May 2010: Stem Cells
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.
Two years of research
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 led me to start 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.
Steve’s Stem Cell Transplantation
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. This improvement did not last more than a few weeks but there were other changes in his speech. Over the next few weeks, the size of Steve’s stride also increased dramatically and this continued to improve. He worked so hard that he needed to sleep for hours after each speech and physio session.
After his treatment Steve’s thinking became much clearer. Everyone noticed how much more easily he could follow a conversation, even when four or five people were taking part. He used to rely on a mobility scooter when he left the house but we gave it away a few months after the stem cell therapy and now he can walk anywhere he wants to with his stick. He still needed to rest after ten minutes or so but it was a great improvement; he was walking straighter and faster than before. He learned to say his name when you ask him and he 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. He could sometimes find the word he wanted and while he was trying, a wider range of words would come out one after the other. This is not what the therapists call “functional” speech but it is clear that something had changed. He maintained all of these improvements and he would build on them over the following years.
There were also temporary changes to his ability to write. He still couldn’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 took it as a sign of positive change. This ability to write lasted for several months but then faded away. Unlike many of the other improvements which he never lost.
We are convinced that stem cell therapy worked for Steve. We had realistic expectations before he had the treatment, so we were delighted with the results.