'I just wanted my husband back': One woman shares her personal research into strokes
Devastated by her husband's severe stroke, Aviva Cohen trawled thousands of research papers for treatment options.
Alice Jolly is an author, playwrite and teaches creative writing at Oxford University. She is crowd-funding her own memoir of infertility and surrogacy with the publisher Unbound. 50 per cent of the proceeds of the book will be donated to SANDS (The Stillbirth and Neonatal Death Foundation).
Tuesday 16 August 2011
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.
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