Do you have a story to tell?
SAFE is collecting the personal stories of stroke survivors, their family and carers from all over Europe. Your story could provide others with information and might give someone the inspiration to battle disability. We will review all the stories before publishing them online. Scroll down to see the stories that have been received so far and please feel free to share your own by sending it to firstname.lastname@example.org
Emeline, France, Family Member’s Story
This is the story of a stroke which changed my life. The words I used may sound strong but I used them on purpose because I want you to understand what it was like for me. I was 2 and my sister 5 when our father died in a car accident. I have no memory of this period but a big loss. We lived together with our Mum. 3 or 4 years later she met Philippe.
They got married then had a baby girl Justine. These are good memories and the very nice years we had together, we didn’t know it wouldn’t last long.
In August 1966, 5 years after their wedding, a new page was turned. Philippe had been suffering with violent headaches. He didn’t speak too much about it, but later we found pills under his bed and in his car. Finally, he decided to see a doctor who advised him to have a scan. When he got to the hospital he was questioned on what he had done before. It was around the 15th of August week-end which is a feast in France. So he was asked if he had had too much alcohol. Philippe said no since he was painting the house. The doctors presumed the headaches were caused by the paint vapors, so he didn’t have the scan. But the headaches got worse. Philippe called the doctor back, who was angry that Phil has been refused the scan. My mother took him to another hospital, they found nothing at first, but kept him overnight. The very next day, the doctors found out that Philippe had an angioma on the brain, and he was given light medication.
He had an appointment a month later because the angioma wouldn’t bleed before long. He came back home, he is just supposed to rest.
Unfortunately, the very next night, we were woken by my mother; she was yelling and screaming for help. Philippe had got up looking for a pill and he could not get back up the stairs. He had lost control of his legs and was just knocking his foot against the steps but nothing else. He went back to the living room and was knocking his head against the walls, the headache was so violent. Mother got up and called for the doctor immediately. During this short period Phil fell and had an epileptic fit. The ambulance arrived and we were taken to a neighbor’s house in order not to be a witness to such a horrible scene, which nevertheless remained printed deep in our minds. My elder sister was screaming and the youngest was asking “Dad, he is not going to die” and I remember trembling and nothing could stop me.
We saw Phil again 5 weeks later. He had spent 3 weeks in coma. His disabilities were very severe. His right side is completely paralyzed (he will never regain use of his arm) he doesn’t speak anymore (it’s very severe aphasia).
The first time I saw him again, he was sitting in a wheelchair tied on with a sheet so that he would not fall, his mouth was drooping and he was making funny noises which we could not understand. I was scared of him, I didn’t want to see him anymore, I was ashamed of him. I was 13 and for me the way you looked was very important at that time. Besides this you don’t want life to change, it’s too hard. He could not remember much about it, he doesn’t look like Phil anymore, and it was a nightmare I wanted to end. We could not talk about it and each of us kept our painful feelings inside. Justine is afraid of him when he looks at her and means to tell her how much he loves her. But she is only 4 and cannot understand “why us”
Philippe stayed a long time in a training center and after 6 months came home for good. It was very difficult, we had to rearrange the house, but worse, I did not want my friends to come to our house any more just because I was ashamed of him. When he comes out of the toilet we have to help him to get dressed again. Today I feel like I would react differently, we were so close and still are.
Time has gone by and Phil has learnt to live again, he walks with a cane, but can only use one hand. What you can see form the outside is just the physical disabilities, but who knows what is going on inside of him, the depression, the resentments for which we were not prepared, the unpredictable reactions). How many times have I thought what an idiot he is, he is just making our lives rotten. But I speak to myself. Phil isn’t able to work anymore and is very limited in his mobility -he cannot drive, no gardening (he only has one usable hand) and no intellectual activity. When I am fed up I can take my car and drive somewhere for a change air. He is always dependent on somebody.
And now my mother’s viewpoint: What sort of life does she have now? She works but always has to consider his and the family’s well being, and to do what the man of the house normally does (the garden the car maintenance etc…).
SO YES, STROKE CHANGES LIVES!
Willi Daniels, 50+ year old professional, Germany
50+ year old, stroke survivor
Date of stroke: December 1997
While blowing up a balloon in the night of New Year’s Eve 1997 my first stroke occurred.
I thought: “OK, something must have happened in my brain”. As I lost total ability to speak, I could not inform my family or someone else about my condition. Neither my family nor myself imagined that I was having a stroke.
The emergency service was informed, but could not assign the symptoms properly (short unconsciousness, loss of speech, disability to stand erect) as well. The doctor told us that everything would be just all right very soon.
When there was no sign of recovery after half an hour, the emergency service was called again. This time, it was recommended to go straight to the hospital. No ambulance was sent. So I was carried to an accident and emergency department of a nearby hospital by private car. The opening and admission to this department was refused in the beginning, because I was not transported in a horizontal position. It was not until heavy controversies of hospital staff and my accompanying people that I was finally admitted.
At last I laid in the emergency department and waited for the doctor to come. During the brief examination that followed I had the impression that the doctor had a preconceived idea of my status (for it was the night of New Year’s Eve). He offered me a bed to have a good’s night rest and I got an infusion to recover much faster.
I needed almost three days (without being able to speak) to explain the staff that something was wrong with my brain and that they should apply a CT.
The next day (the day my discharge was originally planned) I was informed that I had a left-hemisphere stroke and I had to stay in the hospital. I objected, shaking my head.
I am sure, if I had paid attention to stroke before and as a healthy man it would have saved myself and of course my family a lot of trouble and worries. With the knowledge about risk factors and symptoms of stroke, it is much easier for bystanders and stroke victims to inform the emergency medical service in a more detailed and qualified way, in order to get a quick and efficient therapy.
Unfortunately, despite of great efforts of some institutions and organisations, low knowledge about stroke is still prevalent in the population.
From my point of view, a better education and knowledge about stroke is very important, not just for the old, but also for the youth as well.
Manuela Messmer-Wullen: 50 year Old Professional, Austria
50 year old, Stroke Survivor
Time since stroke: 9-10 years
I had a brilliant job and enjoyed my work. I was on a foreign business trip and one morning I tried to jump out of bed and fell on the floor. I tried to stand up but fell again. I had to rock on my stomach to get to the bathroom and when I saw my face which was totally damaged on the left side, I realized something had happened with my brain. I was very angry, panicked and tried to get back to the telephone. When I got there I couldn’t read the numbers to dial. In panic I tried everything to get somebody on the line and was lucky someone answered. I managed to call for help but then lost consciousness. I was in intensive care for over six weeks and in rehabilitation for over six months without going home.
My family visited me at the weekends and in their spare time. I wouldn’t have achieved what I have if they had not been with me. It was really hard work to become the person I am today but I am not the same person as before. This is a very big problem but I am so glad that I can move, think, react and handle the telephone. After 18 months I went back to work and realized that I couldn’t. When the phone rang I couldn’t remember what the person was calling me for, his or her name, what I should do or what my job was. It was very difficult. Things have really changed because money is nothing if you can’t move, if you can’t enjoy life, if you can’t visit friends or participate in sport. “My family, partner and kids think I am fine now, fit and can do nearly everything for myself. Of course they can’t understand that my brain has changed.
Arne Hagen, 50+ year old professional, Norway
I was a Norwegian Air Force Colonel, stationed in England, and one Sunday evening, when I was going to bed, I walked around the living room, turning off the lights and suddenly I fell and couldn’t move. I dragged myself to the telephone; the ambulance arrived almost immediately and took me to hospital where they found that I had suffered a big stroke.
When I started rehabilitation, I didn’t have any balance at all, it took me two weeks to sit up, after that I learned to get from the bed to a wheelchair and after two months I was able to walk. Once my blood pressure stabilized with medication, I got into the swimming pool with assistance. I didn’t have enough balance to know if I was on my back or front. I was taught to swim again and one day I climbed up to the diving platform about 3 meters up and dived into the water. As an Air Force Colonel, it was very hard when they told me I couldn’t go back to work and, during the rehabilitation period, I got very depressed. My therapists saw that one day I was making progress and the next day I wasn’t. It was more difficult when I got back to Norway, having been an active person, taking initiatives and now I was just sitting there. That is a tremendous challenge because it is a completely new life that you move into.