Life After Stroke - A book by stroke survivors who have learned to live again

INTRODUCTION

In 1990 two QueenSpark authors who had suffered major strokes wrote, quite independently of each other, about their experience. At a performance event Irene Donald, from our Women Writers Group, read a moving poem about recovering the use of her hand. Margaret Ward, author of One camp chair in the living room, sent us a manuscript which described her own fight for rehabilitation.

We decided to set up a writing group of stroke people to produce a book for QueenSpark. Nick Osmond led and organised the group and further members were recruited with the enthusiastic help of Sister Jan Nowak of the Brighton Stroke Rehabilitation Service. Irene and Margaret formed a nucleus and they were joined by Marion Daniels, Kay Hind, David Morris, Dot Pippard and George Stratton. Al Deakin, a Queen Spark member whose father had had a stroke, was also involved. Sarah Townsend, Speech and Language Therapist at Brighton General Hospital, has kindly contributed a note on speech disorders, and we have included a contribution from Aline Harris, a stroke survivor who was not a member of the group, about returning to work.

We met weekly, with breaks for holidays, between April 1991 and July 1992, when QueenSpark decided to publish the collected writings in their Market Books series.

We are most grateful to the Red Cross and the WRVS for providing transport, and to Barbara Wood of the Brighton Stroke Volunteer Service for her valued help and support. We have been the subject of a feature in Hope, the national magazine of the Stroke Association.

It was a rich and exciting experience. People’s most urgent need was to talk about what had happened and what was still happening to them. However, we usually started out with a topic that everyone wrote about, so that gradually a body of writings grew up around some common themes, on which the arrangement of the book has been based.

At four meetings we recorded, and then transcribed, our group discussions, and selections from these are included in the book. The transcripts give an idea of the lively and
co-operative style of our exchanges and a lot of interesting points came up in the heat of discussion.

Obviously the group was chosen among stroke people who had made a good recovery and were able to write and to join in discussion. Some stroke people may never recover the full use of language, but we should remember that some of the people who have written this book were partly paralysed and unable to speak after their stroke. While there’s life there’s hope. If you are persistent and forward-looking your powers of recovery may be greater than you could have imagined.

We have written this book to help people who have had a stroke and their carers. We have not set out to provide medical information, although obviously people need this, and at the end of the book we give the title of a book on stroke, together with information on local health services and organisations where you can get practical and professional help.

But books written by experts cannot give the inside story. In this book it is the people who have had a stroke themselves who are telling what the experience was actually like, what it has meant to them, how it changed their lives, how they found the strength to survive and perhaps to grow, how they coped and are coping. We feel it is the stroke people themselves who can speak with the greatest authority and we hope their stories will bring real support and insight to those whose lives have been affected by stroke.

The experience of our contributors shows that stroke is not the end of life. They have had the necessary courage, persistence and faith in themselves, without (and this is important) having false expectations about the likely degree of recovery. They have made giant strides.

Working in a group has been very valuable. You get strength and comfort knowing you’re not the only one. Margaret found that sharing her feelings about her stroke with the others helped her to come to terms with them. She realised her feelings of uselessness were quite natural but that at the same time you can get over these feelings. She and Marion no longer felt so guilty about their persistent tiredness and if they needed a lie down would say to themselves, “Oh, maybe she’s having one too!” And members of the group have been an inspiration to each other. There’s the feeling, “Oh, if he can do it, so can I.”

The passages in italics (like this) are from recorded group discussions. The passages in roman script (like this) were written. Each passage has the speaker’s or writer’s name at the beginning.

THE GROUP

David Morris, born in 1915, was fortunate in his childhood in Walthamstow and Chingford, where his parents were immigrants from Blaenau Ffestiniog and Holywell. His father was a headmaster and his mother a qualified pianist. At his junior Mixed School, David was awarded the prize for “The Most Improved Pupil of the Year”, having previously been bottom of the list in most of the subjects. His sports were Cricket, Swimming, Chess and Rowing (Stroke).

He graduated in 1936 and gained his D.Sc. in 1959. After Apprenticeship with M-V Electrical Co., he became a Wartime Development Engineer and was head of a laboratory for Automatic Control Systems. Later, he was an Electronic Engineer at Furzehill Laboratories and designed the Magnetic Amplifier for the Smith Automatic Pilot, which is still in service. He has held University posts in Wales, England, Iran and Nigeria and has many publications, mostly technical, to his credit.

After the war, David married Marjorie, formerly in the Civil Service, and now deceased. Their son was born in 1950. He is now married to Dorothea, a Froebel teacher who ran a pioneer school in Sri Lanka. In 1981 they retired to Saltdean where David had a minor stroke in 1990.

He is now working on a play-way by which individuals and families can educate themselves. He feels education should “lead out” the human potentials that are already being nurtured within.

Dot Pippard nee Dorothy Schreiber was born in 1926 in the East End of London. She had a very happy childhood and at eighteen joined the ATS. After being stationed in England and Scotland she was posted to Egypt where she stayed for 15 months. She met her first husband, John Hebberd, in Cairo and married in England in 1948. They had a son in 1949 followed by two daughters. After thirty years of mediocre marriage, they divorced.

She was sixty-four and had been happily married to her second husband for nearly four years when she had her stroke. She is now almost fully recovered apart from slightly impaired eyesight and hearing and no feeling down her left side. She has resumed her previous lifestyle and continues to travel.

George Stratton was born near Clapham Junction in 1910. His mum was a good sort, she used her love to make the children do what was right and they had some marvellous times.

After a job with a builder in Kingston he worked in the sheet metal shop at Leyland Motors. Then he got interested in club cycling which became his work and his hobby. He was manager and later owner of a cycle shop in Wandsworth. At sixty-seven he sold up and retired to Morden, where he and his wife had some lovely years. When he was cycle racing he did twenty-five miles in one hour, five minutes and four seconds. He won a few gold medals but he sold them when he was out of work, to raise a bit of money to get some fags with.

Now he doesn’t smoke any more, but he used to smoke quite heavily up until the time he had his first stroke. After his stroke they moved down to Brighton, and since then he has had three Transient Ischaemic Attacks spaced out by about a year or eighteen months. This was ten years ago. He has difficulty in walking, his hearing is not too good and his eyesight has deteriorated, but that is due to glaucoma and overall he doesn’t feel too bad. He goes to a day centre on Wednesdays and finds it is useful in getting him out of himself.

Irene Donald was born in 1936 into a Brighton family of greengrocers, the Lillywhites, and helped on the market stall as a child. She left Varndean Girls School with six O Levels.

After office training, she married while working as a shorthand typist at the Brighton Borough Engineer’s Department, but the couple were very young and the marriage did not last. From 1964 she was employed as Chief Clerk of Student Records at the University of Sussex. In 1968 she married a Scotsman and in 1970 went back to the Council as an Administrative Officer. She moved to Cornwall in 1979, having obtained a job there.

After her husband died she completed an Open University degree and in 1987 moved back to Brighton where she had two strokes and a major operation. She has since had to relearn everything from walking to talking and is now writing her autobiography.

For her, the companionship of the group was important, and having a goal to aim for. Talking through the happening, the stroke, and the other traumas she has had to deal with over the past five years, as well as the group counselling which ensued, helped put it all in perspective.

She hopes that with her hesitant speech she acted as a catalyst, helping people articulate and come to terms with their own feelings and past hurts. Bringing out everyone’s experiences and reliving them has helped her to deal with her own. She has come to know herself better in the process.

Kay Hind, a widow, was born in 1922 in Brighton, where she spent most of her childhood.

She has one son, who is a freelance journalist. She left Sussex during the sixties and lived in various parts of the country, finally settling in Lancashire for sixteen years.

Her husband died in 1982. Two years later she returned to live in Brighton.

Writing has always been one of the pleasures in her life, so after suffering a stroke in 1989 she readily accepted when she was asked if she would be interested in joining a writing group for stroke victims.

Being a member of the group has made her many friends and has encouraged her to express her life-experiences and develop her writing capabilities.

Margaret Ward was born in 1916 in Rottingdean, where she spent a very happy childhood. She married in 1940 and had two children, Angela and Julian. Her husband Jack left her in 1960. After a few years a friend came to live with her, but he died of cancer twelve years later.

In July 1988 QueenSpark published her popular autobiography, One Camp Chair in the Living Room. Earlier that year Margaret had had a minor stroke, and she was to have a stroke in the springtime of each of the following two years. The second was a major one affecting her left side, but as part of her rehabilitation she started writing again, telling the story of the stroke and her hard struggle towards recovery. This writing is included in this book. Margaret also wrote a number of fresh memories of her teenage years and early married life, Memories of Rottingdean. She made a good recovery, but her third stroke (Spring 1990), though relatively slight, left her with uncertain balance and a feeling of muzziness.

After her three strokes she sometimes felt very depressed. Then in April 1991 she joined the Stroke Writers. This proved a reason to goon persevering, as when she meets other people with the same problems as herself, hers do not seem so bad. As writing has always been a great joy to her this gave her something to aim for. The group spent some very happy afternoons together and she didn’t feel so useless any more.

Marion Daniels was born in 1939 in Whitechapel. In infancy she was evacuated with Italian foster parents and theirs was like a second and more loving family. Her own mum was lovely but her father was a martinet and life at home was stressful and unhappy. She felt unwanted.

Marion married as soon as possible but had to put up with a loveless marriage for thirty years before getting a divorce. However she has four wonderful children and five grandchildren. She liked her work and has many, many friends.

A couple of months after her father’s death, her mother had a series of strokes and died within a few days. Marion had her own stroke whilst at work, in November 1990, and tried to return to “normal” as soon as she could, but found it extremely difficult.

Before joining the Writing Group she was isolated, feeling that nobody understood. She was afraid to say much, fearing intimidation and manipulation. But the welcome she received made her drop any barriers she might have been supporting. Oh, how she enjoyed listening to every person’s writings and the comments made on them afterwards!

It was not long before she was an integral part of the group and she felt and hoped she was giving as much as she was receiving. In March 1992 Marion had another stroke but made a good recovery.

Nick Osmond, a University Lecturer for twenty-four years, was born in India in 1933 and had the usual advantages and disadvantages of a middle-class upbringing: direct access to the ladder of British privilege and power, but an unhappy childhood and education in the all-male class-based institutions which form, or deform, those who are supposed to become the nation’s leaders. He gradually came to reject the values of the class he was born into and to align himself politically and emotionally with the working class.

He was married for twenty-six years and fathered two children who he is very proud of. Since early retirement at fifty he has tried his hand at many things, all connected with communication and perhaps part of a quest for community.

He started as a volunteer with QueenSpark Books in the autumn of 1989. Working with the Stroke Writers and sharing their humour, realism, warmth and courage in coming to terms with the devastating effects of stroke, has meant more to him than he can say.

THE DAY IT HAPPENED

Kay. When I awoke on a grey November morning in 1989, little did I know what lay ahead that day. Myself and two colleagues representing “Insight”, which is a mental health pressure group to which I belong, were going to a meeting at Polegate to discuss our various views and experiences with Social Service Workers.

This meeting was duly held and was successful. We broke for refreshments about midday. It was during this break I suffered a stroke which affected my short-term memory. I was brought home, my doctor promptly called. She then examined me and pronounced that I had just undergone all the symptoms of a small stroke.

All this information I have had to be told, as I could not remember it happening. Apparently I knew what I was doing at the moment in time, such as knowing my door key was kept in my purse, where I kept my phone book, and talking to my son on the phone quite reasonably, albeit with much repetition. I knew I had recently drunk coffee as the taste still lingered in my mouth. But as soon as all these events happened they were immediately lost forever. It was the weirdest day I have ever lived through in my entire life.

Apart from feeling very tired and having to curtail my activities to a minimum for three months, it left no further signs of distress.

From the moment I awoke till the time I drifted into a restless sleep that night, the hours in between remain a complete blank in my memory. To me that day just didn’t exist.

I didn’t know, that winter’s day
My memory would be plucked away.
Work in briefcase, must be right
As I am representing “Insight”.
About midday, or so they say
My mind it gently blew away.
Who am I and where are we?
Do I know you, and if so who is me?
The meeting’s over: “You were great!”
“What did I do for heaven’s sake?”
Found the key into my flat,
It looked familiar, down I sat.
I searched my topsy-turvy brain
And tried so hard to find the pain.
I talked and talked, or so they say,
The words would come, then float away.
There was no fear, there was no doubt.
What was memory all about?
I’d had a stroke, no more to say.
It simply “lost” me for one day.

Dot. I went out on Friday morning, my mind full of plans for the New Year. We were to go to Norfolk to spend the New Year with my daughter. We were then going to bring the grandchildren home with us, to take them to the pantomime at the Theatre Royal. I went to Churchill Square, doing the last bits of shopping in British Home Stores, when suddenly there was a quietude and I felt my feet go from under me. Being diabetic, I thought I was going into a coma, then I realised it was like nothing I had felt before. The whole of my left side sagged. Surely I wasn’t having a stroke. The girl in BHS called an ambulance. I was wheeled out of the shop into a waiting ambulance, quite an experience!

At the hospital it was confirmed that I had had a stroke. The doctor telephoned my husband in London and he was with me in about an hour. Then my son and daughter arrived from Norfolk and my other daughter and granddaughter from Hampshire. I was so pleased to see them.

I had completely lost the use of my left side, arm, leg, hearing and vision. It was a most disturbing experience. My left hand didn’t feel as if it belonged to me. I had to find my shoulder and follow my arm down until I found it. I am hoping that sensation will return. My loss of vision frightens me most. I feel that with physiotherapy I can get my limbs working again, but there is nothing I can do about my vision and hearing. I just have to hope they will return.

My husband and family have been a great comfort to me and I am determined to get better for their sakes as well as my own.

George. I was in my garage at the bottom end of the garden mending a pair of shoes and happened to drop the pliers on the floor, bent down to pick them up and just keeled over onto the floor, half in and half out of the garage side door. My right arm and right leg were paralysed – and then it started to rain.

I called for help but no-one heard me so I managed to drag myself into the garage out of the rain and just lay there helpless for a while. Gradually after what seemed like about twenty minutes my voice began to come back and eventually I found I was able to move both arms and both legs so I stood up and walked back to the house where my wife and her uncle were watching television. I told them what had happened and she insisted on calling our doctor who came along and was able to confirm, after a few simple tests, that I had actually had a stroke.

Following that experience I cut down on my cigarette smoking and got down from twenty a day to five per day. I realised I had to take care of myself a bit more than in the past and tried to avoid stress and heavy work.

However, about twelve months later, having returned from the local DIY shop, where I had a Saturday job, I sat down to my evening meal and, having finished, relaxed for a while on the settee. I had not been thus for very long when I keeled over with another stroke. This time it was my left arm and leg which were paralysed. My wife dialled 999 and before long I was in hospital and receiving treatment.

I try to remember what my thoughts were at the time of my strokes but to no avail. I only know that the thought never occurred to me that I would not get better and indeed that is what happened.

I have had two small strokes since the major ones but they were relatively minor and I recovered completely after resting up for a short while.

STROKE & STRESS

Margaret. I suffered a stroke in the springtime of three years running.

The first one was in the spring of 1988. I was at my son’s house and they were handing round cups of tea in the middle of the afternoon, with biscuits, and I went to put my hand out to take a biscuit from a plate, and it dropped on the plate and I slumped over the settee, and I heard my daughter-in-law’s mother say “Oh, she’s had a stroke.” And I came back and I was all right. I don’t know how long I was out for, but they just said “Promise us you’ll go to the doctor tomorrow.” And I did that and he sent me to the neurologist to have a scan and I didn’t feel any ill effects at all, nothing. But the neurologist said to me “I’m sorry to tell you that you’ve had a slight stroke,” so I said “How do you know?” So he said to the nurse “We’ve got a right one here, wait a minute, I’ll show you.” So he got the picture they had from the scan, and he said “There’s your head, look, there’s your brain, and you see that big black bit there? Well that’s dead and it’ll never come back.” And it never affected me in the least.

My big stroke happened a year later. My ex-husband had decided to come home for three months from New Zealand after twenty-nine years away and I had offered to have him to stay for part of that time. We were going to make up for the lost years and try to find some happiness together once more. I was getting very excited as the months crawled by and his letters told me he was feeling the same.

Two days before Jack was due to come I was taken ill. It was such a lovely evening and the bedding plants had arrived that morning so being the keen gardener I am and the ground all prepared, I went into the garden and started. There were three boxes of antirrhinums among many other boxes of plants, fifty in each box. I put in one hundred antirrhinums each side of the garden path. Normally I would have carried on and planted some more but I came over very tired as it was so hot. I had not bothered with dinner but still was not hungry so just had some biscuits and cheese. By this time it was bedtime so off I went and fell asleep very quickly.

In the morning I woke to find I could not move in bed, the whole of my left side was as useless as a log. The paralysis was completely down the left side. I lay there for a while very frightened. I knew it was a stroke and as I was in the house alone had to get help somehow. My phone was downstairs and from that day to this I shall never know how I reached it. I couldn’t remember any phone numbers and didn’t think of looking for them. Quite suddenly my daughter’s number came to me but when I tried to dial found my glasses were upstairs. I dialled the number by guesswork and this was hit and miss. Eventually my daughter answered and then to my amazement my speech would not come properly but I made her understand and she phoned her brother as he was nearer, in
Woodingdean. He duly arrived and called the doctor, and my daughter and son-in-law came. When the doctor arrived he confirmed I had suffered a stroke. My first fear was that I might have another because of the slight one I’d had the year before.

When I had the big stroke my friend George who lives here was on holiday in London with his sister. So I was all alone. But he came back and he’s been looking after me ever since.

My third stroke came in the spring of 1990. I had been having bad headaches for about two weeks, in fact my head felt like cotton wool. I could not get going this special morning, having fully intended to dust my bedroom, but ended up cleaning the collection of teaspoons as it was a sitting down job. A few were ready and I was on my feet hanging them in their rack when my head started to spin and my right arm and leg went completely useless and I ended up hanging over the arm of the settee. I tried to say “stroke” but the word would not come. In about two minutes I was back to normal, but not before being very scared.

My friend called the doctor and he remembered I had experienced the same thing about two years previously so went back to the surgery to consult my notes. The brain scan I had had then showed that part of my brain had died but that had no lasting effect so I hoped this one would prove to be the same although I felt extremely tired and everything was an effort, also I still feel very giddy at times.

Marion. There was a very big argument between members of the family on the Saturday before it happened, and things got progressively worse. Actually the Monday is quite a blackout, I can’t remember much about what happened, but on Monday night a member of the family said he’d had enough, and he wasn’ t one to have alcohol, but he’d consumed a whole bottle, and he’ d poured boiling hot tea over himself and driven off into the night. I felt terrible on the Tuesday and every time the phone rang in the office I kept thinking she’s going to say “He’s OK, he’s OK.” But she didn’t and as soon as I came home from work I called her and she said “I don’t know where he was phoning from but he’s OK.” And that was that.

On the Tuesday I remember even when it was break time I just didn’ t want to speak to people. I couldn’t be bothered to eat in the office with my colleagues, I was really incommunicado and I just sat in the canteen. Normally I would just have thirty minutes for lunch because I was flexi time, but I had my entire lunch hour.

And then the stroke actually happened on the Wednesday. I don’t remember too much, but I remember it just being a normal day, and I’d made my soup in the canteen, when it happened. I’d taken the soup to my desk and sat down, not where my terminal is, another desk. It probably sounds quite conceited, but I’ve got a tiny little dental plate and when I have my lunch I tend to surreptitiously put it in a tissue in my drawer. I took my teeth out, put them in the drawer and took out my roll. But it was then that it happened, right in my left arm. Suddenly without warning I had a dreadful sensation down my left arm, I thought in my mind that I’ d had a terrible pain down it but when I wrote about it, I put that my arm went like lead. I lost my balance and fell off the chair and I remember I hit my head, apparently on the filing cabinet, on the way down. I realised I couldn’t move and all different people came rushing to me and I didn’t realise then what had happened. To me it seemed as if I was having a bad dream or rather some sort of nightmare.

My colleagues (most of whom are first-aiders) did the necessary. And when they started to ask me how I felt, was I feeling sick, etc, I realised I could not reply and I don’t know if I drifted off or what it was, but I think the frightening thing was that I was fully conscious. And when they said “Oh you’re going to go to hospital,” all I could think of was that my teeth were in the drawer and I kept pointing, and they said “Oh she wants something from the drawer.” And I thought in my mind that I’d crawled to it but when I saw one of my colleagues afterwards he said no, they’d wheeled me to it in a chair. And I remember somebody said “Oh, she wanted her tissue.” So despite all that happening I was vain enough to want my denture and I can remember putting it in my bag but other than that I can’t really remember.

It’s strange how I can remember that bit really clearly, but lots of other things I can’t recall. It just seemed like a sort of a bad dream, every day seemed like a bad dream, really, extended into a nightmare.

One of the members of my family felt she was responsible, at least at that time, but I wouldn’t like to say that she was. But during the argument I was being bounced a bit like a ping-pong ball between them, l couldn’t really believe what I was hearing. I wanted them to just calm down. And then when it was over each party sort of said “Well why didn’t you back me up?” But I didn’t take sides.

I’ve always been one to play my cards close to my chest and as you know I have this outward going personality. I’m not a Jekyll and Hyde but when I go to work I leave any problems at home and shut the door and that’s it.

And as I said the stroke happened on the Wednesday, and the argument had happened on the Saturday, and I just can’t really forget it. And of course it’s brought out all these other awful things that had gone on over many, many years that I’ve never even thought twice about before. Eve Dale, the stroke nurse, said to me, “Given time, you’ ll be able to put them all back in their little boxes, as they were before you resurrected them.” She actually said she was surprised that with all the stress I hadn’t had one sooner. Does anybody else feel that their stroke may have been stress-related?

Margaret. I have had a good deal of stress and feel quite sure this brought on my strokes.

A TROUBLED TIME

Irene. On 13th April 1987 I had moved back from Cornwall to my home town of Brighton. I had a place on a degree course to study history at Sussex University and was looking forward to embarking on a new stage in my life.

Looking back in my diary, it says “poorly” all that week. I remember I’d been walking a lot, so pleased to be back in Brighton, but I suppose I knew there was something wrong with my tummy as I had been bleeding off and on for eighteen months and had been very tired at times since my husband’s death four years earlier. In a way I felt I’d known for a year or so, but I was very frightened of going to hospital.

But on 28th May I was in a good frame of mind. The entry in my diary was for a meeting at 7 pm to meet my cousin Roy, a Surveyor, at a house I had started to buy. It was a two-bedroomed bungalow in Patcham with a level entrance to the garage, buses stopped at the top and bottom of the road. I knew Patcham having lived there as a teenager and later when I left home to marry for the first time.

On the table was the address of a doctor I was going to phone, as I was between homes and hadn’t been feeling well since moving back to Brighton. I had a nice flat rented for three months with the option of staying longer if I didn’t get a house before I started at the University in September.

That morning I did some ironing with a travel iron I hadn’t used before. I felt I had to sit down and I slumped on the settee, closing my eyes. Waking up, I saw the iron on the floor on the opposite side of the room. I don’t know if I turned it off but realising I wasn’t well I got my bag, locking the door behind I suppose, and rang the bell next door. There was no reply, so I went downstairs supporting myself on the bannisters. Mr Roberts in the flat below answered and I suppose I must have said “I’m not well”. He led me to a chair and gave me a glass of brandy which I couldn’t face and put on the table. All of a sudden I fainted or collapsed. Mr Roberts rang for an ambulance which came quite soon. I was sitting on an upright chair dimly aware of what was going on.

At the Royal Sussex Casualty Department I was laid on a bed and I think the doctor said I had had a stroke. I came round a bit while they were seeing what to do with me. I rummaged in my bag and indicated that my brother-in-law was the one to be contacted. I tried to write the name of my cousin King in a notebook as a local relative. I suppose I couldn’t speak or indicate my tummy because the doctor didn’t know what was wrong with me.

Soon my neighbour came and we were trying to contact Roy who wasn’t in. So I was carted off to Bevendean Hospital and put in the ward where my mother had died, full of fear of hospitals but by now reconciled to let someone worry over me for a change.

I’m not quite sure what happened, because I remember being urged to walk again and then being very, very tired one day, and that’s when I feel I had a second stroke which was the massive one. Perhaps they got me doing things without really realising there was something wrong with me inside. But anyway I would probably have had it anyway, and that’s when I was supposed to have nearly died. But they still didn’t know really what was wrong with me because I suppose I’d never said anything to anyone. I remember having a sort of scan in my tummy and on my head, and they looked to see if my heart and lungs were all right before I had the operation to remove my ovaries. I didn’t know what was happening really. And anyway they operated and so I must have got over the second stroke for a bit.

The shock of being in hospital was immense and the fear of losing my bungalow was distressing for me. I was vaguely aware of my friend Carol who had come up from Cornwall and I thought from the conversations around my bed that I was going to be taken back there. The thing that caused me great concern was that my relations didn’t hit it off. I wanted to be a sponge soaking up their love for me, but all I felt were worries, and nearly died.

On the day I didn’t die I was floating, swimming in my lane, bars along the side. Voices murmuring, I could hazily see my in-laws, more voices, I knew I was ill but with nurses all around.

I felt safe and would leave it all to them. In this ward where mum had died, a big face peered down. Carol who I used to go swimming with got in with me with her black swimsuit on, swimming in the next lane behind the bars.

Voices murmuring, there were other people seeing what to do with me. I heard or imagined I was going to a private hospital at Rottingdean where one of the doctors worked.

I floated. The people around the bed were worried. No feelings of love from the couples around my feet, just worries. Then I thought I was in an ambulance for four days and nights. Carol must have been taking me to the hospice where my husband died. I was going to be with him.

Later as I looked out at Brighton I thought back to my childhood when I was happy and Mum and Dad loved me, but not for long. As I had begun to assert myself as a bright child I was no longer the centre of the universe, and then Dad had wanted to send me away to School or give me a Dutch refugee sister, both of which never materialised, but which lessened my confidence to be loved for myself alone.

And I did what we’ve all done, you know, persevered, and I think the day before I came out of hospital they just said they’d removed my ovaries, and that was all they said.

The three months I was in hospital, my in-laws and my cousin didn’t seem to get on and my cousin sort of thought… I was now homeless, as my flat hadn’t been rented for a further period, and I went to Knowle House in Hove, an old persons’ home, a short-stay unit, where I learned to fend for myself with the aid of the health and social services staff, friends and relations. They’d cleared my flat, and I’d never been without a home before, and my brother-in-law came from Scotland. I didn’t feel they left me enough money. I think they wanted me to go up to Glasgow to be near them, I’m not quite sure if it was for a holiday or to live, and my friend from Cornwall said the same, but they probably didn’t know how well I would get on. But I felt I’ d come back to Brighton, and it was home, I didn’t want to be carted off somewhere else and eventually I was able to buy the bungalow that I’d looked at.

AFTER-EFFECTS

Sarah Townsend (Speech & Language Therapist). There’s dysphasia, which is due to damage in the language centre in the brain; there may be difficulty in understanding what people say or what you read and/or problems in speaking and writing. Often there is a difficulty in finding words – when you can’t think of the name of the thing you want to talk about.

There’s dyspraxia, which isn’t due to muscle weakness, but there is a difficulty in organising the sounds of speech in the right order. The muscles still work (as in eating or drinking) but the instructions from the brain to the muscles are not working properly.

And then there’s dysarthria, where the muscles of speech have been affected, causing weakness of voice, tongue, lips. It doesn’t affect the language at all, but the speech can sound quite slurred, sometimes very quiet or too loud; it can also be difficult to eat or drink.

Margaret. After my stroke I thought I was speaking and I wasn’t. You know, they sort of humoured me, my family humoured me. I wasn’t making a sound, nothing was coming out, but my mouth was moving. Now, I’ve got partial paralysis of the throat…

Barbara Wood (Organiser, Brighton Volunteer Stroke Service).
…which is probably slight dysarthria then.

Margaret. I find it difficult to swallow and my voice won’t come out. I used to have a louder voice, it’s more quiet now. I can’t bring it out, I can’t throw it.

Kay. After my stroke, which took my short-term memory away, I knew what l was going to write, but the word that came out, not every sentence, but occasionally, wasn’t the same. I wanted to put “there” and an entirely different word like, say, “went” would come out. I don’t get it a lot now, except when I’m a bit tired, and then I think, what did I write that for, it’s not what I thought in my head.

Barbara. Yes, this is dysphasia.

Irene. The first thing I remember trying to learn to speak was the nurses’ names. I sort of said “Good morning, Miriam,” trying to remember each one’s name every day. I think you have to repeat things. And there has to be some sort of incentive to do it.

Nick. I was speaking to another stroke person today and he has difficulty in speaking. He can speak, but he needs time, he needs people to pay attention to him and to be sympathetic, but apparently his wife is always screaming at him, and he told me he never speaks to her at all. You need to have someone who’s listening, and who’s got time to listen.

Irene. I speak to people on the buses or in a cafe without undue worry. I feel it’s not imposing too much trouble on strangers if I’m slow or incoherent.

*
Dot. People who suffer strokes are often surprised how long the tiredness persists, I know I am. You just haven’t got the same strength. I have often wondered why and have come to my own conclusions. Before a stroke the brain often switches to auto pilot. Most things you do without really thinking about them. After a stroke that doesn’t happen, your brain has to concentrate and work really hard all the time, never getting a rest. That in my opinion results in the absolute fatigue we feel.

Marion. Yes, I have this fatigue that seems to plague me persistently. I saw the doctor and he gave me something for it, but it didn’t really make very much difference at all. And the fatigue is out of all proportion to what I’ve been doing. But no two days are the same. Sometimes I can go all day without having a sleep, but come eight o’ clock at night and I can’t keep on my feet. I feel personally that I’ m really quite strong, but it’s my body telling me that you’re not as strong as what you really think you are. I can fall asleep half-way through the morning or the afternoon, it doesn’t matter whether I’ve cleaned the house or done washing and ironing, or even looked after the grandchildren.

One afternoon I was looking after my two little grandsons, we were just sitting there, watching a video of Pinocchio, and I think I was asleep for most of it, thank goodness the baby was asleep too, I’ d given him his bottle. But I just couldn’t keep awake.

Margaret. I’m glad you do that, because I do, and I do it without realising, because in the middle of a television programme, I just fall asleep, and then I must wake up and watch the other part of it, and l think “Well, when did that happen, I don’t remember that happening, I must have been asleep.”

Marion. That’s why I video most things because invariably I’ve dropped off somewhere along the line, and I can wind it back. Do you find that even when you’ve had a good night’s sleep it doesn’t make any difference, you still need to doze during the day?

Margaret. Exactly, exactly.

Marion. Because I keep thinking I should be over that by now, at this stage.

Nick. Yes, but there’s no “should”, is there?

Margaret. It’s two years since I had my big stroke and I’m still like it.

*
Margaret. Oh I get so depressed in the mornings, I don’t know what to do with myself.

Kay. That’s right, that’s right.

Nick. Do most people get depression in the morning?

Kay, Irene & Margaret speaking together. That’s the worst time for depression. When you first wake up, and everything floods in and you think you’re starting another day, and you think “Well I can’t.” And everybody that’s had anything to do with depression, they all say it’s in the morning. So you go to bed sometimes, when you’ re in this depression, and tuck under the clothes and hide away from the world and you’re safe, if you’re in bed and tucked under, you’re safe. Do you know every night when I go to bed I think, “Thank god that day’s over, I’ve got nothing else to worry about.” It’s lovely, isn’t it? I love my bed.

*
Margaret. I find I am very sensitive to humour or sadness. If I find anything very funny the laughter just won’t stop, and sometimes humour touches me when no-one else seems to notice it, and they look at me in bewilderment.

I was trying to do some gardening with one hand and a gammy foot, when I suddenly fell flat on my face, and being in a border there was nothing to hold on to. There I was flat on my face, so I rolled over and tried to get up but all I could do was roll over and over. I was laughing so much it was hopeless and I wondered if anyone was looking. Suddenly the gate opened and in walked my friend, we were both laughing so much that even then I was still sitting on the grass.

It takes very little to make me cry, and if the conversation turns to a sad note the tears just flow. Also music touches me and I have no control.

If something from long ago or a special moment in my life comes to mind I can feel something which starts in the throat and my eyes just fill up and overflow. I wish I could control these feelings as they make me feel so conspicuous.

Irene. When I was in the Old People’s Short Stay Unit in Hove, at the end of summer 1987, the rose garden seemed wonderful, as I never thought I would be able to see that day, and then a little cat came by and I sniffed a bit because my two cats were still in a cattery in Cornwall from when I moved back to Brighton. Then I had to laugh at my efforts to speak to him. I couldn’t say “C’s” or “K’s”, for “kittens” or “cats”.

So I just said “Pussy” and cuddled him.
*

Dot. After I had had my stroke and was safe in a hospital bed I realised I could not find my left hand. I’d lost all feeling in the left side of my body and I didn’t know where my hand was.

I went on a tour of discovery. I started at my shoulder and worked my way down my arm. The first time, I found it behind my back between my shoulder-blades, at other times it would be between my knees, trapped between the bed and the locker, in all sorts of odd places, and at no time could I feel where it was.

When I got home was when the fun really started. I had lost vision in my left eye and could not see what the hand was up to. I would take off my nightie to wash myself and I would find my left hand still clinging to it, taking it into the water. It could have hold of things I didn’t know it had hold of and then drop them. It would knock dishes to the floor. I likened it to a naughty child who got up to tricks because it couldn’t be seen. When I was buttering my breakfast toast it would dip its fingers in the butter and if I didn’t notice what had happened would smear butter all over the work surfaces. I would try to get it to carry papers for me, but when I reached my destination I would find that they had been scattered in my wake. I would give it my glasses to hold and it would let them slip from its grasp. In exasperation I would cry, “I don’t ask you to do much, why can’t you do the little I do ask you?”

It is really weird having a part of you that doesn’t belong. I often spoke to my hand and my five year old granddaughter was so perturbed that she bought me a glove puppet. She probably thought I would appear less nutty if I was heard talking to a puppet.

I decided to treat it as teachers will sometimes treat naughty children by making them monitors and giving them more responsibility. I began giving it more to do. I let it open cupboards and doors, turn on light switches and carry things, provided it was helped by its friend the right hand. Happily it seems to be responding, although it occasionally lapses into its old ways. I hope some day it will be reconciled with the rest of my body.

David. Do you get any tingling in it? I mean do you get any sensation at all?

Dot. No. I just don’t know what’s happening. I keep hoping it’s going to come back

Margaret: My naughty hand’s my left one, luckily, so I can write. It keeps dropping onto things, knocking things over and all that sort of thing, and it does annoy me!

Dot. “Why am I feeling so funny?” you think. I do quite a lot of exercises, I lay on the floor and do bicycling and when I drop my hand down it just seems to touch the floor a lot sooner than you think it should do, as if there’ s a hill there. And I can’ t feel my foot. I don’ t know whether it’s on the floor or not. I wear sort of slip-on shoes and I suddenly think “Oh, what’s gone wrong with me,” one of them’s come off or gone sideways, I have to look down and see what’s happening to it. I don’t know whether my slipper’s on or off, I was trying to put a shoe on over my slipper the other day (laughter).

Kay. No feeling at all in it, but you can walk on it.

David. Well I stood up against a heater, and the next day my wife said, “What’s the matter with your leg?” I’d burnt myself. Great big scar on the leg, I never felt it. And it took them about a month to get that right, I was having the district nurse in dressing it every two days. I didn’t know a thing about it. And of course now if something is on the stove I feel it with the good hand and pick it up. I can still not get the right temperature, sometimes it feels ever so hot and it’s only just warm.

George. With my first stroke it was all down the right side, and I couldn’t move anything on that side. I was laying on the concrete, just outside the garage and I managed to drag myself in somehow and took all the skin off this elbow, on the concrete, in fact it was right down to the bone almost. And I didn’t feel a thing. I was telling myself’ to get inside because it was beginning to rain.

David. Because that is the big problem with the stroke. You’ve got this whole side and you can’t get it to obey you.

Dot. Like a telephone wire breaking really, isn’t it?

David. Yes, but the problem is there even with a perfectly healthy body, you see. My hands are not much affected, but I couldn’t separate my fingers with this hand (the “good” hand) at all. But I can teach them to do it. And if you can learn to do it for the healthy hand, then you may be able to do it for the affected limb somewhere else.

George. Or if you can do something with the good hand at the same time, move them both together (demonstrating symmetrical movement, both hands passing through hair), that helps, like if you’re brushing your hair back. I can manipulate my bad hand easier if I repeat the process with the good hand at the same time. So you’ve got to command it specially.

Marion. But it never feels the same, to me. I know when I first started to get back to cooking, things like that, if I was pouring from the kettle, I thought I’d already reached the teapot and of course I hadn’t, sometimes I’d pour the water over my hands. It’s the same with the cooker, I thought I was nearer the thing than what I was, or it was further away than what it was. I had quite a lot of burns. And the same in the beginning when I ran a bath when I was on my own. I’d put my foot in and not really realise it was so hot until my foot was bright red, not at scalding point, I might add, I wasn’t that stupid, but I still didn’t realise that it was that hot. It was only the once!

Nick. I think the whole question is what David’s been saying about how you teach your body. George suggests if you do an action symmetrically, one hand will imitate what the other one is doing.

Dot. I find actually talking to it helps, rather than passing silent messages, I sort of look at it and say “Hold on to that!” (Laughs). I find great difficulty in holding a newspaper. I think I’ve got it and it all goes on the floor. The mess my newspaper gets in, it’s dreadful.

Kay. So does mine.

Marion. So you go for the tabloids only (laughter).

Dot. I suppose it’s because you can’ t feel you’re holding it, therefore you don’t feel when you’re not holding it, that’s the problem.

George. Yes, and I have difficulty letting go of things. (Demonstrates with finger hooked through handle of tea cup). You know, if I pick up a cup with my left hand, I have a job letting go of it.

Margaret. It doesn’t slide out the same, does it? It stays bent.

George. I often pull the cup off the table and it goes on the floor.

Marion or Kay or Dot. So straighten out, finger.

David. It does call into question the idea of the nervous system linking with the limbs. You know, you’re supposed to have effector nerves which make the fingers do things, and receptor nerves or something that make you feel where your limbs are. And the common idea is that you use one or the other. But if I try to do this (separating the middle from the ring finger while keeping the others together), how do I eventually get the message across? I can’t obey, and I can’t command obedience. Where am I anyway? Up here in this head, or down there in those fingers? So I am trying to introduce a third element, you see, I’m saying, “Well, there’s some sort of humour that does it.”

You have to be in the situation where it’s neither this way nor that way, it’s not giving commands, not receiving commands, but you are reacting to a situation where the logic is not clear-cut. There’s something beyond logic there. Things are being tried out down there, things are being tried out up here, and then they sort of click. That is a little bit like creating a hypothesis or something. You can of course think with your hands, if you’re an artisan or a potter for example, trying out different ways of doing something.

You also gesticulate with your hands when you’re trying to get words out. So I’m working on the idea that your speech is connected with your fingers, and also your formal thinking, your creative thinking, is connected with your fingers, because you’re trying to find a solution, which is not a routine solution. You’re trying to find a new solution to a new situation and you’ve got to juggle around with it. And eventually it clicks. I can now do that, you see (separating his fingers further than he could a fortnight before) because myself down there and myself up here…

Margaret. …have got together…

David. … they are now er…

Dot or Marion or Kay. …compatible…

David. …compat… (laughs), understand each other a little bit, you see.

DAVID’S DIY

Nick. David has written a detailed article which describes a system he has invented for taking control of your own exercise programme and which he hopes to have published in a professional journal. He asked me to write this account of his ideas, to which I have added one or two little ones of my own.

As a stroke veteran David knows that his body has had to re-learn certain movements and actions, and that the best way of carrying this on is through a course of appropriate exercises which you have to learn to perform automatically. In other words “learning in the brain” should lead to “learning in the body”.

The first stage is learning the exercises during the course of the physiotherapy which is usually necessary in recovering from stroke. But the time must come when the physiotherapist has done all they can and the stroke person must manage by themself. All too often, once people have got home from hospital they stop doing their exercises and recovery may be slowed down or even halted.

David, using his skills as an engineer and inventor, has worked out an ingenious system for overcoming this difficulty.

The first problem is that each stroke person has their own special needs, and it can be harmful or dangerous to do the wrong kinds of exercise. But it would take too long for the physios to sit down and write out a programme tailored to fit each individual. The solution is that physiotherapy departments should have an “exercise dispensary”, a comprehensive collection of cards each of which contains clear instructions on the performance of one distinct exercise. The physio will then select an appropriate set of cards for each patient and use them in teaching the person how to do the exercises. A computerised system would allow physios to adapt the cards to their individual patient where necessary. If there is a carer around, they could be involved at this stage. The cards should enable the stroke person to remember the way the physio showed them how to do the exercises.

David observes that the exercises will be designed, not so much to turn you into a “keep fit” fanatic and build up strength and stamina, as to develop flexibility and control. They are more like routine body movements similar to the flexing and stretching done by dogs and cats when rising from sleep. There is no need to make a big decision to “do your exercises” for a fixed period every day. In fact this is the kind of unrealistic aim which tends to go the way of certain people’s New Year’s resolutions! David’s plan is that the exercises are fitted into odd moments throughout the day, so they become part of the natural rhythm of your life.

There is still a problem of motivation, but the scheme solves this neatly. It also ensures that the stroke person will work through their programme systematically, but almost without noticing they are doing it.

Anyone who has smoked will know that you often used to light up precisely at those odd moments when you’re just having a little breather, before you get on with the next thing you ought to be doing. Basically, you are looking around for some little displacement activity. Now, David’s brainwave is that, instead of reaching for your packet of fags on these occasions, as a nicotine addict does, you turn into an exercise addict by reaching for your pack of exercise cards.

These are the cards selected for you by the physio covering all the exercises you need to do regularly, whether it be every day or every few days. They may be in a special order, if that is important, or they may be shuffled so the order is random. On the bottom of the deck you place a “monitor card”, which may carry general information and instructions, to help you keep track of all the others. When the first odd moment arrives, remove the top card and perform the exercise it describes, then return the card to the back of the pack. The process continues until the monitor card arrives at the top of the pack, which tells you the course of exercise is complete.

The format of the cards is not important, but they should be stiff enough to be propped up so that they don’t have to be held and reading glasses can be worn if necessary.

FIRST STEPS

George. I don’t remember what the hospital treatment was but do remember my rehabilitation exercises which included pedalling a device similar to harmonium pedals and, later, picking up balls of wool and transferring them from one carton to another. Later I was encouraged to climb and descend four wooden steps. Later still I was asked to fill a bottle with water from the tap, light the gas hob and, when the water had boiled, make some tea and pour it into cups and add sugar and milk. Soon after this I was allowed to go home. After a while I found myself able to drive my car and do one or two jobs about the house, such as painting and a bit of woodwork and some gardening. The latter I managed sitting on a low wooden box and digging with a trowel.

Irene. I felt I was being bullied at one stage, when the physio said “You have to go through the pain.” I cried. I’ve never wanted pain, never been sporty, had any major illnesses until now, never been away from home for more than ten days’ holiday. I couldn’t see the point of pain unless there was an incentive. Your attitude depends on your temperament and upbringing. I think I had learned to be dominated and then spontaneously kick out against what I didn’t want.

Dot. I lay in the Royal Sussex Hospital for two weeks, getting more and more frustrated.

I was receiving no physiotherapy and I knew that if I was to get back to any kind of normality, physiotherapy was the only way. It was not anybody’s fault, there is an acute shortage of physiotherapists and during the winter they are urgently needed for people with chest problems. Eventually I “blew my top”, someone took notice. A doctor from Home Ward came to assess me and decided I was “a suitable case for treatment.” Home Ward is a Rehabilitation Unit at Brighton General Hospital. It is a specially built unit with wards over a physiotherapy gymnasium. The wards are informal and the atmosphere is very conducive to recovery. Now it’s Spring 1991, a few months after my stroke, and I am receiving physiotherapy from Pippa, the physiotherapist assigned to me. I am actually, as well as metaphorically, standing on my feet again. I’ve still got a long way to go but I feel as if I might get there eventually.

Since I have had my stroke I have been in a wheelchair. This has not been a happy experience. My heart goes out to young people who have to be in wheelchairs. It is bad enough at my age, but I’ve had a lot of life and it’s been pretty good. It’s the complete anonymity of it. You are no longer in command of yourself. You have to wait for someone to move you. Often you are left to sit.

It’s as if you are invisible. Because of the skill and dedication of Pippa I will soon be out of mine. It has certainly given me a new perspective on life which I hope I can use to help others.

Although I am now walking unaided, my head, my arm and leg feel as if they are encased in concrete. I’m hoping that feeling will eventually return.

When I first knew I had had a stroke I thought that was the end; but because of the skill and dedication of the hospital staff and my own determination, I’m well on the way to being back to normal life.

Dot’s tribute to Pippa, written after her recovery. She had just returned to England from Australia where she had been treating sport injuries. At last I was going to have physiotherapy to help me on my way back. Right from the first I liked Pippa and she seemed to take to me. During the weeks of treatment we built up a good rapport. She was very strict with me. I was not allowed to slouch in my chair, she would bawl “What do you think you are doing?” At times I felt she treated me as if I was one of her Australian rugby players, but I thrived on it.

She seemed to place most importance on teaching me to get and maintain my balance and I found that very beneficial. While other people were given walking aids, she said to me, “You’re not having an aid, you’re going to walk properly.” When I was walking on my own she would place a full-length mirror at the end of the room so that I could see my faults. She told me to get down on the floor and then taught me how to get up, an invaluable lesson. I had to walk on my knees, backwards and forwards. I did all sorts of exercises, all aimed at strengthening my legs. She did not neglect my hand and arm. I had many exercises for them. I would often have to stand by the bench to do them, thus improving my balance and stamina.

We became a mutual admiration society. Our parting words to each other were “You’ve been marvellous, you’ve given me so much confidence.” I had given her confidence to go on to treat other stroke patients and she had given me confidence to go out into the world once again. I will be forever grateful that Pippa was assigned to me.

Kay. I shall never forget when I came out of hospital, I went to my sister and her husband to convalesce, I had to go out every day and walk, I was only allowed to walk a hundred yards and no further. And my brother-in-law, out in the country, marvellous they were really, he’d bring me out and sort of measure a hundred yards for me to walk, he said “You’ve got to go as far as there, that hedge there, no further, and back, that’s fifty yards there, fifty yards back.”

Margaret. Just after the stroke occurred, a state of apathy then took over, to sit in a chair and doze and be waited on was heaven. My mouth dropped to one side and I dribbled especially when drinking and had to use a kitchen towel for a bib. The district nurse came in for two days and washed me and did all the necessary ablutions including a suppository and then a physiotherapist came weekly and a stroke nurse every day giving me exercises to do to help my hand, arm, leg and feet. It was an effort to move any of these limbs.

My vision was impaired and I could only use my right hand. The whole body felt very heavy. New spectacles helped the vision, exercises helped the left side of my body and also with the apathy.

One day she came in with a zimmer to aid me to try and walk. With this I could put the right foot forward and bring the left foot up to it by shuffling. She spent a lot of time trying to put the left foot forward whilst I was leaning on the zimmer all the time. One day I was sitting in the lounge when I thought, “I will walk to that door without aid even if I fall over.” Anyway I made it and called to my friend who had looked after me so well, “Look at me.” My friend, who was in the garden, looked inside and was afraid to move in case I fell but gradually got me to a chair. I said, “Get rid of that zimmer, I will never use that again.” It was slow work but I progressed from room to room and hanging on to the bannister rail with both hands went one stair at a time upstairs. My speech was coming back slowly, the power would not come behind the voice but they could hear me, swallowing was difficult but the nurse told me to stroke my throat.

The idea was to have an aim each week and to try to accomplish this was not easy. They gave me a very large clothes peg which I had to squeeze with my left hand until I got it onto the edge of a paper, then came the smaller clothes pegs and then hair clips. In between doing this I had to turn the pages of a newspaper, this was very tedious and difficult but I managed it in the weeks allotted me.

The left arm would not stay down. When trying to walk up it came to my chest with the fist clenched. So that was another aim, to straighten the arm, and also the left knee was obstinate and was always bent, the exercise for these was to put one foot on a high stool and my hand flat on the table and keep bending and really straighten the knee. This was very difficult to do but the aim was accomplished.

Getting out of bed was another aim. They used to lay me flat on the bed, I had to turn over completely sideways, bend up the knees and get up on the bended elbow then swing the legs round. It is surprising how easy it becomes.

After a few weeks the nurses started coming every other day until it got to twice a week, by this time I was walking with help down the garden path and back.

All these weeks an extremely helpful home help had been coming once a week when the house was hoovered but she didn’t have enough time to dust so I thought it would be good therapy to do a little dusting myself and was surprised how much my hand had improved. I could now pick up the light ornaments and also do a little personal hand laundry. My daughter and daughter-in-law had attended to all the laundry, and changing the bed-linen I could never have managed without their help as I have no washing machine. They made a point of coming to see me two or three times a week each. My granddaughter had finished the planting in the garden and it began to look very colourful.

My left leg began to swell rather badly and the doctor prescribed support stockings and tablets. Gradually the swelling went down and it made walking easier. Eating was a problem as I couldn’t cut up the food and had to have some help and had to push the food around with a fork and my right hand.

One day the nurse suggested she should take me in her car to the bus terminus at the White Horse in Rottingdean and ask the driver if I could practise getting on and off the stationary bus to give me confidence. I did this three times, sitting in the bus each time, and the driver was most co-operative. From then on we hired a taxi to take us into the village once a week and went into the Queen Victoria for a drink and came back on the bus. It was so lovely to get out and meet some of my friends again after all these months. Of course my close friends had been visiting quite often once the nurse allowed it.

One or two falls occurred while trying to make progress. Once I went flat on my face in the kitchen tripping over the metal strip in the outer door, and then I tried to reach a wall cupboard by standing on a stool, overbalanced flat on my back and cracked the back of my head. The third time I fell in the Queen Victoria loo, banging my head on the floor quarry tiles, getting up with one hand on the paper holder and the other on the door handle. Of course there was no strength in the left hand and I was very frightened. I swear I will never again lock a loo door as it was a painful effort to get up and no-one could get in. I think I damaged a rib as it took weeks to get better and also undermined my confidence, but this soon came back after a few weeks.

I am hoping this description will give everyone who has suffered a stroke the will to persevere until they get back the full use of their limbs.

Dot. One day I was supposed to go up the ear hospital and transport didn’t come and I thought “Oh God, I desperately want to go up there and see if they can do anything” . And as I walked along I was saying to myself, “Come on, you can do it, there’s no reason why you can’t, you can do it in the flats, there’s no reason why you can’t do it here!” I had to ask someone to see me across the road because it was quite busy. But they were very good. They took my arm and saw me across.

Margaret. I can walk indoors and in the garden without a stick, but when I get out in the wide world, I’m flummoxed.

Dot. The physio would never let me have a stick. Every time I suggested it, “No way” . And really I suppose there’s no reason why because I haven’t broken anything, have I? There’s nothing wrong with the limbs, it’ s just a question of getting your muscles strong and working again.

Margaret. I didn’t have a stick after the big stroke. I got my leg back to working order and I was walking around the block, quite all right, until I had the third stroke and that took me all down the right side. Everything came back again quickly, but it left my head dizzy, you see. I’m sort of giddy all the time, that’s why I need a stick, not to support my limbs. I don’ t feel secure.

Dot. What do they say about that, then?

Margaret. They haven’t said anything. I’m so afraid of falling over when I’ m out. If anybody was to knock me, on the pavement or anything like that, down I’d go.

Dot. I used to dread little children when they’re prancing in the way.

Marion. In the beginning I used to notice that quite a bit, because I had a stick.

Margaret. They come through with the push chairs, don’t they?

George. I don’t give way. Just carry on and they have to move.

Marion. I had my stick for a couple of weeks. But when the occupational therapist came she said, “You can do without it,” because I was finding I was relying on it more and more.

Dot. And you hunch, you bend your body.

Marion. But when I first went out, I was afraid of being knocked over unless I was holding somebody’s arm. I probably wouldn’t have been, but you just feel spindly when you’re…

Margaret …Amongst a crowd of people, they just jostle you, don’t they, especially somewhere really busy. If you’re not moving, people will just brush straight past you.

Marion. That’s right, because you can’t move aside as quick as they are moving towards you.

Margaret. And you see down our High Street in Rottingdean we’ve got a brick pavement, and it’s all uneven. I’ve only got to catch my toe, and as it says on a leaflet I’ve got, your toe’s the last thing you pick up, with your bad foot, so of course if you think you’ve picked your foot up and you haven’t, you catch your toe in the brick and down you go.

Dot. They’re dreadfully badly maintained aren’t they, pavements, they’re awful.

LEARNING TO LIVE AGAIN

Nick. I was interested in what you said, George, about your daughter being a Community Nurse because she obviously got you a lot of aids which you might not have got otherwise, is that right?

George. Yes. Well it’s not what you know, it’s who you know that counts isn’t it? (Agreement). And she was able to point us in the right direction for various things.

Nick. Was it a bath hoist you got?

George. No, it was a seat for the bath if you couldn’t sit right or get up from the bath. It had two-tier seats, you get on the top seat, swing your legs round, get in the bath that way, then from the top seat down to the lower seat, which was below water level, below high tide.

Margaret. I’ve got one but it’s only got one seat and I can’t use it. It’s getting in you see, I can’t get in and stand on one leg.

George: Well mine’s got a collapsible seat that’ll go down lower. It’s useful for getting your legs over. You need to get on to the resource officer.

Nick. So Margaret’s got a bath aid which doesn’t aid her. Has anyone else had an experience like that?

George. They put handles at the side of the bath, they’re useless.

Kay. They are useless George, yes a friend of mine had that. They must be designed by men with arms about ten foot long (laughter).

Dot. I was very lucky, they gave me everything I wanted, handrails, bath-seat, toilet surround, and so on, but we went to see someone else who’d been in hospital with me, she hadn’t been given anything, and she was on her own, she was in greater need than me, you just wonder why? It’s a lucky dip, either you’re lucky or you’re not.

Irene. It depends on whether you can ask for things.

*
George. You didn’t think of dialling 999 when you had your stroke?

Margaret. No, no it never dawned on me. I didn’t think of dialling anybody, and then suddenly my daughter’s telephone number flashed across me, and how I found the digits I don’t know. I’ve got a handphone now, which I carry around with me. My son got me one straight away.

Dot. I’ve got a phone in every room now (laughs), just in case.

Margaret. Yes, well I can take mine with me, I can even take it in the garden.

George. I’ve got one of those phones, you pull the aerial out and press the little thing. The only thing I find is there’s a lot of interference with ours. It has to be more than six feet away from the television set or any electrical apparatus.

Margaret. Does it really? Oh mine doesn’t.

George. There’s a console isn’t there, that you have to put it on at night, to recharge the batteries.

Margaret. Yes. I’ve got that by the side of my bed, so I’ve got a phone by the side of my bed as well. Recharges every night.

*
Margaret. As I told you, I fell flat on my face in the garden and I was lying there laughing my head off because I couldn’t getup. I thought “I hope nobody’s looking.” And there was nothing at all to get hold of.

Nick. Does anybody know how you can get up when there’s nothing to get hold of?

George. The first thing they taught me was to lay on the floor and then get up.

Dot. Go up on one knee and then sort of lift yourself up. It’s not easy but it can be done. You really want to do it with someone there if possible, don’t you? My physiotherapist taught me how to do it in hospital which was marvellous because I had her there with the back-up.

Margaret. Well I had some very good nurses and they came in every day but they didn’t teach me how to get up if I fell. That’s one thing they didn’t teach me. They taught me how to turn over in bed because you see this side’s useless. They told me to get upon one elbow and then you can get yourself over.

Dot. I thought they told you to roll over more.

Margaret. Well they told me to roll partly over and then stick my elbow in the bed.

Dot. I remember my poor mum, she was crippled, and if she fell over it would be, oh forever, you know, hours. I’d go in there and her hands and her knees would be bleeding because she didn’t know how to do it, she panicked, but you can’t do anything then. It’s not a bad idea to try to walk on your knees, which again is what my physiotherapist told me, because if you can walk on your knees you can go that bit further to a heavy bit of furniture where you can hold on. It’s not easy walking on your knees because the bad leg sort of drags and you wonder what’ s holding you back (laughs).

George. Yes, you wear that knee out, don’ t you.

*
Irene. It wasn’t until nearly a year afterwards, when I had moved and my sister-in-law said “Can you drive now?” that I went to the doctor to see if I could and he arranged an eye-test. The result was I lost my licence. My field of vision was impaired. The doctor knew there was something wrong with my eyes but no-one told me I shouldn’ t drive before that.

At the same time I wasn’t hearing well, so I had a test. They told me I couldn’t have a hearing aid but didn’t tell me why. I thought I would gradually get better with time but after four years sometimes I feel I have gone backwards. Perhaps the urge to get on with life again was the spur. But the effort to get through each day seems very hard sometimes.

*
Margaret. I had a bad turn, this week. I was just going to pick up the kettle of hot water, to make some coffee, in the kitchen, and my legs went like jelly and my head twisted round and round, and I thought “Get on the floor.” I got down on the floor, and I went all peculiar, you know. I don’t know what happened. Anyway I came round. My friend George was in the garden, so I crawled to the back door, and called to him “George, come quick,” and he came in and he lifted me on to the settee. So we thought we’d better have the doctor. And all he said was, “It’s probably your low blood pressure, which I can’t do anything about. It’s the tablets you’re taking, if you don’t take those tablets you’ll probably have a coronary.” So I haven’t got much choice, have I?

Marion. I suffered something very similar about three weeks to a month after I’ d had the stroke, Margaret. I was at home in the evening on my own, and I was just going to do something in the kitchen. And I could not only feel but I could hear my heart pounding, suddenly, and also I started to have that same sort of funny sensation, just like I’ d had with the stroke, but nowhere near as severe. And I sat myself down on the settee and I couldn’t think of phone numbers. Anyway I remembered my friend’s phone number, and he came straight away, and the doctor came, it wasn’t my doctor, she said “Well, you do have these sort of things, they come and they go, you do have sort of setbacks.” But I remember I kept going “One two three testing,” because I was afraid 1 wasn’t going to be able to speak (laughing). It just passed off but I felt really quite wretched. But it was the same sensation, you know.

*

My wonderful hand,
that now I can lay flat on the table
and write this piece with my nimble fingers,
just three years ago my hand was lying limply on the end of my arm.
The physios told me “You’ve got to go through the pain.”
But with tears running down my cheeks I said “I can’t, I can’t”.
But then I wanted to go home to be with my cats,
who had to be fed from opened tins.
So I had the incentive and persevered with exercises and swimming,
stretching my hand out in front,
and like a frog pushed myself through the water,
and finally reaching out to the Steps to Success,
with my Wonderful Hand.

Irene, May 1990

COPING ON YOUR OWN

Nick. Books often refer to the carers as “the husband” or “the wife.” That book Stroke is full of pictures of a man being looked after by his wife.

Irene. And when you haven’t got one you feel “What about me?”

Margaret. But you can let off steam on your own, can’t you? Irene Yes, and I cuddle my cats.

Kay. It’s just certain times… I suffer from flu a lot and you’re laying there, and you think “Oh if only somebody could bring me in a cup of tea,” and you’ve got to get up and put a dressing gown on and it’s an effort. But you do it, you’ve got to do it, you’ve got no option. You lay there and die, or you get up and get on with life.

Margaret. You know you’ve got to, so you do it.

Irene. I sometimes feel if I had someone there I’ d be too irritable with them. You know, I’ve felt better off on my own.

David. An article by Valery Eaton Griffith said that they have a very good rehabilitation rate for people living on their own. Because they don’t lean on the others, they don’ t feel “Now I’m a victim and people have got to look after me” , they’ve got to exert themselves from within.

VENTURING OUT

Margaret. Outside the house I find there are too many steps, and doors are difficult, also there are not enough hooks in public loos.

Dot. Yes. When you’re fit and able to do everything for yourself you rarely think that there may come a time when you will no longer be able to. You accept that as you get older you may slow down, but a stroke can turn even young, fit people into the category of disabled – at a stroke! You realise then that, although we’ve had the Year of the Disabled and lots of publicity about making things easier for the Disadvantaged, as the Americans call us, very little has actually been done.

Your carer tries to push your wheelchair across the road. He will go down a sloping part of the pavement and then have to walk in the road for several yards before finding a similar slope on the other side.

You go to a restaurant which caters for the disabled, but there is no ramp. You have the embarrassment of waiting for people to lift you up.

You stop at a motorway service station which boasts an invalid toilet, but you find three steps leading up to it and a door that opens towards you. Very few public buildings (eg banks, post offices, town halls) have easy access for wheelchairs, yet these people are very much part of the community. Some supermarkets have wide aisles, but a person in a wheelchair can rarely see, let alone reach, the goods on display.

How do the disabled buy clothes? Changing rooms are difficult enough for the able-bodied to use. All we are left with is postal shopping. What happens when the clothes don’t fit? We have to find a kind person to take it back to the post office, and wait for a refund. Most unsatisfactory.

I am recovering from a stroke and look quite well but I am still unsteady on my feet. I wonder if for people like me there could be an orange disc, like the car sticker, that we could wear on our coat when we go outside, to warn people that we are not as we seem. I suspect some people would be too proud to wear it, but if it saved me being bumped into, or glared at for bumping into people, I would be happy to wear it.

Kay. I often wonder how much thought has been given by architects and planners, when designing buildings, to one vital structure – doors. Must we always have these huge glass monsters which often in my observation able-bodied people have problems opening, let alone the more feeble among us? I know I am in a minority but still the problem has to be overcome, as I encounter this situation somewhere or the other every week. It’s a joy when you do find a shop where the door opens automatically.

Sometimes I travel by train, so I find once again there are doors to open, not only the actual train doors but doors to people’s good nature and help. This has been met on every occasion by kindness and concern for my well being by people right across the generations. “Seek and you will find.” I did seek and found, and am still finding, compassion and a caring attitude within people in this often turbulent and stressful world. I’ve had some really quite funny experiences on the train. I wait until I get into Victoria Station and I look around the carriage and think “Who’s a likely one to help me?” And I nearly always pick the young people, and I say “Excuse me, could you help me please, I’ve got rather a nasty back?” Only to the barrier because my daughter-in-law’s usually waiting there, and it’s absolutely been fantastic. Fantastic. They say “Come on.” Once I came down and I asked a man, he was opposite me, he was a body-builder, I knew this because he was reading a magazine. “Right!” With one hand he got my two bags and took me right to the taxi rank.

Nick. People want to help.

Margaret. You can’t be independent.

George. You mustn’t be afraid to ask for help if you need it.

Kay. No. All the inhibitions I used to have, you know, the independence streak in you, “You’ll do it or else,” that’s all gone by the board now.

George. One of the things that has impressed me since my stroke has been the kindness I have received from my fellow human beings.

BUREAUCRACY

Marion: For months I had no help from the DSS whatsoever. They sent me notification that they would be paying me and that I would get a cheque and they’ d send a book, but they didn’ t do anything. I was going to be repossessed if I didn’t watch out, and I didn’t want that to happen.

But I let all these people know at the beginning, I sent recorded letters, and I did actually telephone the ombudsman, and spoke to somebody, and I was something like three months into arrears then, and she said “Well, it is quite serious, but we can only come into play if they actually threaten to repossess your house.” And she said “State what has happened, will they freeze your mortgage, will they extend it?” And that’s exactly what I did, but I had no reply, no response at all.

David. Well that’s quite serious isn’t it? I mean have you been to the Citizens Advice Bureau?

Marion. Well, first of all I went to the Brighton Rights, and they were the people that first filled in this huge form when I couldn’t. It wasn’t so much I couldn’t write, but 1 couldn’t really do forms in the beginning. And they filled it in and they said they’d sent it off. And I never heard anything for a month.

So a friend took me down there one day about nine o’ clock, and it’s awful, that DSS office in Edward Street. I was really afraid, it’s not a nice environment at all. And when it was my turn I said had the clerk received this form? And he said no he hadn’t, so I had to fill in a whole new form and one thing and another, and go through it all again, and I gave him copies of my wages slips.

And I thought they were doing something, and still time went by, and then Barbara Deacon at the Brighthelm Centre wrote on my behalf, but I had to authorise what she wrote, and she said “It’s quicker if they write back to you.” But I still didn’t hear anything. Then after two weeks some people came down from my head office and the financial lady took all the papers and said she was going to write to my bank. So I left it to them.

BACK TO WORK

George. After my first stroke I was able to take on a Saturday job at a local DIY shop and thoroughly enjoyed the experience as I was using again the tools and knowledge I gained as a youth when I worked at an ironmongers shop in Margate.

Marion. Four months after the stroke I told myself I was well enough to return to work, albeit on a part-time basis. My job was at the Brighton Fire Station and the doctor at County Hall said to me “Have you considered giving up work altogether?” I said, “Well no, hardly, I’m not that old to be put out to pasture?, and I told him I wanted to come back to work. My own doctor didn’t really want me to, but I kept insisting. I went in every other day, doing approximately three to four hours. But it was the six flights of stairs which seemed to take a lot of my energy, before I started.

Kay. Did you have a lift there?

Marion. No, I sort of pulled myself up. I sometimes stayed on the landing. That’s the shame. They were thinking about relocating me, but of course the only other fire station would have been at Lewes and I’d have had to go all the way out there. But at least I could have driven and it would have been on the level, and only for a few hours. But I don’t know if it was worth putting up with just going up the stairs and doing the little I did. If they’d have borne with me, you know, but I think they thought I should be over it straight away. And I carried on working for that month, and I was making myself a complete wreck and my doctor just signed me off. And I didn’t really want that to happen. Most of my colleagues did understand, but some of the people I was working with, they’d got no comprehension, really.

Kay. Because you look all right you see. You’ve nothing to show for it. You’re on your feet, people think you’re all right.

Marion. My main concern was a financial one – hence the rush back to work. But I must count my blessings when I think of all the time and energy some members of staff put in to assist me. I had this meeting with three people from HQ. Obviously with hindsight we all saw where we had gone wrong, ie one time overpayment (only to be clawed back), my rushing back too soon, so over tea and coffee we sat and discussed what would be best for me in the long term, no dates, no set limits, but with a definite view to relocation. That got me thinking positive and with a view to eventually returning to my former self, however long it might take.

Note. At the time of going to print, Marion has still not been able to return to work.

Aline Harris (special contribution). After my stroke I went to speech therapy three times a week followed by physiotherapy which concentrated on my right hand. My husband took time off to look after me and we had many, many sessions of his version of speech therapy, general knowledge, holding a pen, writing and attempted dexterity, with friends maintaining the stimulation when he was unable to. All through this difficult time I had one overwhelming objective which was to return to my previous job with the library.

After a year of desperately hard work and concentration it was time to take stock. I was much, much better and had regained a quality of life and living which had previously seemed out of reach. A psychologist tested me thoroughly and found that my speech was about 80%, my right hand capability 70%, writing 30% etc. But my ability to deal with several tasks simultaneously as was necessary in a branch library was no longer there. The expert wrote to my personnel officer, emphasising my good points like motivation, conscientiousness and previous good record and after twelve months of sick leave I was reinstated to a job “behind the scenes”. Not as interesting as dealing with the public, but not just sitting at home feeling sorry for myself either. The daily exchanges with my colleagues, the general chat and the demands of learning new skills all continue to help me.

AM I STILL ME?

Al. Something my dad has lost is reading, he used to read loads, he used to read the newspaper every day from cover to cover, he used to read lots of novels and things, and he just lost all enthusiasm for that.

Margaret. So did I, and I haven’t got it back yet. I’ll read about two pages of the newspaper and put it down.

Marion. It’s the concentration.

George. I’ll tell you what I find the most frustrating, I used to do a lot of DIY work about the house, putting up shelves, building brick walls and things like that, and I can’t do that now, you see. I think it’s a lot to do with failing eyesight as well. And I’m a little bit deaf.

Al. Do you ever find that you want to do things and overshoot the mark, push yourself too hard?

George. Yes, yes. I find I want to go there before I’ve been here…

Al. Like my dad. It’s the frustration, and it’ s frustrating for everyone else too, because they’re all saying “Take it easy, slow down.” Then of course he’s getting all angry.

Dot
My stroke cut me off from
My independence
My New Year trip to Norfolk
Two booked holidays, one to Malta and another to the South of
France
My GCSE classes
My dancing club
My shopping trips around Brighton
My walks on the seafront
My visits to friends
My evening strolls.

Margaret. The nurses helped with exercises and therapy and taught me how to do things in a different way. They taught me that I was a different person. I have learned to accept that which I cannot change.

I am more compassionate now and realise what disability means and try not to be demanding and so have to be patient. I have learned how to walk again and do small jobs around the house.

Before my life was so traumatically interrupted I was a completely different person, a perfectionist of the worst kind. My home had to be cleaned regularly and everything in its place, the rooms were kept decorated and everything was spotless. Now I have to sit and look at it all needing attention and I am powerless to do it, having to rely on others to do most things.

I was a member of most associations in Rottingdean, also the British Association of the Hard of Hearing and the Women’s Writing Group in Brighton. I went on many day outings, weekends away, also holidays abroad with my friends.

My garden was a pleasure to me and I enjoyed working in it so much, now the hedges have gone and fences take their place, also urns of flowers have had to take the place of most flower borders as I can attend to these myself.

But I think you can annoy other people, by being such a perfectionist. I knew I wanted everything perfect, and if I couldn’t get it perfect I got annoyed with myself. You invariably do it your own way. Other people do things, and they don’t do it how you want them to. Well I know I’ll never get back to how I was before because the doctor’s told me.

Marion. You have to set lower standards, you’ll have to forget your perfection. When it comes to me, I’m not the same person. Before 28 November 1990 I was a lively, happy-go-lucky person, hardworking, in a demanding job, in a happy relationship, despite “outside” influences. I used to laugh at the drop of a hat. I find it very difficult to get my sense of humour back (general agreement). And you know it took away a lot of my self-confidence. I think it was because I couldn’t remember some things, and yet felt really capable of doing all sorts of things. But I was really fooling myself.

Margaret. You think you’re capable, but when you come to it you’re not, are you?

Marion. That’s right. But going back to the time I was in hospital, I tried hard to “recover” as quickly as I could – but from nowhere came hundreds and hundreds of anxieties from over a period of forty years or more. I do not know why they came into my mind, almost all of them have been resolved – but I cannot lay them to rest. Ironically, things I would normally have been worried about before the stroke, money worries, meeting the mortgage etc, I haven’t really been bothered about at all!

Irene. All past hurts came to the fore, but for me it might have been coming home to Brighton and seeing relations as much as the stroke. I cried one day when the nurses came round with a raffle and I hadn’t any money. I felt so ashamed as the staff were so good to me. How could I be left like this!

But
I’m glad I had a stroke.
It gave an exclamation mark to fifty years
of healthy living,
Reminded me I’m mortal with a purpose to fulfil before I die.

Youth was an ordeal
So God has given me a second chance
to put into effect what I should have heeded earlier.
I tried to be a good little girl, keeping out of trouble,
Making others contented.

Now is the time for me to be happy,
Successfully living life in my own way,
For the best is yet to be.

I’m glad I had a stroke.

Irene

TAKING STOCK

Margaret Spring 1992. Since having three strokes my family have been most helpful, but what is most hurtful is the fact that I can’t be useful any more. I have always been called on to babysit but that is impossible now and it used to be so enjoyable.

I made an improvement for one year but not since. My life has completely changed. I can only walk a short distance.

I feel very depressed every morning as I know it is going to be just like yesterday. I feel very disabled at times and wish I could be my old self. When my memory fails I feel very stupid and sometimes despair.

Dot 15 May 1991. It seems hard to believe that three months ago I was lying in a hospital bed. I’ve made so much progress.

After I learned to walk again I was discharged from hospital. Fifteen months before my stroke we had moved from a warden-controlled flat on the first floor to a flat on the sixth. The lift only went up to the fifth floor; we had to walk to the sixth. This didn’t bother us as we were fairly young and fit.

It was a different matter when I came home from hospital after my stroke. The passage-way from the lift to the stairs seemed endless, my husband had to push me in a wheelchair. There was no way I could ever see myself able to walk that far. There were heavy fire-doors to be got through, two flights of stairs, another set of fire-doors and another long passage to my flat. I couldn’t see myself ever being able to get up and down the stairs without a great deal of help. I was all right in the flat, I knew my way around and there were plenty of things to hold onto if needed, but I still found it hard to imagine myself ever walking outside.

I really hated being pushed in a wheelchair. I felt unsafe and I realised how young children must feel in their pushchairs, the pavements are so badly maintained. I think it was my dislike at being in a wheelchair as much as anything else that made me determined to walk everywhere again. I’ve already said how fortunate I was to have a husband who was so helpful. We would drive along to Hove sea-front in the evenings and I would walk along the promenade holding his arm, going a little bit further every time, making sure not to overtire myself.

I wasn’t just working on improving my walking. Every day I would set myself a new task. I am now able to cook, wash up, make the bed, do the ironing and cleaning.

Just as I am fortunate in my husband, I am also fortunate in my friends. After my husband went back to work, a friend from the flat below called in every morning to see if I was all right, my next-door neighbour called whenever she went to the shops and other friends came in every afternoon. Some would come for a chat, another to play chess, another to play cribbage. At first they made themselves a cup of tea but as the days went by I was able to make a cup of tea for them. Each thing I did was an achievement, simple things that I had been doing for fifty or sixty years became great triumphs when I was able once more to do them.

I think my biggest triumph was when I got downstairs on my own. However, I still hadn’t walked outside by myself except for a few steps to the car. I was determined to conquer this final peak. One bright morning I got together my courage and my confidence and set out. I decided to walk round the outside of my block of flats. I was nervous at first because my eyesight is so poor, but gradually I began to feel better and by the time I had completed the circuit I was very happy. As soon as I got back into the flat I phoned my husband to tell him. A few days after that historic occasion I set out again. This time I walked to the park nearby and sat on the seat in the sunshine. I was actually doing what I had never dreamed would be possible.

I still have bridges to cross. My poor eyesight makes me nervous of venturing across roads. I haven’t yet been on a bus or a train, but I feel now that given time all things are possible.

Saturday 28 December 1991. The anniversary of my stroke has now passed. I must admit that I viewed its coming with some trepidation. I didn’t dare go out that Friday in case the same thing happened again. I know it was stupid to think like that but I couldn’t help it.

One year on I am practically back to where I was. I do all the household chores and cooking, although I still leave John to do most of the shopping. I go out on my own most days just to the local shops. I wander around and buy the odd item, nothing too heavy though. I can get on and off the buses fairly easily. I realise there are a lot of people more shaky on their feet than I am.

I am still not too happy crossing the road but my confidence is growing. I go dancing, swimming and do keep fit regularly. I can also sit on the floor and play with my grandchildren.

My naughty little hand has improved greatly. It does everything I ask of it and I never cease asking. I can hold a fork and cut up my own food. I can even get it to put food in my mouth, although often my forefinger pokes up my nose. During Christmas I picked up a glass of sherry and drank it using my left hand. I can carry cups and plates etc but I still have to watch it all the time. Any lapse in my concentration and down they go. A great breakthrough last week, I was able to blow my nose down my left nostril, something I haven’t been able to do since my stroke. I still have no feeling in my left side and eyesight and hearing are poor, but I am learning to compensate.

1991 turned out to be a good year for me. I went to Normandy on the ferry twice and to Paris by air. We had three weeks holiday in the Canadian Rockies where I went up mountains, albeit by ski lift, flew in a helicopter and float plane and walked in the woods. I’m now looking forward to a six-week trip to Australia and New Zealand in February. I’m keeping my fingers and everything else crossed.

After a stroke some people ask how it has affected you. Has it made you appreciate life more, what benefits are there in it for you?

Sometimes my answer is “Yes, of course you appreciate waking up in the morning and people next to you who have helped you recover but, for myself, I was never unappreciative of life or the good things I had. I don’t believe I’m a better person for having had a stroke. I would rather have gone along in my own way without the agony of body and mind that it brought,” selfish as this may seem.

But I also feel that, although I appreciated my life before my stroke, I do so much more now. My family and friends have proved to be pure gold. If the stroke has had any effect on my feelings, it has humbled me. Because of it and the care I received in hospital, one of my daughters is going into nursing. The other one, who lives too far away to be of much help to me, has joined her village car pool to take people for hospital appointments and physiotherapy. She also sits with people to give their carers a break. My stroke has brought me closer to my step-children, some of whom visited me every evening whilst I was in hospital.

I am so grateful that it wasn’t a fatal stroke. I feel I’ve got so much to live for. In April 1991 I was able to see my first grandson born to my son’s wife. I have seven granddaughters aged from five to eighteen. I would love to see some of them marry, Please God.

I was saying to a stroke nurse when she came to visit, the one thing that scares me is the thought of having another stroke. She said “Oh don’t worry, I know ever so many people who have only ever had one stroke,” and I said “Well everybody I met has had three or four.” But she said she was just as likely to have a stroke as I was to have another one.

George. It is now eight years since my last stroke and I think of it less and less. The important thing is to get on with life in the circumstances in which one finds oneself and forget about “what might have been.” My wife and I now live in Brighton because advancing years meant that maintaining the house and garden where we lived in Surrey for fifty-two years was becoming a burden and we felt it was time for us to have time to relax and find some peaceful enjoyment from life!

Our daughter Deanna, our only child, was living in Rottingdean so we thought it would be nice if we could live near her in case either of us should fall ill (or worse). Deanna is now a District Nurse having spent time as Staff Nurse at the Royal Sussex Hospital and, before that, at the Royal Marsden cancer hospital in Sutton, Surrey. So she is able to, and does, look after our health needs, and has been instrumental in getting a lot of aids for me personally such as introductions to Day Centres, accessories for the bath, etc.

In addition to all these things she frequently helps by doing the shopping for us and takes us out every now and again for a pub meal to places like the Plough and Harrow at Littlington and the Hole in the Wall at Seaford.

Irene, 21 June 1991 (four years on) Fine – that’s what I say when anyone asks me.

Half the time that is true, when I feel energetic and able to get on with jobs, and go out. Other days I have to have a nap in the afternoon or often in the evenings, waking up late at night to see to the cats. I get cold and hot without feeling equitable, having to put heating on or a cardigan off.

But really “Fine” as long as I keep active and don’t develop into a couch potato. The stroke has made me look into myself and see what I want. I was so grateful originally and I thought I would be looked after, hut now I am trying to be more independent and in an appropriate way, think about what I want out of life.

June 1992. Now I can do anything that I feel I have to do. This year I wanted to mow my own lawn, after paying someone to do it for me for the past four years, and having had builders in for most of that time. So with the occasional outburst of frustrated tears I assembled the small mower and fitted the plug and a passing neighbour started the motor for the first time and I was able to mow the small front lawns. “Another thing learned, well done,” I said to myself.

So physically I’ve done very well, but emotionally I have my ups and downs. There is no-one to say “Well done!” when I’ve coped with having half the house refurbished. I have always been a “joiner”, wanting to save the world, but some of the joy has gone out of that when I’m tired and feeling less confident, my speech is hesitant and my mind isn’t so quick as it once was. This year I shall be fifty-six, so I could put it down to age when everything takes me so long and is so tiring.

I have helped to produce some QueenSpark Books and sent half a dozen as Christmas presents, but even then I didn’t get a “Well done!” No reply at all except one comment on a poem of mine, but the book it was in was returned with my Christmas calendar!

I don’t know if that says more about my friends and relations, or about my literary pretensions, or about my naive thinking that people’s kindness would overcome their giving me a little white lie to say they’d enjoyed my production and “Well done.”

So five years on I’ve got to look forward on my own, toughen up and squeeze out the soft sponge that was my loving heart and catch onto the golden thread to lead me painfully on to my heart’s desire, whatever that may be.

TRIBUTES

After my stroke I couldn’t have managed without
my husband who, with his loving kindness,
gave me the incentive to return to a full life;
my children who, although living many miles away,
travelled to see me often in hospital,
showing me they wanted me to recover;
my friends who, by their steadfast care and frequent visits,
showed me that I still had a place in their lives;
and last but by no means least,
Pippa my physiotherapist.
Dot

George. I owe everything to my dear wife for helping me overcome my disabilities. She has encouraged me and nursed me through the bad times always and given me sympathy and understanding at all times.

I doubt that we will ever see
A helper lovelier than she.
A willing aide who’s always there
Dispensing cheer and loving care,
Who always looks to see if she
Can lend a helping hand to me,
And with it all a lovely smile
Which seems to make our life worthwhile.
I’m sure that she will never know
How sad we were to see her go.
Now I have got that off my chest
I’d like to wish her “All the Best”.

(Written for Barbara, helper at the Day Centre)
George

Readers please write!

If there is anything you would like to say about this book, especially if you have had a stroke yourself, please write to Nick Osmond, Stroke Writing Project, QueenSpark Books, Brighton Media Centre, 11 Jew Street, Brighton BN1 1UT.

All contributions from stroke survivors about their experience will be very welcome, and will be added to our file for possible use in a later edition of this book. Get someone to write for you if you are unable to do it yourself, but please keep it short!

Stroke: Who cares?

This is the title of another book in the QueenSpark Market Books Merits. Written by people with experience of caring for a close relative who has had a stroke, and published in 1993, it is a companion piece to this one. Have you seen it?

INFORMATION

This information is based on the Brighton Health Area. We have done our best to check it against information available at the date we go to print, 15 March 1993, but we cannot guarantee that all items are correct and we apologise for any errors.

A number of services are available through Social Services. Find your Local Office under your County Council in the phone book.

For further information

Book: Dr R Hewer & Dr D Wade: Stroke, a practical guide towards recovery, Optima Positive Health Guide, 1986.

Help in hand. Community Information Directory, available in public libraries or from ESCC Library Service, 44 St Annes Crescent, Lewes BN7 1SQ.
See also Making links, Brighton & Hove Federation for the Disabled Directory, & Getting on in Brighton, Age Concern Directory: ask in public library. Your public library can also provide information and many special services including “talking books”.

Lists of GPs, dentists (home visits can be arranged), opticians & community physicians from Family Health Service, Lewes, tel. 476262

Speech and Language Therapy Speech & Language Therapist, Briggs Day Centre, Brighton General Hospital, Elm Grove, Brighton BN2 3EW, tel. 696011. Help with speech problems at home: Barbara Wood. Volunteer Stroke Service, tel. 302968

Nursing help & advice on coming home from hospital Stroke Rehabilitation Nursing Team, Community Nursing Services, 26 Ditchling Road, Brighton, tel. 693600 ext. 3759 (leave messages); ask for their leaflet In one stroke. Community nurses: through GP or Brighton 693600, Hove 728281. District Continence Advisor: 693600, ext. 3398.

Help with housework, shopping etc Home Help Organiser, through Social Services.

Help with mobility at home, handrails, special equipment, adapting home etc Occupational Therapists, through Social Services. “Staying put” scheme: Local Council & Anchor Housing Trust, tel. 821648. Equipment loan: British Red Cross Association, Brighton & Hove, 325118; Lewes, 473834; Rottingdean, 304424. Return of equipment loaned by Health Authority, tel. 728281. Checking & adapting gas appliances: write to British Gas, 27 St Leonards Rd, Eastbourne BN21 3NN, tel. 0345 045551, to register as Gas Care Customer.

Support for the disabled. Advice, campaigning & counselling, access guides: Brighton & Hove Federation of the Disabled, tel. 203016. Brochure, information officer and full-time OT: East Sussex Association for the Disabled, 47 Western Road, Lewes, tel, 472860. Disablement Services Centre (ALAC), Elm Grove, Brighton, tel. 674391. Appliances: Social Services: Lewes: 474236; Newhaven: 513574. Funding for equipment; Disabled Living Foundation: 071 289 6111.

Cars, Driving, Getting about For assessment, tests, courses, special cars and appliances, etc: Banstead Mobility Centre, Damson Way, Orchard Hill, Queen Mary’s Avenue, Carshalton, Surrey SM5 4NR, tel. 081 770 1151 (leaflet available). Community transport: 73100 or Disabled Drivers Association: Church Lodge, London Road, Balcombe, West Sussex RH16 6PX. Orange “disabled” badges (3 hrs parking on yellow lines) through GP or Social Services.

Stroke Clubs & Day Centres
Resource and Day Centres, through Social Services.

Hopalong club meets last Thursday of month at Phoenix Day Centre, 26 Mailing Street, Lewes, tel. 474236; drop-in info also available.

Stroke Clubs Co-ordinator, Jo Harvey-Jones, Brighton General Hospital, Elm Grove, Brighton BN2 3EW, tel. 696011, ext. 3622. Rokets Club (under sixties) organises outings. Other clubs meet at Whitehawk (Mondays 2-4), Patcham (Thursdays 2-4), Peacehaven (Tuesdays 9.50-12), Hove (Fridays 2-4). Speech Groups meet at Tower House, London Road, Brighton, Fridays 10-12 (Barbara Wood, tel. 302968) and Peacehaven, Tuesdays 2-4. Social Services run a club at Montague House, Somerset Street, Brighton, tel. 687990. Red Cross Stroke Club meets at Rottingdean Fridays 12-3: Sue Croucher, tel. 585295.

Support & information for Carers East Sussex Care for the Carers (support groups, information & monthly magazine): main office 143 High St, Lewes: tel. 476819; if you live in Brighton, Hove, Lewes or Newhaven, tel. 492291. Carer Forums: Jenny Martin, 7 Chyngton Way, Seaford BN25 4JA, tel. 0323 492291. Carers Centre (drop-in centre), 1st Floor, 210 Church Road, Hove BN3 2DJ, tel. 207879. Crossroads (sitting service), Brighton 571400, Hove/Portslade 420466, Lewes District 483620. Respite Care, through Social Services. List of Registered Nursing Homes through South Downs NHS Trust, tel. 693600.

Advice, support, campaigning: Leaflets, booklets, cassettes, videos, etc: Stroke Association Information Centre, 8 Saffrons Road, Eastbourne BN21 1DG, tel. 0323 646655. National stroke charity: quarterly newsletter, information: Stroke Association, CHSA House, Whitecross Street, London EC1Y 8JJ, tel. 071 490 7999. Action for Dysphasic Adults, Canterbury House, 1 Royal Street, London SE1 7LN, tel. 071 261 9572. Age Concern: County Office, 143 High Street, Lewes BN7 1XT57, tel. 476704 OR Ditchling Road, Brighton BN1 4SD, tel. 570732.

Benefits Applications to Department of Social Security (DSS) (see “Benefits Agency” in phone book). DSS Customer Services, tel. 606699. Benefits Enquiry Line, freephone 0800 882200, office hours.

Advice on benefits, money and housing: Citizens Advice Bureau: 39 Surrey Street, Brighton BN1 3PB, tel. 207551; Hove Town Hall, tel. 734811; 3 North Street, Lewes BN7 2PA tel. 473082. Welfare rights & benefits advice: 0800 882200. Local benefits enquiries: 480850, ext. 234. Brighton Rights Centre, 102a North Road, Brighton, tel. 600972. Money Advice: 692664. Housing advice: 673163; Brighton I lousing Department, tel. 710000

Home-delivered meals: Colemans Quality Foods: 422913/420677. Dial-a-lunch:, 562411. WRVS Meals on Wheels: Brighton 602499 or 680389; Hove 721821; Lewes 474236; Newhaven: 513574.

Counselling: Through your GP, or Sussex Association of Counselling, 687529 or 746830. Sexual Counselling: SPOD, tel. 071 607 8851/2. Bereavement counselling: CRUSE, tel. 695003. Free counselling in London for dysphasic people: Action for Dysphasic Adults (ADA), Communication Aids Centre, Charing Cross Hospital, Fulham Palace Rd, London W6 8RF, tel. 081 846 1234 ext. 1549.

Support for hospital in- and out-patients: Patients Advocate, Directorate of Nursing & Quality, Royal Sussex County Hospital, Brighton BN2 58E, tel. 696955.

Emergency helpline. Samaritans, tel. 772277. Emergencies (shopping when ill, advice, etc): Age Concern Crisis Line: 570121 (24 hour service).

Personal alarm service: Phone link: Care Link LifeLine: Brighton: 673105; Lewes 477777.