehab

Patient story: “Covid wasn’t as scary for me as the after-effects were.”

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Patient story

‘My brain haemorrhage told me to value the time we have and make the most of it’

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A man who overcame a near-fatal brain haemorrhage and defied the odds to claim numerous world records is now set to run a gruelling eight marathons in eight days to enable vital support for brain injury survivors and their families to continue.

Dad-of-two Neil Rhodes, 63, has completed more than 17 ultramarathons since he nearly died of a brain haemorrhage in 2003.

The super fit personal trainer was aged 45 and practising on a rowing machine just three days before the World Indoor Rowing Championships when he collapsed and was rushed to hospital.

There, doctors discovered a berry aneurysm in his middle cerebral artery had burst due to a ‘ticking time bomb’ weakness which had been there since he was born.

Neil underwent an eight-and-a-half-hour operation to save his life, but doctors gave him just a seven per cent chance of survival.

Incredibly, he woke up from a coma a week later with no side effects at all, other than a headache – and was discharged from hospital after ten more days.

“At the time of my brain haemorrhage I was probably one of the fittest 45-year-olds in the UK,” says Neil, originally from North Ferriby in East Riding, but who now lives in Yeovil, Somerset.

“I had no risk factors or indication whatsoever of the ticking time bomb inside my body.

“There was no pain, no warning or no memory.

“Most people who suffer such a massive brain haemorrhage either don’t survive, or are left with severe brain damage.

“I was incredibly lucky to survive with no side effects whatsoever.

“Doctors told me they had never seen anything like it before and believed my fitness saved my life.

“They said ‘whatever you were doing before, go back to it’ so I was determined to do just that.”

Since then, Neil has been determined to celebrate his recovery by taking on ultra marathons across Europe and even the North Pole, as well as smashing a number of fitness Guinness World Records.

And this September he is set to complete eight marathons in eight days – a combined total of 189 miles across East and North Yorkshire – in aid of The Brain Charity, which helps people who have had brain haemorrhages rebuild their lives and supports the families of those who do not survive.

“It seemed only right I use my fitness to help others who haven’t been as lucky as I was – and that is why I am supporting The Brain Charity,” says Neil.

Neil plans to raise £4,000 which will be split between The Brain Charity and Caudwell Children, a cause supporting disabled youngsters.

He will begin his trek on September 4, running the 79-mile Yorkshire Wolds Way and the 110-mile Cleveland Way from Hessle in East Yorkshire to Helmsley in North Yorkshire.

Despite being a fitness fanatic, before his haemorrhage Neil had never run outside, so after being discharged from hospital, he decided to climb Snowdon.

Determined to keep celebrating his recovery with yet more fitness challenges, Neil bagged a world record just five months after his haemorrhage when he more than doubled the record for the height climbed on a Versaclimber fitness machine in one hour while carrying a 40lb pack.

He discovered a passion for outdoor trekking and three years after leaving hospital took on the Trans-Alpine run, which saw him run 143 miles across four European countries in eight days.

Other challenges Neil has taken on since then include a marathon across the North Pole and setting more Guinness World Records for rowing 1,000,000m on an indoor rowing machine in 8 days, and riding the longest distance on a static indoor cycling bike in 24 hours.

Neil says: “If I can do something that helps people and makes people happy, that’s important.

“My brain haemorrhage told me to value the time we have and make the most of it.

“I’ve known other people who have had brain haemorrhages and survived but been left with lifelong effects.

“I feel incredibly lucky and that is why I have such a positive mental attitude and want to help others. I’ll give anything a go.”

Tui Benjamin, head of fundraising at The Brain Charity, says: “We are honoured Neil is taking on such an impressive challenge for The Brain Charity.

“We see firsthand the devastating impact brain haemorrhage can have, both on the lives of survivors and on the friends and family of those who sadly do not survive, and cannot do what we do without the support of our generous fundraisers.

“Neil’s true determination and strength of spirit in overcoming his brain haemorrhage and going on to achieve numerous World Records is an inspiration.”

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