The stroke hasn’t robbed me of me

A couple of weeks ago I had a stroke. I can find telling people a bit exhausting, and in the first few days afterward, I found it very hard to talk about what had happened to me. I was raw, very emotional, and quick to tears. But it’s not a subject I want to avoid (it’s part of me), and I don’t mind other people knowing, although I realise many people know very little about stroke — certainly I did 2 weeks ago.

I know that what happened to me is not particularly unusual. Countless people suffer a stroke, many far worse than me. I don’t want this to be a sob story, I’m not looking for sympathy — I’m grateful for many things.

Like Emilia Clarke did after her stroke, I want to help break the silence around stroke. I also want to raise awareness about stroke, and I hope that in the future someone will benefit from me sharing my stroke story here.

6 weeks ago, I felt “a bit funny” and then couldn’t move my left arm

It’s Friday (28 August), I’m working at home. It’s lunchtime, and I’m in the kitchen with Rebecca, my amazing wife. We’re getting lunch ready together, I’m going to cook some rice. I’ve got the rice measured out, and I now need to do the same with some water. Suddenly, I feel a bit funny, a slight tingle in my head, and I wonder if I’m coming down with something, maybe a cold? Maybe Covid?

Then I get a tingle down both of my arms, and I feel that it’s going to be incredibly hard to get the water for the rice, just turning the tap on feels like it will be a huge effort. I look at my arms, my hands, the tap, the mug in my hand. I feel detached from them all. It’s like my mind is separate from my body, looking down at these hands that are somehow separate from me. I tell Rebecca I feel funny, and she looks at me worried (she later tells me that my speech was funny). She helps me sit down in a chair and asks if I know that I’m looking off to the right. I do, but it feels natural. Then I realise that my left arm feels odd. I can’t move it.

In other words, I had all of the classic FAST symptoms of a stroke, as in: Face, Arm, Speech, —and Rebecca knew it’s Time to call 999.

Yet, since things like a stroke don’t happen to *me,* (I’d never previously needed to go into hospital for anything more serious than cuts and bruises), I question the need to call 999, to go into hospital: wasn’t it all a bit of a fuss?

I stood up, stumbled and fell into a small table and broke it, I couldn’t walk in a straight line, I couldn’t do anything with my left arm, I tried to put on a jumper and couldn’t without help. I realised I might actually be having a stroke. Suddenly the hospital felt like a good idea. My father-in-law, who lives close to us, arrived. The paramedics arrived.

An ambulance wasn’t available nearby, so my father-in-law drove me into A&E, with a paramedic in the back, taking my blood pressure, which was crazy high (my systolic was over 220, 120 is probably about normal for someone of my age).

I was able to walk from the car into the hospital, with a paramedic by my side, but as soon as I crossed the threshold of the entrance and stepped foot in the hospital, I burst into tears.

I was taken straight through to a bed and lots of people were around me, helping me, asking me questions, putting a needle in my arm. I failed two of the basic neurological tests: I couldn’t hold out my left arm, and I couldn’t squeeze the nurse’s fingers with my left hand. I was sent for an urgent CT scan on my brain. I was told that the scan results were clear, that there was no sign of any damage. A stroke nurse again did the neurological tests on me, I felt there was no point — I knew the two tests that I’d fail, but miraculously, and counter to my own expectations, I could squeeze her fingers with my left hand. It was a moment of pure joy. I was so happy! It was about two hours after I’d first felt “a bit funny”.

I continued to make an extraordinary recovery and was discharged later that same day. I felt exhausted but was otherwise fine. My brother-in-law picked me up from the hospital and, seeing me walk towards his car, said “you don’t look like an ill man”. The following week I had an MRI scan, and my attack was diagnosed as being the result of a rare type of migraine. I was whacked, truly exhausted, but otherwise, I felt pretty good.

Back to Life — a false start

In just under 2 weeks, I returned to work, starting in a new role. I felt good. I worked a shortened week, and then we went on a long-planned family holiday. It felt great. The weather was good the whole time we were there. We had fun, we went for walks, we kayaked down the river, we discovered Welsh wine and beer, I went running a couple of times, I did some skipping, I saw a kingfisher (I’d never seen one before), I learnt what a single petal rose is, we had some fallow deer come into the garden of where we were staying. We came home relaxed and refreshed, singing along to Simon and Garfunkel in the car, and went to bed blissed out.

2 weeks ago, a bit of my brain died

The next morning I woke up and I couldn’t move my left arm, it was completely paralysed: “not again, not again,” I thought. I stumbled out of bed and into the bathroom, knocking into the bathroom door. The left-hand side of my face was tingling and drooping, my speech was a bit slurred.

Given my previous diagnosis, we assumed that I was having another migraine, but my symptoms did not clear after a couple of hours, and when I went to the hospital, an MRI on my brain scan confirmed what I feared: I’d had a stroke. And the doctors said that my previous ‘migraine’ had actually been a ‘TIA’ (a transient ischaemic attack, sometimes called a minor stroke).

Norman Doidge, a psychiatrist, psychoanalyst, and author of The Brain that Changes Itself and The Brain’s Way of Healing, describes a stroke as “a sudden calamitous blow. The brain is punched out from within. A blood clot or bleed in the brain’s arteries cuts off oxygen to the brain’s tissues, killing them.”

In more mundane terms, a stroke is a type of brain attack. It happens when the blood supply to part of the brain is cut off, killing brain cells. There are two main types of stroke: ischaemic (due to a blocked blood vessel in the brain, sometimes referred to as a clot) and haemorrhagic (due to bleeding in or around the brain). I had a ‘lacunar stroke’ the most common type of ischaemic stroke, which results from the blockage or closing of small arteries that provide blood to the brain’s deep structures. It was in the right hemisphere of my brain (which controls the left-hand side of your body), hence the paralysis in my left arm.

I am lucky that my nearest hospital is Addenbrookes, an internationally known university teaching hospital attached to the University of Cambridge. In some hospitals, treating people who have had a stroke is part of general medicine. In Addenbrookes, it is a separate specialist discipline. I was on a ward that only looked after stroke patients, and I saw five doctors, including two professors of stroke medicine, one of who I was told “wrote the textbook”, three specialist stroke nurses, two physiotherapists, two OTs, a speech and language therapist, a neuropsychologist, and many nurses, and healthcare assistants.

I always thought of stroke as something that happens to old people. My grandpa had strokes in his 70s. It was a massive shock when my uncle died from a big stroke when he was 60. I had never heard of it happening to someone in their mid-forties. It was sobering to see the number of patients admitted with a stroke. There were four beds in my room, and whilst I was there a new patient arrived in the room on average every day. It brought home to me how many people have a stroke.

On the flip side, I realised that this turnover was only possible because people kept leaving. I saw stroke patients make amazing recoveries in a short period of time: a man who couldn’t talk when he came in one afternoon who could talk the next morning; a man who couldn’t feed himself or sit up in bed, and didn’t want to eat food, who a couple of days later was sitting up in a chair and was feeding himself; a man who couldn’t get out of bed, who the next day the physios helped to walk.

I hope all of the staff in ward R2 (as the acute stroke ward in Addenbrookes where I was is called) get a great sense of satisfaction from the work that they do, because it’s truly life-changing for their patients.

The Stroke Association explains that one in four strokes in the UK happens to people of working age. Even when I’ve fallen out of the habit of doing regular exercise, I’ve always considered myself to be fit and healthy. I have a great job, I eat a very healthy diet. I never thought of getting my blood pressure checked.

And, whilst having a stroke when you’re 44 can seem massively unlucky, it also means that the prognosis for recovery is good. My doctors told me that young people generally recover quicker, and recovery can continue months after the stroke happened.

In hospital, I start to worry that I haven’t appreciated life’s simple pleasures enough. Most mornings when we were on holiday I went outside before breakfast, looked out over the valley, did some Qigong, and felt the warmth of the sun on my face and body. But had I really appreciated that feeling? I want to stretch and feel the warmth of the sun on my face and body again. Given my arm, would I ever be able to do that? Rebecca reassured me that I would and helps me to go outside. I walk maybe 50 metres and sit on a bench for a few minutes. It feels amazing.

The following day, I’ve more confidence in my walking, so I get dressed and go outside by myself, back to the same bench. I’ve also got more strength in my left shoulder and manage a stretch. It’s a wonderful feeling. 

I was fortunate to be out of the hospital in just under a week, and I hope to have decades of healthy life still ahead of me. The key thing for me now is to do my rehab exercises and to help my brain to recover. I can already see some early positive signs, I need to keep working so that these continue and fully bloom. Like the Lion in the Wizard of Oz, I feel like I need to ask for courage.

The stroke hasn’t robbed me of me

I’ve had an “early supported discharge” from the hospital, and I’m under the care of the neurorehab team, who provide ongoing support and therapy. It’s obviously been a massive shock, and I have a lot to process. However, I saw first-hand in the hospital that many people have far worse strokes than I did.

In terms of the common effects of stroke, I’m lucky: my speech is good, my walking is good, I have not experienced any communication problems (although when I’m tired — such as at the end of the day, or even after a long conversation — I sometimes articulate my words a little less clearly), I don’t have any continence problems, my cognitive abilities remain good, I’ve not had any memory loss, I don’t have any vision problems (although I feel I am slightly more sensitive to bright light), I’m not in any pain. So there's lots I am grateful for. The key impacts for me are that I have a severely weakened left arm, and hand in particular, and I get tired quickly (fatigue is one of the most common effects of stroke). Everyone tells me that in terms of recovering from a stroke it is very early days. No one has said when it will stop being “early days”… Thankfully, every day — with amazing support from my wonderful family — I regain some mobility and strength in my left arm and hand. I also get a bit more energy every day.

Hope: 2 weeks ago, my brain started creating new pathways

The brain’s ability to heal itself, to ‘rewire’ itself is extraordinary. Neuroplasticity, or brain plasticity, is your brain’s ability to reorganise itself, which it does by creating new neural pathways. 

"If you are driving from here to Milwaukee, and the main bridge goes out, first you are paralysed. Then you take old secondary roads through the farmland. Then, as you use these roads more, you find shorter paths to use to get where you want to go, and you start to get there faster.’ These ‘secondary’ neural pathways are ‘unmasked’ or exposed, and, with use, strengthened. This ‘unmasking’ is generally thought to be one of the main ways the plastic brain reorganises itself.”

Paul Bach-y-Rita, Neuroscientist

So, my stroke blew up the fast, efficient motorway-style connections in my brain that enabled my brain to control and move my left arm, and now the brain is busy looking for and indeed creating entirely new, alternative pathways that go around the damaged area, re-purposing adjacent brain cells. At first, these new connections are weak and slow, but over time and the more I use them, they will get stronger and faster.

“Pole, Pole”

One of the pieces of advice that I’ve found particularly helpful I was given by one of Rebecca’s friends who had a stroke a couple of years ago. She advised me to pause between activities, where an ‘activity’ can be something as simple as standing up.

20 years ago my brother and I climbed Kilimanjaro together. He recently reminded me of another piece of advice, which we were given by the guides we had. They kept telling us to go “pole, pole” (slowly, slowly). We had to go really slowly, taking very small steps. But we did that and we got to the top of the mountain. It’s time for me to climb another mountain.