Covid led to my strokes
When I had two strokes while working in a high-powered job, it stunned everyone who knew me. It was unexpected. I was very fit; swimming outdoors all year, cycling more than 10 hours a week, and a regular gym-goer. I was a scuba diving instructor in my spare time and didn’t imagine that I would be hit by strokes.
My mother died after several strokes following a full and adventurous life. Nearly 80, she had just stopped her acting career. I was deeply sad watching her drift away. But I held on to the belief that she was dying from old age, that she would not face disability, which she would have hated, and that there was little that could be done.
So when I had two strokes while working in a high-powered job, it stunned everyone who knew me. It was unexpected. I was very fit; swimming outdoors all year, cycling more than 10 hours a week, and a regular gym-goer. I was a scuba diving instructor in my spare time and didn’t imagine that I would be hit by strokes.
Your risk of a stroke does increase with age. And fewer people worldwide are dying from strokes thanks to medical care. However, although the number of strokes appears to be falling overall, it is actually going up in the young and middle-aged.
Strokes are among the most potentially devastating brain disorders and the most common cause of neurological disability in the UK. Acquired Brain Injury (ABI) can also be caused by among other things a fall, a road accident, or a tumour.
Nearly 1 in 3 people will have an ABI at some point in their life. More than 135 million worldwide are living with brain injury. But because of a lack of focus on such brain injuries, this underestimates the scale of the problem.
We will all know someone with brain injury at some point. Whoever they are, they are unlikely to have the care they need. The World Health Organisation (WHO) identifies rehabilitation as an unmet global need – and not just in less developed countries. Neurorehabilitation is among the most neglected and underfunded service.
In my case, I was in my early 60s, so no teenager. But I was very fit. No one thought I was at risk. On a recent medical test for diving, I’d been told I was tremendously fit for my age, and my heart was like that of a 50-year-old.
It was Covid that led to my strokes. It began with a fever. I felt rotten after work one day and stayed at home. I wasn’t really worried. But my elder daughter, a doctor, told me after a week not to be stubborn and to go to hospital. I was dropped off by my wife, expecting to be sent home, or at worst let out in a day or two.
The medical team swiftly found that I had Covid and took me to an isolation ward. Within a couple of days, with my oxygen levels very low and the medical team worried, I was put on breathing apparatus.
I was on oxygen for several days. After that, my memory is blank. I don’t know why. Perhaps the strokes wiped part of my memory. Perhaps my brain was shielding me from a difficult experience. Who knows.
What I do know is that it was an awful time for my wife and three children.
Prevented from seeing me by Covid restrictions, they had to wait at home. I had gone into hospital in pyjamas with only a toothbrush. I had not taken a razor in as I thought I wouldn’t be in long enough to need it – how wrong I was.
My elder daughter set up regular calls with the medical team. My youngest daughter flew home from Latin America where she was working. My son in Oxford set up daily calls for the family. Each day they talked to each other, trying to stay calm and hoping for good news.
At first, I seemed to be getting better. The hospital had taken me off the pressurised breathing apparatus which they felt I no longer needed. I had been moved to a ward in preparation for going home.
Bu then, without warning, I had what looked like a stroke. My left side was weak and uncoordinated and I wasn’t making sense. As they were checking, doctors noticed blood clots in the lungs and legs, as well as my brain.
I was rapidly put on strong blood-thinning drugs. But despite these, I had another stroke, this time acute and damaging my right side.
The medical team upped the dose of blood thinners to very high levels. Then they watched and waited. There was little more they could do. They told my wife what had happened and said they were monitoring me closely. She understood. It had been serious before. Now it was touch and go.
But I slowly turned the corner. I had no more strokes. My clots dissolved thanks to the blood thinners. I was in the right place and in good hands.
Strokes are the most common reason for debilitating neurological damage in the UK. The National Hospital for Neurology and Neurosurgery and University College Hospital in London, who were in charge of my care, see about 1,000 people with stroke each year. Their team can leap into action to prescribe clot-busting drugs and to remove clots.
It may sound a strange choice or word, but I consider myself lucky. I was in hospital when I had my strokes with access to these specialists. I was in the hands of a superb team of expert doctors and health care workers. I was very fit. And, I had outstanding care in and after hospital.
My strokes were provoked by Covid. The blood clots stopped the vital flow of blood to the brain. Potentially devastating, the outcome depends on which part of the brain it affects, the damage it does, and how quickly it can be treated.
The most serious damage was caused by what is known as an acute stroke. Every year in the UK there are more than 100,000 stroke victims, old and young. One in four strokes are fatal within a year, and over a third of stroke survivors in the UK are dependent on others.
How much damage is actually caused depends on where it happens, what causes it, and the most important factor, how quickly the blood flow can be restored. Every minute without treatment means 1.9 million neurons are damaged after the start of the stroke.
After I recovered, my medical team sought to play down their life-saving care, telling me that I survived largely thanks to my fitness. Maybe that helped. But without the brilliant medical care – and my luck in being in a hospital when it all happened – I have no doubt that despite my fitness, I would not be here today.
My memories start again when I was moved to a recuperation ward, where the work started to get me walking again and to see what damage the strokes had wreaked in the brain.
After 10 days in the recuperation ward, I was declared fit enough to return home. I was overjoyed. I had not seen my family since the day I had walked into the hospital nearly two months earlier.
I was driven home from the hospital for a tearful reunion with my family. It was the day of the week when people went onto the street to applaud the NHS. I joined. Neighbours, who knew what I had been through, turned and applauded me. I wept again. I was alive and with my family again. What more did I need?
What I needed was concentrated, specialist care to help me overcome the damage caused by the strokes; to help me walk properly, to help me deal with a damaged brain that could not remember things, and to manage my damaged sight.
An overstretched NHS working at the limit of its capacity could not provide it. So many people were left without the care they needed.
I was amazingly lucky. I was contacted by a specialist team offering physical and cognitive therapy over the internet. It was a lifesaver. I and my family felt we were in safe hands who knew what I should do to start to rebuild my life.
My euphoria at surviving had passed. I had been plunged into depression at what I had lost. I felt I was the same person as before, but I could not do what I had been able to do before. And I didn’t know where to start.
The phone call inviting me to take part in therapy was from N-ROL – an innovative answer to the problem that people with stroke and other brain injuries were spending less time in hospital getting rehabilitation because of the Covid pandemic.
The N-ROL therapy supported by SameYou used the flexibility of online delivery to make it possible to treat more people at a time, but also to build a supportive and self-sustaining community.
Not only was this helping to ease pressure on local community rehabilitation teams, it was using the Internet to deliver care quickly, effectively and efficiently. For me, it was a lifesaver. I had gone from being too busy at work to having no shortage of time but no idea where I could find care and what I should be looking for.
N-ROL took an innovative approach to therapy. It used the flexibility of online delivery to reach more people. By bringing people together, it was not only able to treat more people but also to create a community. Specialists were on hand to advise on specific problems. Participants were able to support each other.
When my mood was at its lowest, N-ROL offered around eight hours a week of physical and cognitive rehabilitation – free and easy to access online. There was no need to travel to a medical or health centre – which takes time and, for some in our group, would not have been physically possible.
I found myself building strength with exercise, tackling my low mood by talking to therapists and other brain injury sufferers, and making new friendships with people who had suffered strokes and who shared their insights. It was a lifesaver, helping me see that I really could continue to live a fulfilling and fulfilled life.
Sometimes good ideas come when they are least expected, or when the pressure is on. N-ROL and SameYou did not just provide support to me and other people who had suffered strokes. They created a new way of providing – quickly and efficiently – help to people who have suffered a brain injury.
It is hard to appreciate, but doctors are increasingly optimistic about finding better treatments for strokes and other brain injuries. But as an increasing number of people survive major brain injury, there is a growing need for care and treatment after brain injury.
NROL provided not just therapy. It provided hope for me and for my family. It showed that improvement is possible. It tapped into the latest research into brain plasticity showing that the brain can be ‘rewired’ after damage – from illness or accident.
I am well on the way to recovery – a recovery that many originally thought unlikely. Of course, I still have much work to do. My memory is at times poor. I am getting stronger, but I need to take care when exercising my right side, the side most affected by the stroke. I still can’t drive because of my poor eyesight.
But I am alive. I am recovering each day. I am enjoying time with my family – and have the chance to thank them profoundly for everything they have done for me, not just during my illness. And I can express my deep gratitude to SameYou.
It’s not just gratitude I feel. It’s excitement.SameYou and UCL want to do more N-ROL programmes in the UK and beyond. As someone who has experienced it, I know how N-ROL can bring hope and direction when things are difficult. And with their model, they can reach so many more people than traditional therapy that you have to attend in person.
But it can’t be done without funding.
Please donate. Your donation today will help SameYou to take action and continue to improve neurorehabilitation for everyone.