Introduction

On 8 October 2016, at the age of 62 years, I had a stroke. It was ironic: for over twenty years I had worked as a consultant in neurological rehabilitation with people who had suffered strokes and other forms of acquired brain injury.

 

How the complaints manifested

Running for a train, I had felt a sudden pain in the right side of my head and noticed a mild weakness and sensory loss in my left arm and leg.  I thought that I’d probably had a stroke, yet I felt remarkably calm, uncharacteristically so. Sitting on the train, the weakness and sensory loss on the left improved over the next hour or two, although I was slightly nauseous. It was late, I was calm, and my instinct was to go home, so I took no steps to find medical care. At home, after a brief chat with my wife, I retired to the study and in the morning found myself on the floor, half-blind, half paralysed, unable to get up.

 

Paralyzed and anxious

From that moment, the feeling of calm disappeared and I felt terror. I was shockingly helpless, and I was not just weakened – my left side was no longer part of me.  My sense of mid-line was lost and with it my balance and control of my entire body. I could not even push myself up into a sitting position.  I realised that this was a serious stroke. 

I had been taking Aspirin for ten years, my blood was thin and I now assume that a bleeding that must have begun on the station platform, had continued slowly during the night until I had lost consciousness. Perhaps mercifully, I have no memory of this.

Eventually, my wife found me and I was taken to the Emergency Department at the John Radcliffe Hospital (JRH) in Oxford.

 

In the hospital

The doctors who examined me declared that I had a dense left-sided hemiplegia. A brain CT scan showed a large intracerebral haemorrhage in the area of the right basal ganglia and thalamus. The scan also showed that edema had formed around the bleeding. I felt reassured that my symptoms of loss of movement and sensation on the left side of my body could be explained by the damage to the right side of my brain: my medical world was in order, something to hold on to. 

 

No surgery but conservative treatment

I remembered that the mortality after an intracerebral haemorrhage is high, but I kept this to myself as I did not want to distress my wife further. For now, she was in the good hands of staff who gave her plain facts coupled with sensitivity and support.

Fortunately, surgery was not considered necessary, and instead I was treated conservatively with drugs, mainly steroids to reduce the oedema, anti-hypertensives to lower the blood pressure, morphine for the headaches, and anticonvulsants to prevent epileptic seizures.  I am grateful for the neurosurgeons’ decision not to remove the haemorrhage surgically, because an operation could have damaged parts of the cortex in the attempt to access it deep in my brain, and I had suffered enough brain damage. My wife was told that my bleed was the size of a clenched fist.

 

Fragments of memories

In the first days, I slept most of the time, and I have only snippets of memories from this period. My wife, who visited me daily, told me that on admission I was able to debate the nature of my stroke with my colleagues, so I was lucid in my waking moments. But my left arm and leg were worse than useless, they were dead limbs to me, and this triggered vivid memories of my early days as a medical student looking at cadavers.

 

Later that day in the intensive care unit, possibly due to the morphine and steroids, my outlook had changed and I could see the funny side of things and said to my wife: “You have to admit that I bring you to the most romantic places”.

 

As a neurologist, I only understood diagnoses, not how it really was

I had considered myself a stroke specialist, after all, I had read the medical literature and for years had worked with stroke patients. But lying in the intensive care unit, and later in the specialist stroke unit, I had time to reflect on my situation and I began to realise how I had overestimated my understanding of the experience of stroke.

 

My own experience of brain damage was a revelation, and still is. I think that, before my stroke, my academic and clinical knowledge actually prevented me from asking my patients the most relevant questions, namely what exactly they suffered.

Knowing medical terms such as “hemiparesis” and “hemianopia” gave me a false sense of confidence that I understood, but I understood their diagnoses, not necessarily their experiences.

 

Instead of asking exploratory questions, I tended to switch to “medical specialist mode” because I thought that this was expected of me and I thought that in this way I could most quickly help the patients, explaining to them their symptoms, prognosis and talking through the possible treatment options. I hoped that it would be reassuring to my patients to show that I knew something about their condition. I soon learnt that I needed more than this to be reassured and to recover.

 

Transfer to intensive rehabilitation

On day ten I was transferred to the intensive rehabilitation unit where I had been a consultant for nearly twenty years.  I had already classified myself as a ‘Level 1 patient’, i.e., one with complex needs.  I was unable to do the simplest things such as hold my head upright or sit.  I required hoists for transfers between bed and wheelchair. Such neediness was more terrifying than I would ever have expected.  I was cared for by excellent and thoughtful staff and even so my condition left me feeling vulnerable and humiliated.  Nonetheless, their relentless sensitivity helped me maintain enough dignity to tolerate the embarrassment I felt about being cared for by my colleagues and to achieve that very difficult thing for a doctor: becoming a patient.

 

I had no active movement and no sensation to touch or proprioception in my left arm and hand. When I woke up at night in the dark hospital room without movement and without sensation in my left arm, it felt as if a dead limb was lying next to me. It was horrendous because it seemed so real. I still suffered flashbacks to this over a year later. I had predicted that my left limbs would be useless but not that I would have no sense of owning them.

 

I sometimes confused them with the limbs of others or even objects. I once thought that I was moving my arm only to discover that this was the limb of my physiotherapist, and on another occasion, I mistook a long cushion for my arm, momentarily thinking that it was my arm lying on the floor.  I began to wonder how many of my patients had similar strange experiences but were too afraid to share them for fear of being thought crazy, and as I discovered more about being a stroke victim this concern stayed with me.

 

Hemianopsia

Following my stroke, my emotional responses to my experiences ranged from curiosity and bemusement (“So this is what dysarthria is like”) to profound horror about my severe level of helplessness.

 

In addition to the left hemiplegia, I also had dysphagia, dysarthria and left hemianopia. Each of these experiences was different from what I expected. I had assumed that hemianopia resulted in a unilateral clouding of the visual fields that would be disruptive but bearable. However, when I looked at my hands on my lap, there was a deep black hole with red jagged edge where my left hand should have been. It had depth and it was unnerving. 

 

Looking at the faces of familiar people, such as my wife and our children, was deeply disconcerting, as parts of their faces seemed to disappear into a jagged black hole. It was distressing to see loved ones like this. Fortunately, the left hemianopia improved spontaneously, and it had disappeared by week six.

 

Hemispatial neglect

In addition, I had left hemineglect. I was not aware of this myself, as is the nature of the condition, so it did not trouble me. It tended to bother others more, for example when I only ate food on the right side of my plate, or when I did not notice instructions given to me from my left, or when I only addressed the person to my right.  

Although there has been slight improvement in my hemineglect, it has remained a problem despite my being involved in a well-designed trial of the use of prism glasses combined with TDCS (transcranial direct current stimulation).  

 

I know that it was well-designed because I had been involved in setting it up. I had anticipated being a ‘healthy control’ but instead I found myself a subject, experiencing discomfort when my head was held in a vice. From now on I might give patient comfort more consideration.

 

Power of speech

Fortunately, I had retained my power of speech, but my ability to engage in conversations was impaired in the early days. I tended to impulsively talk about whatever went through my mind without really listening to the others.

This was quite out of character and it is easy to see how patients are assumed to have had a ‘personality change’, which must be disconcerting for loved ones.

 

This was a mercifully short-lived phase of a few weeks, and in that time both staff and visitors responded kindly so I was never left feeling embarrassed by my verbal outpourings, although some staff gently guided me in the art of reciprocal conversation.

 

Optimistic

Regarding my mood, I was not depressed in the early days, in fact I had told my wife that I was excited about the prospect of rehabilitation because I knew that the brain is able to be plastic and that the Oxford Centre for Enablement (OCE) was an outstanding rehabilitation unit.  I was optimistic about my prognosis at first, perhaps over-optimistic, but this outlook gave me hope and motivation and I am glad that this was not crushed while I settled into my rehabilitation.

My lack of awareness of my limitations sometimes paid off. For example, my physiotherapist once explained that I had achieved a level of movement that was impossible for a person with my degree of muscular weakness. Had she first explained my limitations I might well have given up and not achieved the impossible. It is important to nurture hope without giving false hope, of course, and I now fully appreciate her talent in balancing this.

 

More emotional

There were some obvious emotional changes at this time. I easily became tearful in conversations about moving issues and when watching poignant scenes in films, and sometimes my laughter could morph into tears.

I knew that this phenomenon is called emotionalism, pathological crying or (rather rudely, I think) emotional incontinence. I felt self-conscious about this and I explained the condition to my wife and our children to reassure them that my tears did not mean that I was depressed. Family members, friends and colleagues were surprised by my tearfulness, as they had previously known me as a calm and rather stoical elderly medical professional.

I could explain my dysexecutive signs of impulsivity and impaired control of emotional expression as due to a disruption of the cortico-subcortical loops that were first described by Alexander (1994). In my case, it was most likely the orbitofrontal-subcortical circuit that was most affected. ^{1, 2}  

But how many patients and their families, suffer without being able to make sense of this?

 

Anxieties

Although I had anticipated emotional lability, I was not prepared for the severe anxieties that I began to experience. I became easily frightened and hypervigilant for threat. I saw danger everywhere.

I feared that I would fall from the bed and hit my head; when I held a wooden object I worried about getting a splinter and developing an infection; when out in the wheelchair I feared toppling over into oncoming traffic.

 

There was little joy in our outings because of the fear they triggered. I also suffered from flashbacks to the worst memories associated with my stroke.  Looking back, I wondered whether I fulfilled criteria for Post-traumatic Stress Disorder (PTSD), I certainly had some of the symptoms.

 

Exhausted, neurofatigue

My need to sleep deeply during daytime improved gradually over the weeks, but I suffered from apathy and fatigue. I was easily exhausted by even light physical and mental activities such as arm exercises, reading or having a conversation. From the medical literature and from my experience of working with patients with acquired brain injuries, I thought that I knew about fatigue, but I had thought that it was simply a form of tiredness.

 

I had not appreciated how powerful fatigue is, turning seemingly simple activities into almost insurmountable challenges. I dozed off during the daytime, which I had never done before the stroke, and frequently I could not find the energy within me to do the simplest things and often things that I really wanted to do. 

 

Day after day, fatigue sabotaged my rehabilitation plans. Staff on the unit knew that before my stroke I raced around – it was in my nature – and so I fell into the trap of overexerting myself when I did have energy. I would then become exhausted and unable to continue with the day’s rehabilitation. 

I was guided in fatigue management, but this was difficult and demoralising after a lifetime of being able to be very active whenever I wanted to be.  

Had staff not been so adept at encouraging me when I lacked energy and holding me back when I tried to overdo things, I would have squandered even more valuable rehabilitation time.

 

Apathy and taking initiative

I had also failed to appreciate the experience and impact of apathy. I knew that patients with apathy have problems with initiation, but I soon realised that initiation was almost impossible despite a genuine desire to do something.

 

I desperately wanted to sit or stand but I still needed verbal prompts to start the movements (for instance: “Ready, steady, up” and “Nose over toes, and up he goes”).  After my discharge I still needed to ask my wife to say these mantras as I perched on the side of the bed or on the edge of a seat unable to instigate movement. 

 

Later I simply needed to repeat the phrases to myself to initiate standing, but even now there are many times when I have the will to do something and yet cannot move myself, sometimes to the great frustration of my family as well as to me.  Apathy has been shown to be a major contributor to emotional distress in the caregivers of patients with Parkinson’s Disease.³ And no wonder.

 

Parkinsonism

Early on I thought that I had Parkinsonian symptoms, and this would fit with the site of my stroke. Hypophonia (weak voice) had been obvious from day one, and I became aware that I also had bradyphrenia, bradykinesia (slowness in thinking and moving) and hypomimia (lack of facial expression).

My wife and children were unnerved by my lack of voluntary emotional facial expressions, my “poker face” as they called it, because it meant that I was not able to greet them with a welcoming smile, to respond to their conversations with empathic expressions or to indicate when I was teasing them.   

This hit our teenage children hardest, they felt that their father had lost affection for them and they thought that he’d lost his sanity when they misunderstood his jokes. Along with the other symptoms of stroke this robbed them of their father and our daughter talked of the “living bereavement” she experienced. My family needed constant reassurances about what to expect.

 

Gradual recovery

Over the following weeks and months, my brain started to repair itself. I assume that the damaged parts of my brain started to recover to some degree, and the undamaged parts took on functions previously processed by the damaged parts. Helped by the rehabilitation, I made noticeable progress both regarding my mobility and my mental functions. People told me that my left hemi-neglect was abating, and I was able to hold my concentration for longer during conversations.

 

Feeling nothing and still in pain

Sitting upright was soon not difficult.  However, I developed subluxation of my left shoulder, which was painful. From my training as a neurologist, I had known of dissociated sensory loss whereby a patient can lose the ability to feel touch but can still feel pain in the same body part, but when I was affected myself, I thought it very unfair. I got no pleasure from my wife’s light touch on my hand, yet if she gave my hand a stronger squeeze the pain was severe and a kiss on the left cheek was now just an uncomfortable sensation.

 

Pain medication, a shoulder support and comfortable positioning of my arm helped, especially through the nights when the pain could be extreme. I learned that the pain in my shoulder (and later my hip) was at its worst when it was unpredictable, and that I was able to control the pain to some degree by eliciting it myself with careful active movements under guidance of my therapists. In this way, I became able to ‘work through’ the pain. However, I also learnt just how exhausting it was to be in constant pain. I had previously not realised the effort it takes to manage pain day in and day out, and this certainly contributed to my daily fatigue and risked limiting my ability to use rehabilitation to the full.

 

Sounds and sleep

Something else that risked limiting my rehabilitation was disturbed sleep. The pain would keep me awake but so too did the noises of a hospital unit.  By necessity there would be conversations, bleeps and bells going on through the night.  The role of sleep in memory consolidation is well established ⁴. 

Rehabilitation is all about learning and therefore memory, so a decent night’s sleep seems vital and yet many hospital patients will not have been able to achieve this.  With hindsight I wondered if a simple solution would be offering earplugs to patients.

 

Learning to walk

Eight weeks after the stroke, my physiotherapist strapped an inflatable splint around my left knee, which prevented it from collapsing while I was standing and walking. I did several steps in the gym on that day, and I was euphoric. However, the euphoria was short lived as we agreed that strapping a device around my knee would not be a solution for the rest of my life and my steps were not yet deemed ‘functional’. 

I still had no sense of ‘ownership’ of my left leg and could not visualise it belonging to me and without this ability I was unlikely to be able to initiate movement. 

 

A step forward and a step back

Rehabilitation was literally a step forward and a step back. I had always told patients that recovery would be a series of ups and downs, but my experience was that it sometimes felt as if progress was actually reversed: there were ups, downs and regressions.

 

I quickly learnt how even mild infection could set back progress by exacerbating fatigue, apathy and cognitive deficits.

Some infections cost me valuable rehabilitation time and on one occasion my physical and mental deterioration merited a new brain scan.

 

Fortunately, there was no indication of further brain injury and I was reminded of an earlier conversation with a community stroke nurse who said that patients were sometimes admitted to hospital with suspected strokes only to be diagnosed as suffering from a simple infection.

 

From three months onwards, I was no longer hoisted but transferred by standing on a rota-stand (a metal frame on two wheels) with help from two nurses.  Unfortunately, now my left hip started to hurt every time I stood or walked, probably because of muscle wastage combined with a pre-existing osteoarthritis. I felt that my progress slowed down, and I became impatient because I wanted to walk. I realised that my sense of self was compromised by my inability to walk.

 

In the past, I was often perplexed by my patients’ selective focus on wanting to return to walking, while putting less emphasis on other functional domains. When I was in the same situation myself, I was just as single-minded: I wanted to walk.

 

For me, progress in walking was a frustrating series of starts and stops. There were long periods when the therapists practised only small elements of precision, attention and balance. This seemed trivial but it paid off. Four months after the stroke I finally took a series of steps, and all the preparatory exercises came together. They fell into place, like the pieces of a puzzle: all the preliminary work made sense.

We then practised on parallel bars, a wheeled walking frame and in a hydrotherapy pool, and eventually I walked with a quad stick. It is hard to put into words the joy of regaining even a few steps.

 

In parallel, the occupational therapists had been working with me on the functional mobility and sensation in my left arm and hand. They introduced me to a wide variety of exercises, including visualisations of everyday activities that ultimately complemented each other much as the physiotherapy exercises had.

 

Mirror box

Some exercises worked despite my scepticism. I had sessions with a mirror box: a box with a mirror on one of its outer walls that would reflect the non-paralysed hand and arm. The box was placed on a table in front of me, and I was instructed to put my weak left forearm and hand inside it, and to perform a series of movements with my unaffected right hand outside the box, next to the mirror.

 

This was meant to create the illusion that my left hand was performing the same movements simultaneously. I was initially averse to this therapy, as I rejected the principle of fooling myself. However, after several sessions my left hand started to perform the movements in tandem with my right. This kick-started a process and the active movements of my left arm and hand kept improving. The power of optical illusion had been put to excellent use tricking a sceptical neurologist.  

Cognitive rehabilitation

The occupational therapists also worked on my intellectual functions in collaboration with the clinical neuropsychologists and I was encouraged to review academic papers, but to be honest my focus remained my physical development. I simply wanted mobility and the use of my left hand and arm.  This was disappointing to my wife who wanted me to focus on regaining my concentration and other cognitive abilities so that she might properly have her husband back as a help-mate and companion. We struggled with this difference in opinion right up until my discharge.

 

Home for a few hours

Seven months after my stroke I returned home for a few hours for the first time, helped by my physiotherapist and occupational therapist. We had prepared the home visit well. I was able to walk up the five steps of the stairs to the front door, and from room to room indoors with my quad stick. My wife and our daughter were also present, which made the visit feel like the first step towards returning to my family.

 

But we had underestimated the impact of fatigue and I sat exhausted throughout the visit. This happened on every home-visit: I came home and then simply used time to rest before returning to the hospital.  Only now did I realise that home visits are not the icing on the cake of rehabilitation, they are an active and exhausting part of rehabilitation and in retrospect my family and I had expected too much of me. 

 

Discharge

I was eventually discharged home nine months after my stroke.  I had written hundreds of discharge reports in my time, but it was only on reading my own at home that I fully appreciated how fundamental they are to ongoing rehabilitation.

They are not, or at least should not be, simply a summary of the patient’s disability and limitations with some pragmatic guidance on adaptations for everyday living. A report that stresses the patient’s strengths and potential for recovery can inspire the patient and carers to properly invest time and effort in further rehabilitation.

 

Home therapy and reintegration?

At this time, I still had limited mobility, fatigue and I needed some help showering and dressing. This help was provided by my wife. I also had weekly private therapies at home, some short-lived NHS physiotherapy and some ongoing support from an NHS Community Head Injury Service, which included a specialist vocational rehabilitation team to help re-integrate people with acquired brain injuries back into work.

Yet despite this support, it became increasingly obvious that I would not be able to return to my previous job as a full-time consultant in neurological rehabilitation.

I would not have been able to take on the responsibilities of looking after severely ill patients on a busy hospital ward, to grasp the complexity of their difficulties simultaneously, and to ‘think on my feet’, making rapid decisions about the necessary further investigations and best treatment. It was a painful decision to give up the hope of returning to work as a medical professional and although I did not become depressed, I continued to grieve what I had lost because of the stroke.  

 

Residual complaints

At the time of writing this manuscript, eighteen months after my stroke, I continue on my pathway to recovery.  I still lack the stamina to walk far and I have weakness and sensory disturbance in my left arm and leg, which I still experience as not belonging to my body.  Recently, when trying to turn off the light at the wall switch using my left hand, I saw my hand merge with the light switch. At the same moment, I also had the haptic sensation of this merging. I assume that these sensory disturbances were related to defective plasticity processes in the pathways between the right parietal cortex and the right thalamus, a patient without neurological knowledge might not have been so intrigued by the experience.

 

Guest lecture presentation neurologist with stroke

Not long ago I gave a presentation to my former colleagues about my recent experiences and I called it: “Stroke: I knew {@£*&} all”, something that I’d said to my wife as she sat with me in A&E on day one.

The talk was a way of thanking my colleagues for their extraordinarily patient and sensitive care, but also I hoped that sharing my experiences might help them help future patients. 

One question that followed the talk was a rather sobering: “What was the worst thing about your stroke?”  but my response was instantaneous: “The helplessness.” 

 

Before my stroke I would not have predicted the profound existential distress, hopelessness and embarrassment – even shame - that my helplessness would give me.  Even now it haunts me each time I must ask for help or I realise my limitations.  Without the support of excellent staff (and family) this is what could so easily have robbed me of my sense of self and sense of purpose, which are integral to having a life worth living.

 

Epilogue

This text is copyrighted to us and is a preview of the book released in May 2020: Surviving stroke: the story of a neurologist and his family. By Dr. Helen Kennedy and Professor Udo Kischka.

It is a combination of an experience story and a self-help book for the general public. So far the reviews have been laudatory, so we hope it will be a useful addition in the world of recovery from stroke.

Professor Kischka wrote this article about his stroke in The Lancet in November 2019.