'I just wanted my husband back': One woman shares her personal research into strokes

view gallery VIEW GALLERY

Devastated by her husband's severe stroke, Aviva Cohen trawled thousands of research papers for treatment options.

It was a beautiful day. My husband Steve, 50, had cleared out the garden shed and was chasing our six-year-old around with a water pistol. He'd blown up the paddling pool – literally blown it up with his mouth, a 6ft paddling pool. This was after an hour of karate. That was pretty normal for him, he was that kind of guy.

That evening, the girls weren't feeling well so we put them to bed early. We were just sitting down to watch the telly when I heard them being sick, so I ran upstairs. I was changing sheets, when I noticed Steve wasn't with me. It was strange, because he was always a very hands-on dad.

I went downstairs to get him – I thought he was asleep on the couch. But he was sitting there, staring at his right hand as if it was some kind of foreign object. He didn't seem to recognise me. He didn't seem to be present at all. He's always had these striking blue eyes – somehow they were empty.

By the time the ambulance arrived, I had realised it was a stroke. I got Steve's niece to look after the children, and I followed him to the hospital. We sat there all night. Steve was the karate teacher at Trinity College, Dublin. He was internationally recognised; you're usually a master or a sensei, but he was a kyoshi, which means grand master. And it's true – he was phenomenal. When people walked into his class they would be mesmerised by his personality and agility.

We had been together for eight years. Our eldest daughter was six, and our baby 11 months. I knew things were really bad, that night in the hospital, because when I showed the doctor a photo of the girls, her eyes filled up.

I stayed with him all of the first night. They couldn't confirm that he would survive. It was his cholesterol. Both of his parents had died in their forties; there was a hereditary problem. It became a juggling act: home, then back to the hospital. About a week later, my sister went into a hospice and then my mother had a heart attack. I was shunted between three hospitals. Our neighbours were incredible, helping me with the girls.

It was immensely difficult for them; I'd never worked more than two or three days a week and Steve was always there to look after them. He would do bedtime stories, change nappies, take them to school. Suddenly their big, powerful daddy – the strongest man in the world, they called him – was lying in a hospital bed, unable to speak, to move.

After three weeks, he moved to the rehabilitation centre. He received amazing care; by the time he left he was able to walk with a stick. He could repeat words, even if he didn't understand what you were saying. But his behaviour wasn't appropriate. My biggest concern was that he would hand our daughter a kettle of boiling water if she put her hand out for it. Or a carving knife if she wanted it. We tried to teach him to make coffee, but he couldn't understand why a ladle wouldn't fit into the coffee jar.

So I started researching treatment options. I had a research background: I had lectured in philosophy, psychoanalysis, and communications theory before moving into training for businesses. While I was sitting with Steve, I'd ask healthcare professionals to give me research papers – anything that I could educate myself about strokes. I went on the internet. There were millions upon millions of entries. I started working through them, trying to find connections. After a year, I came across something called hyperbaric oxygen therapy. I don't know how to describe it. It's oxygen under pressure. Divers use it to avoid getting the bends. So I took Steve to get it.

We talked to the GP about everything. We talked to the consultants. I knew I wasn't an expert, but I read every clinical trial I could find. There was plenty I decided against. But the oxygen therapy worked. He started behaving more like an adult. He was more appropriate. He seemed to understand what was going on. Simple things: he was able to use the remote control for the TV, and could find what he wanted to watch. He was interacting more with people.

The next breakthrough was stem-cell therapy, two years later. I researched the hospital that I wanted to send him to in Germany, contacting the German Medical Association and getting papers on the doctors. I did as many background checks as I could and decided it was something we were prepared to chance. My dad gave us the money and we sent Steve over, knowing it might not work. On Monday they extracted cells from his hip. On Wednesday they implanted them into his brain. And on Saturday morning he could move the hand and arm that had been paralysed for three years. The neurological connections had been repaired.

I'd been phoning and writing to neurosurgeons all over the world. Many were very sceptical – about the stem-cell therapy in particular. I don't know how many said it was a waste of time, a waste of money. Give your money to your kids. But because I had been a researcher, I was able to assess clinical trials, and I was able to make an informed decision. When people ask me if I think they should go for stem-cell therapy, I say it's 50-50.

Since then, we've tried a number of different treatments. There's been a computer game to help with processing and understanding spoken language. There's been music therapy. And, last year, I found a tiny trial in America on a drug usually used for Parkinson's disease. So I asked his consultant whether it was safe for Steve to try. Within a couple of weeks, he was walking. He had been shuffling with his stick. Suddenly he could walk a mile.

Throughout, I was taking these meticulous notes, creating files. I realised I could share it with people. The breakthrough came when I contacted Professor Vincent Walsh at the University College London to ask about a treatment. He explained that his research was in very early stages, but was so helpful, so kind that I just felt inspired to put it all together. So I set up my website, Research and Hope.

Now I spend every spare minute doing research. I've started investigating other illnesses too – from Parkinson's to Locked-in Syndrome. The idea is to help people make sense of it all. I'm a researcher and it took me a year to find something for Steve. There are a lot of treatments claiming miraculous results – but so often they're trying to sell you something. I'm not trying to persuade anybody to have a treatment. I'm just trying to help with that feeling of helplessness.

The feedback has been incredible. People email to say thank you. I've had some volunteering to help. Hundreds with other illnesses – MS or heart disease – have asked when I'm going to start researching their conditions. My answer is, I'm desperate for funding. I'm looking for ethical companies to sponsor pages of the site. I've been lucky; another project I launched, an online magazine for carers, is being sponsored by Boyne Valley Honey.

Steve's personality has been my driving force. You see films where people fall madly in love; they forget things, they fail to turn up to work. That's how I was with Steve – crazy in love. I idolised him. To have him locked inside this body was immensely difficult. I wanted his personality to come back – and it's finally starting to. He's able to interact. He's able to make the right decisions and follow conversations. He can't read much, but he can manage a couple of words. He has about 15 words he can say out loud. Phrases such as – "How was school today?" And "I'd like a cup of coffee, please". He's able to walk at a pace that means we can go out as a family. And it's making a huge difference to our lives.

For more information, visit the Research & Hope website: researchandhope.com

Aviva Cohen's magazine for carers, 'Carers' Sanctuary' is available at carerssanctuary.com

Strokes and their aftermath

* A stroke happens when the blood supply to part of the brain is cut off and brain cells are then damaged or die due to a lack of vital nutrients and oxygen.

* A stroke's effect is sudden and immediate. A person can be left numb, weak or paralysed on one side of the body, with blurred vision or slurred speech.

* The long-term effects can vary. These can range from damage to bodilyfunctions, thought processes or the ability to learn and communicate.

* Recovery is different for eachindividual. Many patients see the most dramatic recovery in the weeksimmediately after their stroke, but others continue to improve over a far longer period.

* After initial hospital treatment, rehabilitation helps patients to resume normal life. This can involve anything from re-learning skills to trying to adapt to newfound limitations.


Emma Watson has become the latest target of the 4Chan nude hacking scandal
peopleThreats follows actress' speech on feminism and equality at the UN
Life and Style
food + drink
Arts and Entertainment
British actor Idris Elba is also a DJ and rapper who played Ibiza last summer
Life and Style
Life and Style
ebooksA superb mix of recipes serving up the freshest of local produce in a delicious range of styles
Life and Style
ebooksFrom the lifespan of a slug to the distance to the Sun: answers to 500 questions from readers
Arts and Entertainment
Geena Davis, founder and chair of the Geena Davis Institute on Gender in Media
Alan Bennett criticised the lack of fairness in British society encapsulated by the private school system
peopleBut he does like Stewart Lee
John Terry, Frank Lampard
footballChelsea captain sends signed shirt to fan whose mum had died
Arts and Entertainment
Rita Ora will replace Kylie Minogue as a judge on The Voice 2015
Life and Style
Life and Style
Alan Turing, who was convicted of gross indecency in 1952, was granted a royal pardon last year
Arts and Entertainment
Sheridan Smith as Cilla Black and Ed Stoppard as her manager Brian Epstein
tvCilla Episode 2 review: Grit under the glamour in part two of biopic series starring Sheridan Smith
Life and Style
Arts and Entertainment
Tennis player Andy Murray's mum Judy has been paired with Anton du Beke for Strictly Come Dancing. 'I'm absolutely delighted,' she said.
tvJudy Murray 'struggling' to let Anton Du Beke take control on Strictly
Life and Style
Vote with your wallet: the app can help shoppers feel more informed about items on sale
lifeNew app reveals political leanings of food companies
David Moyes and Louis van Gaal
Latest stories from i100
Have you tried new the Independent Digital Edition apps?

ES Rentals

    Independent Dating

    By clicking 'Search' you
    are agreeing to our
    Terms of Use.

    iJobs Job Widget
    iJobs General

    Technical Project Manager - Software and Infrastructure - Government Experience

    £400 Per Day: Clearwater People Solutions Ltd: Our client based in Central Lon...

    Head of Business Studies

    Negotiable: Randstad Education Reading: Head of Business Studies needed for a ...

    Teaching Assistant in secondary school Manchester

    £11280 - £14400 per annum: Randstad Education Manchester Secondary: Teaching a...

    Primary teaching roles in Ipswich

    £21552 - £31588 per annum: Randstad Education Cambridge: Randstad Education re...

    Day In a Page

    Secret politics of the weekly shop

    The politics of the weekly shop

    New app reveals political leanings of food companies
    Beam me up, Scottie!

    Beam me up, Scottie!

    Celebrity Trekkies from Alex Salmond to Barack Obama
    Beware Wet Paint: The ICA's latest ambitious exhibition

    Beware Wet Paint

    The ICA's latest ambitious exhibition
    Pink Floyd have produced some of rock's greatest ever album covers

    Pink Floyd have produced some of rock's greatest ever album covers

    Can 'The Endless River' carry on the tradition?
    Sanctuary for the suicidal

    Sanctuary for the suicidal

    One mother's story of how London charity Maytree helped her son with his depression
    A roller-coaster tale from the 'voice of a generation'

    Not That Kind of Girl:

    A roller-coaster tale from 'voice of a generation' Lena Dunham
    London is not bedlam or a cradle of vice. In fact it, as much as anywhere, deserves independence

    London is not bedlam or a cradle of vice

    In fact it, as much as anywhere, deserves independence
    Vivienne Westwood 'didn’t want' relationship with Malcolm McLaren

    Vivienne Westwood 'didn’t want' relationship with McLaren

    Designer 'felt pressured' into going out with Sex Pistols manager
    Jourdan Dunn: Model mother

    Model mother

    Jordan Dunn became one of the best-paid models in the world
    Apple still coolest brand – despite U2 PR disaster

    Apple still the coolest brand

    Despite PR disaster of free U2 album
    Scottish referendum: The Yes vote was the love that dared speak its name, but it was not to be

    Despite the result, this is the end of the status quo

    Boyd Tonkin on the fall-out from the Scottish referendum
    Manolo Blahnik: The high priest of heels talks flats, Englishness, and why he loves Mary Beard

    Manolo Blahnik: Flats, Englishness, and Mary Beard

    The shoe designer who has been dubbed 'the patron saint of the stiletto'
    The Beatles biographer reveals exclusive original manuscripts of some of the best pop songs ever written

    Scrambled eggs and LSD

    Behind The Beatles' lyrics - thanks to Hunter Davis's original manuscript copies
    'Normcore' fashion: Blending in is the new standing out in latest catwalk non-trend

    'Normcore': Blending in is the new standing out

    Just when fashion was in grave danger of running out of trends, it only went and invented the non-trend. Rebecca Gonsalves investigates
    Dance’s new leading ladies fight back: How female vocalists are now writing their own hits

    New leading ladies of dance fight back

    How female vocalists are now writing their own hits