Aviva Cohen has amazing persistence in helping her husband recover from a terrifying stroke. She and Steve are a formidable pair. I am sure that Steve's hard work and attitude will not only benefit himself but also inspire others to keep battling to recover. I wish you could see the picure of them in this article in The Irish Mail. Aviva came across Fast ForWord and us after reading Norman Doidge's book "The Brain that Changes Itself". Their story is reprinted in full from the print edition of the paper........
After her husband's stroke, this woman left no stone unturned in her quest to bring him back...
By: JENNY FRIEL
AVIVA Cohen is a former university lecture and communications consultant. her husband Steve was one of Ireland's leading karate masters and ran the karate club at Trinity College — where the couple met — when he was struck down by a massive stroke. Aged only in his 50s, the stroke left him unable to speak, paralysed down his right side and severely brain damaged. Aviva, 45, has spent the last five years intensely researching and testing treatments for stroke patients. She has put together all of her findings — with case studies, references and arguments for and against various treatments — on her website, researchandhope.com. Aviva and Steve live in Lucan with their two daughters, 11-yearold Gina and five-year-old Tanya.
JUNE BANK HOLIDAY 2006 The day started so beautifully — we did some karate and weight training in the morning and then went shopping for new clothes we needed for my nephew's upcoming Bar Mitzvah. When we got home, Steve played for ages in the garden with Gina, while I was inside with baby Tanya. We were so happy.
In the afternoon, myself and the girls developed some kind of vomiting bug so I put them to bed. Steve started getting sick much later. He was flattened by it — he'd never really been sick before and it was strange for me to see him like that.
He was sitting down on the couch and I had to go up and change the girls' duvet covers again.
When I went to get him to help me, he was asleep but he was kind of shuddering. I thought he was snoring but it must have been him having the stroke and I didn't know. I left him to sleep, but when I went into him again he was just staring at his hand. I thought he was joking at first.
I thought it was crazy but I called an ambulance. They took him to Connolly Hospital in Blanchardstown, Dublin. All the way there I kept thinking to myself that it was strange but really wasn't expecting anything too bad — I thought it might have been a minor stroke and he'd maybe need some medication.
When I got in there Steve was in an isolated room. I got chatting to one of the young doctors and was showing her photos of the girls on my phone when I saw her eyes filling up with tears. I knew then we were in trouble, that it was serious.
They brought me down to see him. He took his mask off and said 'I love you', and put the mask back on. They were the last words I would hear him speak for some time.
THREE DAYS LATER We were told that Steve probably wouldn't die but it was such a strange day as it was also my nephew's Bar Mitzvah. My sister, Belinda, was dying of breast cancer and it was her last wish that we would all be together for this. I had to go, but it was extraordinarily hard.
A karate student of Steve's drove up from Galway to sit with him through the night while I went to the party. It was so surreal, watching people eating, drinking and dancing. People were asking about Steve but I just told them I couldn't talk about it.
JULY 2006 Steve was moved into Unit 4, an old TB section of the hospital. Overcrowded and understaffed, it was like something out of an old war movie. He had lost all his speech and couldn't make a sound. We used to talk the whole time to each other, we were like kids.
When we started living together we'd stay up all night talking and be wrecked the next day. At his karate allowance protects heart more classes in Trinity he was unbelievably charismatic and afterwards everyone would gather round him to listen to him talk about karate, Japanese history and about life — he was so articulate. One of the hardest things is talking to somebody who can't talk back.
He was almost infantile, he couldn't recognise the simplest object. Or when you tried talking to him, he couldn't follow what was going on at all. He was paralysed down his right side, from his right shoulder everything was gone, down to his right leg.
I'd get to the hospital every morning about 6am. Steve's niece was fantastic minding the girls and the mothers from the school did a rota to take care of them when she couldn't — I had so much support.
I spent my time in the hospital reading as much as I could about strokes and different treatments — I asked all of the consultants for papers to read. The speech therapist and the occupational therapist were both brilliant. I would ask anyone who would listen to give me something to read — the heavier the better, I didn't care. I was trying to learn as much as I could.
SEPTEMBER 2006 Steve was moved to the rehabilitation centre in Dún Laoghaire. An MRI showed up to 50 per cent of his brain had dark areas — you don't know if it's dead or dormant.
After a few months at the centre, we definitely started to notice some improvement — he could follow a conversation with me if I took my time, he could walk very slowly with a stick and, funnily enough, he understood time.
MID DECEMBER 2006 My sister Belinda died in the hospice. She had gone into hospital a week after Steve's stroke and from there to the hospice in Harold's Cross. I didn't get to see her nearly as much as I wanted.
I tried to visit her as often as I could, I phoned her every day and we'd spend an hour on the phone. It was very hard trying to balance everything: Steve, my sister, taking care of the girls.
LATE DECEMBER 2006 Steve came home for good just in time for Christmas. We tried to make it as normal as possible, but it was hard. Gina asked me if her daddy was a baby now, I had to spend some time trying to explain to her what was wrong. Because Steve couldn't get up the stairs he had to sleep downstairs. The first night he came home I set my mobile phone to ring the house phone so whenever he needed me all he'd have to do is press the green button. He took the phone and dropped it straight into his glass of water.
I sat down on the floor and I cried, I just wasn't sure I could do it — Tanya needed her nappy changed, Gina needed attention, my mother was in the hospital with an angina attack. I thought I was living in a nightmare and I couldn't wake up. But I just had to get on with things — you either lie down and die or you get up and get on with it.
JUNE 2007 I came across hyperbaric oxygen therapy on the internet. I read all the clinical trials and they showed great promise. It's like going into a plane: they put a mask on you, you sit there for an hour and they decompress you. It forces the air into the blood — because the air is under pressure, the oxygen can get into the plasma as well as the red blood cells. The capillaries in the brain are tiny so it forces the oxygen through those as well, so it can reignite dormant brain tissue. It was €100 a session but you need to go every four days and must do up to 30 treatments. I used all our savings but we ran out of money after 24 treatments.
The therapy made a big difference, Steve was able to follow conversations and use the remote control for the TV. Although there was no physical improvement, it was our first big breakthrough.
JULY 2007 Steve had a routine scan on his right carotid artery, which provides the main blood supply to the brain. His left had been completely blocked, which is what caused his stroke. Even though he was so physically fit, he had bad cholesterol. For years he had eaten a lot of junk food and he had been a smoker, but gave up when we had Gina.
Because he had been living a much healthier lifestyle, he never thought to have his cholesterol checked — it was the biggest mistake of his life. The scan showed that his right artery was 95 to 97 per cent blocked. He had to have emergency surgery — if he didn't, he would definitely die. After the operation he lost most of the mobility he had gained in the rehabilitation centre.
Being back in the wheelchair was devastating for Steve, but there really was no other choice.
OCTOBER 2007 My mother saw a television documentary on zolpidem, a miracle drug that can wake some people up out of a coma or a stroke. I asked my doctor if Steve could try it.
He said yes, that if ever somebody asked they would prescribe it, it's on the market and it's licensed. But we were never told about it. I started to wonder about why people weren't told about these things and what else was out there that we could try. Steve tried the drug but it didn't do anything for him. It was disappointing but every time we tried a new treatment I gave myself a big pep talk: 'It probably won't work, but we have to try it, otherwise we'll never know, but don't expect too much.'
Reading about zolpidem I learned that it only works for a very small percentage of people. But when it does it has a huge affect and it's so cheap. I thought it was amazing how much stuff was out there that people didn't know about.
This is where the idea for the website began, bringing together all the information and making it accessible.
JANUARY 2008 I read about transcranial magnetic stimulation (TMS) online and decided to ring the professor researching the treatment. I got through to Vincent Walsh inLondon and spent hours on the phone with him.
He said was in the very early stages of research but to send him Steve's details and he would pass them on to everybody he knew working in the area to see if anybody could help. It was an amazing feeling to ring this professor who has written books and to get all this feedback.
JANUARY 2009 My brother gave me a book, The Brain That Changes Itself — about new treatments and neuro-plasticity, which says the brain is pliable and can rebuild itself. This is different to what we've been told up to now, which is that the brain can't be repaired and you have to learn to live with the damage. Neuro-plasticity is used with the belief that even a damaged brain can be repaired to some extent. It gave us enormous hope One of the techniques I read about was Fast For-Word, a computer literacy programme aimed at kids that slows down the words, making them easier to take in. Steve did it for months, and things improved a lot for him in terms of his ability to follow multiple speakers in conversations and his ability to respond to questions. He was also processing things a lot faster.
MAY 2009 I decided to give up work. Taking care of Steve, researching treatments, raising the girls — it was all too much. I never seemed to have a chance to breathe. It was a huge relief.
JULY 2009 Steve went to Düsseldorf for adult stem cell therapy. One of his karate students went with him. It took me two years to do enough research to trust the therapy and we had to raise over €8,000. He left on Monday and the first extraction of bone marrow from his hip was later that day. He recovered until Wednesday when they injected treated cells through a lumbar puncture into his spinal column. On Friday, he came home and the next morning I said, 'Steve move your hand.' He made a fist and bent his elbow. I burst into tears and Steve was very emotional too. It doesn't work for everybody — we were lucky. The quality of Steve's life improved immediately, his walking was a lot better and he could speak a few words. He could say my name.
MARCH 2010 I read about a U.S. trial using the drug levodopa on stroke patients. It helps signals to pass through the neurons and through the brain and is usually used as a drug to treat Parkinson's. After talking to our consultant about it, he did his own research. He then came back and said they'd do a one-week trial. Within days, Steve was walking better. After two or three weeks he was walking up to two or three miles a day — what a breakthrough.
FEBRUARY 15, 2011 Our website, researchandhope.com, was launched. Web designer Paul McDonnell did an amazing job. At the moment it just has a stroke section but I hope to launch sections on Parkinson's disease, acquired brain injury and Alzheimer's.
The research being done on pain control could also be of phenomenal help to people. I've also put together an online magazine for family carers. The first instalment of Carers' Sanctuary Magazine is sponsored by Boyne Valley Honey and will be launched next month. I'm looking for more sponsors for the main website as I'm desperate to get as much research done as I can.
It's been a lot of hard work but I didn't have a choice. Anyone who met Steve loved him — he is funny, intelligent and charismatic. He left school at 11 but was the most wellread man I've ever met and I've worked in universities everywhere. That brain — you couldn't just leave it sitting in that body.