Today, I hosted the first ever Research & Hope event. When I realised I had the opportunity to host a talk by Professor Vincent Walsh on ‘Brain stimulation and stroke’ I was thrilled … and then I panicked.

I have attended and spoken at numerous lectures and conferences but I had no idea how to organise one. I am very grateful, therefore, that Care Alliance came to my rescue. They agreed to co-host the event and to include it in their line up for Carers’ Week. In fact, they organised almost everything and guided me right down to the last detail. I had come into contact with Care Alliance by chance when I was asking for advice on a completely unrelated matter. I corresponded with Liam, who is amazingly dedicated to his organisation. He was (and is) an immense help to me and, from what I can gather, to many others as well.

It was particularly apt that our first speaker should be Professor Walsh. Our association began in January 2008. It had been two years since Steve had had his stroke and the doctors had informed us that he would be unlikely to improve from that point on. He had finished most of his allotted therapies and we were fighting for a couple of hours of community physiotherapy. I knew that his only chance of recovery lay in my attempts to find something – anything – outside of standard medical treatments.

As I scrolled frantically through the Google listings, I came across a research paper on Transcranial Magnetic Stimulation. It looked like an alien torture device, with large coils held in place on the subject’s head while it emitted magnetic pulses that interfered with thinking and speech. Up to that point, I had been reading and trying to make sense of things on my own but this one really fascinated me. I decided to contact the author of the paper.

People often talk about those pivotal moments in life: a chance meeting, a lost letter, or a phone call. I picked up the phone and, to my amazement, got through first time. The professor not only spoke to me but offered his help. He sent an email to his colleagues, asking if they had any suggestions that could help Steve. His response might not have resulted in a miracle cure for Steve but it gave me an immense boost. For the first time since Steve had had his stroke, I felt I could connect to a wider world of research and expertise, that they would talk to me, and that they would take me seriously.

This got me thinking about the work I was doing for Steve. Remaining true to my academic training, I had all my notes meticulously referenced and written up. As an undergraduate, our wonderful professor of Philosophy (and author of ghost stories) John Gaskin had warned us that “in a few weeks from now you will be as a stranger to the person you are today, so write your notes for that stranger.” I realised that with the help of real experts, I could make my research available to other stroke survivors. I tested the waters by phoning and emailing neurologists, researchers and authors in a variety of disciplines from all over the world and I was amazed by how many gave me their time. That was the beginning of what was to become the Research & Hope website, a venture I intend to expand for many years to come.

I recently heard a sermon on how a single good deed can send out ripples resulting in a tidal wave of beneficial consequences. It made me consider how fortunate I was that my first attempt to make contact with an expert resulted in a response that empowered me to create the Research & Hope website.

Or perhaps it had nothing to do with luck…!

The website is finally live. Years of work and anticipation are a thing of the past. Yesterday http://researchandhope.com was born and today I am preparing for a TV interview.

For some reason, an image keeps popping into my mind of teaching classes in metaphysics. “What time is it?” I would ask the class. This was followed by many surprised and confident answers. Then I would follow with, “What is time?” I would get just as much surprise but very few confident answers. As I thought about why this scene was playing over in my mind, I remembered that among the complicated and intricate answers to the question “what is time” my favourite was always this: “Time is the permanent possibility of change.”

In a way that thought has driven me from the time Steve had his stroke to the launch of this website. Every second that passes represents an opportunity to make a change. No matter what the prognosis, as long as time is passing there is a chance to change the outcome.

Despite missing the opportunity to attend school for most of his childhood, Steve had educated himself. He was one of the wisest and most intelligent people I have ever known. As his karate students struggled to inhale during another gruelling session, Steve would bellow, “This time will never come again! You are only cheating yourselves if you don’t make the most of it.”

I have always hidden from cameras. As a consequence, there are very few family photos that include me. Now I find myself posing for the press and sitting in front of TV cameras. No matter how I feel, I believe in Steve’s words “this time will never come again” and I have to make each moment count so that in my future, I can look back and know that I didn’t waste any opportunity.

I have always been a perfectionist. For many years, it was a constant struggle to liberate anything, from my writings to my physical form.

However, years of karate have taught me that perfection is infinitely beyond my grasp.

After more than eight years of practicing karate at least four times a week, I was sitting with the senior students as they told their epic tales of battles fought, injuries sustained and the weird and wonderful characters that had graced our dojo (training hall).

Then they told a story that related to me. “You,” it began, “were the worst beginner we have ever had…” While striving for perfection in every movement I had revealed that I had no natural coordination, no fitness, no ability to remember the moves, and a natural gift for turning the wrong way at every opportunity. This news came as I was preparing to take my black belt exam.

While working towards my black belt, I had started to train at least twice a day, six days a week. I maintained this for more than five years in an ever-present bid to attain that elusive perfection of movement. Now, after 22 years of karate training, I understand this: what I have learned about perseverance, self-acceptance and facing my fears is so much more valuable than attaining the perfect punch.

As I nursed bruises and broken bones, I would read and re-read Miyamaoto Musashi’s The Book of Five Rings:

‘…determine that today you will overcome yourself of the day before, tomorrow you will win over those of lesser skill, and later you will win over those of greater skill.’

Now I am about to launch the Research & Hope website. I want to share every piece of information about stroke recovery; I want to read and evaluate every clinical trial; I want to speak to every researcher around the world; I want to…

I need to remember that I can strive for perfection but I have to accept my limitations.

The website I launch will be the first step on a journey. I cannot promise that I have read every paper ever published on every treatment that I discuss. I cannot guarantee that each treatment will work for each stroke survivor. What I can do is promise that I have worked tirelessly to bring together as much useful information as I can for stroke survivors and their families. I can also promise that I will do my utmost to keep the research up-to-date and that I will produce a similar body of work on Parkinson’s disease, Alzheimer’s disease and acquired brain injury just as soon as I can.

What I discovered through my practice of karate has been confirmed in my search for new treatments to heal Steve. There is a desire to get it right first time, to find the perfect cure. When a treatment works we feel elated and then disappointed that it did not achieve more. Some treatments have not worked for him at all and there is always the temptation to give in to despair. It is at those times that I remember what I have learned from practising karate, a lesson neatly summarised by Samuel Beckett every time I look up from my computer and see the postcard pinned in front of me. It reads: ‘No matter. Try again failing. Fail better.’

When I thought about launching Research & Hope, I envisaged all kinds of potential obstacles. Could I complete the research? Would anyone be interested? Would the medical establishment recognise my work? As it turned out, the answers were all positive. I have been able to research 24 treatment for stroke so far; everyone I have approached with the demonstration site is extremely interested; and some members of the medical establishment have been working with me. I have even been invited to join a group of ‘friends’ of James Connolly Hospital in Dublin to discuss stroke.

What I could not have predicted was the snow! Two weeks ago, I was ready to meet my web designer, Paul McDonnell. We were going to finalise what he calls the “bit under the bonnet” of the website and then finish the task of blending design with function. I have also been working with a small, but brilliant, team who are helping with some of the research, proofreading, getting permission to use photographs and so much more. We were all supposed to meet Paul, so that he could teach us how to turn a computer full of data into a friendly, useful website.

Instead of frantically working to bring the Research & Hope website to life, I am sitting here looking through my window at thick snow, treacherous roads, and the ice sculpture that was once my car. Despite frustrations and setbacks, however, I will get this website live as soon as is humanly possible. It may not happen by the new year, as I had hoped, but it will happen. I always have to remind myself to take a step back, accept that there are things I cannot control, and try to take charge of what I can control. This is my attitude to what is happening. As Marcus Aurelius, one of the Stoic philosophers, wrote:

‘If you are distressed by any external thing, it is not this thing which disturbs you, but your own judgment about it. And it is in your power to wipe out that judgment now.’

In January of 2010, as I trawled through the Internet, I came across a research paper on a drug called L-dopa. It was already a well-known treatment for Parkinson’s disease but it was now being tested for stroke. The researchers’ preliminary results looked encouraging, so I printed out the paper and brought it to one of Steve’s doctors.

We have been blessed with the most wonderful doctors over the years, from our GP to the consultants who have cared for Steve. There may be problems with the way the Irish health service is run but most of the doctors and nurses we have met have been second to none. Armed with my printout, we spoke to Steve’s doctor. He listened carefully and then spent many weeks doing his own research. He agreed to give Steve a one-month trial on L-dopa under his supervision.

Every time Steve has tried a new treatment it has been under the best medical supervision. He would never take a drug or try a treatment without full and honest discussions with his medical team. Many of the drugs and treatments have side effects and they can be dangerous when mixed with standard stroke medications. So, if you are tempted to try something new, please go to your doctor(s) first. If they listen and do their research, please take their advice; if they won’t listen, find a well-qualified doctor who will.

Steve started on a low dose of L-dopa for a week and then moved onto a higher dose. After five days, he started walking without his stick inside the house. He just forgot to pick it up! He had walked without his stick when he left rehab about six months after his stroke but that ability didn’t last long, for reasons I’ll explain in a moment.
As Steve was so young when he had the stroke, he was lucky enough to be accepted into one of the best rehab centres in Europe. He received four months of intensive therapy. The therapists were incredible; they got him out of his wheelchair and taught him to walk again. He learned to dress himself with assistance and to speak three or four words.
But there were problems ahead. One year after Steve’s stroke, we went for a routine cholesterol check. The consultant asked me to take the children out of the room and then told me Steve had a 100% blockage in the artery on one side of his neck and a 97% blockage on the other side. He arranged a delicate operation, to take place one week after our visit; but what a week that was.

When I left the house to collect Gina from summer school, I knew that Steve might not be there when I got home. Every day, as we arrived at the house, I told the children to wait in the car for a minute while I went in to see if their father was still alive. I woke up every night to check that he was breathing. At the end of the week, I brought him into hospital for surgery.

A few days after the operation, Steve came home. He was back in a wheelchair. It took weeks for him to become mobile again and by that time his legs had tightened up due to the ‘high tone’ (stiffness) associated with stroke. I did my best to stretch him out but it was hard, as I had slipped three disks in my back while lifting him and I also had scoliosis, a condition whereby my back was twisted into the wrong shape. When Steve eventually got to his feet again, he was back to taking shuffling steps and leaning heavily on his stick.

Over the next two years I arranged bouts of physiotherapy for Steve, but he didn’t recover the progress he had made in the rehab unit until he underwent stem cell therapy in 2009. Despite the wonderful progress he made after that, he still needed his stick … until five days into the trial with L-dopa!

As the L-dopa trial turned into weeks, the length of Steve’s stride increased and so did his confidence. The tightness in his arms and legs loosened and he even added some new words to his small vocabulary. For example, my phone rang the other day and Steve said “phone” later that night; he also said “good bye” when he was going to bed. Every day, when the drug wears off, the improvements do too. So his doctor modified the dose to ensure that the positive effects of L-dopa would last during Steve’s waking hours. Now, three months later Steve walks two miles a day, a feat that seemed impossible such a short time ago. He is fitter, happier and more motivated than ever to keep improving.

Many people say there is little hope of progress two years after a stroke. Steve has made great gains more than three years after his stroke. Recently, I came across yet another potential treatment. I have sent the research papers to Steve’s doctor. As soon as there is any news, I will share our experiences with you.

As I worked my way through Google’s search listings, clicking on entry after entry that had  ‘stroke’  in the title, the same advertisement kept popping up. I had trained myself not to see the ads but for some reason, I clicked on this one. I started reading about stem cell replacement therapy that used your own cells. I could feel my heart beating faster.

I phoned the number listed and spent half an hour quizzing the representative. Finally, I printed out the information sheet, ran down the stairs and read it to Steve before bursting into tears. There were case histories of people with stroke who had spoken again and walked again and there were research papers and clinical trials I could read. There was a whole lot of controversy surrounding stem cell treatment but there was also real hope that it could help Steve.

In the following months, I did so much research on stem cell replacement therapy that it was one of the reasons why I started the Research & Hope website. I phoned countless researchers and professors of neurology all over the world. It was amazing that so many of these busy people took the time to talk to me and explain their views on stem cell treatment. Most of them ended the conversation with a warning that stem cell therapy was in its infancy and that it was too soon to expect positive results. On the other side, there were so many case histories detailing patients who had made at least some recovery. Also, people we had met in waiting rooms, while attending Steve’s therapy sessions, had told us of the successful treatment of friends and relatives. I looked into every story and every claim as closely as I could.

It took about two years from the day I found that ad to the day Steve travelled to get the treatment. I needed the time to do the research and to find the money to pay for the therapy: a total of €10,000. Throughout that time, the prospect of treatment kept Steve going. I tried to be realistic, telling him time and again that it might not work, that it was controversial, and that we might not be able to find the money. His reply was always the same: he pointed to the photograph in our kitchen of him holding Gina as a baby. That image is his symbol for becoming well again, for returning to the man he once was and living the life we once had. Despite all the warnings and controversy, we decided to try. If we tried and failed, at least we would know that we had done everything we could. If we didn’t try, we would always wonder if we had missed an opportunity to help Steve recover.

By the time Steve was on the plane, we both understood that he would not come back walking and talking as though he had never had a stroke. The best we could hope for was a small gain: maybe less tension in his limbs, or two or three more words. At the outside, we wished that his paralyzed hand and arm would move.

Steve travelled on a Monday morning with one of his top karate students, now a karate master in his own right. As soon as they arrived at the clinic, the doctors extracted some cells from Steve’s hip. It was a painful process but one he was prepared for. Two days later they injected his own stem cells into his spinal column through a lumber puncture, another painful procedure. Two days after that, Steve and his friend came home. It was Friday.

During the first couple of nights at home, Steve was in severe pain down his right side; the side affected by the stroke. The morning after his return was a Saturday. In the past, I had often asked him to close his fist, hoping that he would forget he’d had a stroke and just do it. This was a movement most doctors had told him was impossible. When I asked him to do it that Saturday morning, he clenched his hand and then bent his elbow for the first time since the stroke. We both burst into tears.

I started some physiotherapy and speech therapy with him immediately, even though he was very tired. I then asked him to name some objects as I pointed to them. We had been trying this test for years with little or no success but this time, Steve named 4 out of 20 objects. Over the next few weeks, the size of Steve’s stride also increased dramatically. He worked so hard that he needed to sleep for hours after each speech and physio session.

It is now six months since his treatment. Steve says that his thinking is much clearer. Everyone has noticed how easily he can follow a conversation now, even when four or five people are taking part. He used to rely on a mobility scooter when he left the house but we have given it away, as he can walk anywhere he wants to with his stick. He still needs to rest after ten minutes or so but this is improving and he is walking straighter and faster all the time. He can say his name when you ask him and he has gained three or four extra words he can choose to say if he wants to. Before the treatment, he had very few words and most of the time he just said “difficult” as the answer to every question. Now, he sometimes finds the word he wants and while he is trying, a wide range of words come out one after the other. This is not what the therapists call “functional” speech but it is clear that something has changed.

The same is true of his ability to write. He still can’t write me a message. Nonetheless, before stem cell therapy, when I asked him to write a word, Steve could only draw straight lines on a page. A few days after the treatment, he wrote letters and words for the first time since his stroke:  “I When…” and  “fote extchd”.  I interpreted the latter as “Foot Extended”, which is the exercise we had just practiced. Again, this is not a means of communication but we believe it is a sign of positive change.

We are convinced that stem cell therapy has worked for Steve. We had realistic expectations before he had the treatment, so we are delighted with the results. He will have another treatment just as soon as we can get him there.

Please feel free to ask me about anything or to leave a comment.

As a student and teacher of philosophy, I have always believed it possible to think my way out of any situation. In the past, I have almost always managed to get what I want, although it hasn’t always turned out to be what I expected.

Four years ago, I found myself in a situation that made me wonder if I was wrong. Maybe I had met my match; maybe this was the situation where thinking was not going to help. I was only half right.

In June of 2006, after many difficult years, I found myself living a magical life. I had the most wonderful six-year-old daughter, a perfect baby girl in my arms and a man who was, in my eyes, more desirable than any movie star. Things were going well with my family too, especially my sister Belinda and her four fabulous sons. By December, everything had changed.

My sister had lost her long battle with breast cancer and a stroke had turned my karate master Steve into a 17-stone child with no speech, severely reduced movement and little understanding of what was going on around him. Two of my young cousins had died suddenly; my mother was dangerously ill; I had slipped a disk trying to lift Steve and I had many signs of breast cancer. How was I going to think my way out of this?

There were days when I wondered if I was the subject of a cosmic stress test run by a group of mad scientists in a Matrix-type world. I imagined them giggling away in their lab, nudging each other and whispering, “Lets see what happens if we make the commode split, the doorbell ring, the baby cry and Steve shout all at the same time!”

Some people turn to comfort food at times like this. I do too but I also take comfort in reading; the heavier and more obscure the topic the better. When Steve fell ill, I asked his doctors and therapists to give me papers to read. I wanted everything they had on stroke. Then I went online. I started on the first entry that popped up and read and read and read.

After a year, I stumbled upon a treatment the doctors had never mentioned and it really helped Steve. I found another and another, until the light came back into his eyes, the movement came back into his paralyzed arm and the hope came back into our lives. I decided to share my discoveries with others who, like us, were desperately searching for help.

To this end, I am launching a website called Research & Hope in September. It is the culmination of my research so far and includes more than 20 treatments that most doctors never mention. It also has ideas to help children understand illness and a place for carers and family members to find practical advice and support.

Through this blog, I’ll be sharing my experiences while finishing the website. I’ll also be writing about any new treatments Steve is trying and logging his progress… or lack of it! He has just started testing a new drug. As far as I know, he’s the first stroke survivor to try it in Europe.

Please feel free to ask me about anything or to leave a comment.