Personal Views

My brain stem stroke

BMJ 1996; 312 doi: http://dx.doi.org/10.1136/bmj.312.7035.917 (Published 06 April 1996) Cite this as: BMJ 1996;312:917
  1. G F Grant

    I set out on the half term holiday with the family, blissfully unaware of the traumatic events that were to follow. We had borrowed a friend's weekend cottage and I went to bed early. My only medical condition was a persistent headache, but I had had headaches before as I occasionally suffered from migraine. I was aware of my wife coming to bed much later but there was nothing ominous about that. There then occurred the event that was to change my life for ever.

    I can recall what it was like going through the stroke itself. It felt like a desperate battle to regain my balance. I remember thinking that if only I could get things on an even keel then I would be all right. There was also a constant babble of voices all speaking different languages. I was admitted to the first hospital with only my eyelids moving. According to the admissions register I was in a deep state of unconsciousness—nothing could be further from the truth. I floated in and out of consciousness. I can recall the interminable discussion the ambulancemen had about how they would get me down the stairs. I was aware of the ambulance stopping while the men tried to make me more comfortable and decide which hospital to go to. It was difficult to make me more comfortable as I was curled in a fetal position. I recall the ambulance stopping in a layby on the outskirts of the town.

    I recall nothing of my arrival at the hospital but I remember the difficulty in moving me as I was examined. No one had an inkling of the cause of my rolling eyes, laboured breathing, and dark coloured discharge trickling from my mouth. I recall being wheeled through the bowels of the hospital to be given a scan. It was uncomfortable having to hold my head still while they got a good picture. They clamped my head, the nearest thing to torture I know. I came to in a freshly made bed with some flowers on the window sill. I had no idea what was wrong with me as my brain seemed to be functioning normally when I was conscious.

    I recall the doctors discussing the hopelessness of my case thinking that I was unconscious and thus unable to hear. I heard every word and what a depressing picture they painted. I wonder how many patients have given up the ghost having heard how unwell they were during one of these dialogues. Essentially the bridge between my brain and my body blew up. This left me mentally undamaged, my memory intact, my intellectual ability undiminished, and, so my family and friends assure me, my sense of humour in no way altered, but the only parts of me that could move initially were my eyelids. I was classified as tetraplegic with no speech. My right side is even more affected than my left, which leaves me more isolated as I was right handed before the stroke. I now have some movement in my left hand so I am able to write this on my computer. My memory has got much better as I can no longer write little notes to myself.

    The doctors were a bit quick to write me off. After the failure of the initial scan to show anything it was repeated three days later. This time a circular area the size of a 2p piece was clearly visible right in the brain stem, the death of the nerves being caused by the constriction of a blood vessel. My family was told in quite unequivocal terms that the stroke was unsurvivable. Yet here I am three years later living at home after 16 months in hospital.

    It was soon after my stroke that I was introduced to the pleasures of physiotherapy. The smell of that tweed jacket as I was transferred to that infamous tilt table will live with me for ever. On one occasion the physiotherapist tried to get me stretched out on a big orange ball without success. I also had a tracheostomy. The tracheostomy tube gave me a new weapon with which to attack all and sundry. My high velocity sputum blasted nurses and consultants alike. I had no control over when I coughed but they soon learnt to duck. The adhesions in the locality of the tracheostomy site caused contractures, which pulled my head position forward, but these problems emerged much further down the track. In the initial stages I was purely and simply fighting to live.

    I remember with joy when I made my first small voluntary movement. It was three weeks after my stroke when I squeezed my wife's hand with my left hand. I had seen the visiting consultant and he had dismissed all my movements so far as being involuntary. “They need to be voluntary in response to a command,” he said. In one fell swoop he had removed all our fragile hopes that recovery was starting.

    In the early days I had some speech therapy. The inactive muscles in my mouth and tongue were stimulated with ice, but a far greater response was produced with blocks made of frozen wine. It must have been difficult for either therapist to see much response but they stuck at it. I have heard a tape of me attempting to speak one year after my stroke and it was unintelligible. I have heard that all the recovery made by a patient who has had a stroke is made in the first nine months. What a load of rubbish. I am still progressing three years after my stroke.

    The stroke has left me like a baby in that everything has to be done for me. It is the nearest analogy I can think of. Now food has to be cut up. Bodily functions can make you feel like a baby. You have to get over the very human feeling that your life is no longer private and that is difficult. I am having physiotherapy to regain what movement I can and I hope eventually to learn to stand. Speech therapy has mobilised my tongue and lips sufficiently to enable me to swallow safely and eat a normal diet. I am learning how to speak literally from scratch. I shudder to think of those patients who have been thrown on the scrap heap because they do not have the determination and family support to fight for treatment provided by the scanty resources of the NHS. I have nothing but praise for the patience and understanding of the therapists. They seem to know instinctively how far they can push me at any time.

    The main difference from that of a baby is the memory of how it used to be, which is most frustrating. A non-functioning shell of a body. You have an itch but cannot scratch it. Those around you have to put up with your outbursts of sheer frustration. Speech is difficult. You know what you want to say yet all that comes out is unintelligible mumble. You try so hard, only to be met by a blank, uncomprehending stare. Yet despite this you have to keep going. Progress is not made rapidly—it is a long slow grind. You had better face it, you may not want to hear it, but it can take years of constant repetition. It is getting better ever so slowly. It is this slowness that I was unprepared for.—G F GRANT lives in Bedfordshire