June 2010: Using L-dopa for Stroke
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.
Life after rehab
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 (aged 6) 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!
The impact of 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 one day and Steve said “phone” later that night; he also said “good bye” when he was going to bed. Every day, when the drug wore off, the improvements did too. So his doctor modified the dose to ensure that the positive effects of L-dopa would last during Steve’s waking hours. It is now many years since Steve started talking L-dopa, he walks around three miles every day; a feat that once seemed impossible. 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 continues to make gains more than seven years after his stroke. It is so important to keep searching and to capitalise on any well tested innovation that can make life easier.r