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3. "An OAP at 18": 1973-1976
This chapter and the following four follow my medical history from the very first signs that something was intruding into my life until the present day.
It all begain in 1973. I was eighteen years old, and had an eighteen month old daughter, Ashleigh. I was living in Leeds at the time when I had the first sign that there was something wrong with me. Little did I know what torment lay in front of me.
The first thing I noticed was that my right foot would curl up in a tight cramp and then turn over making it extremely painful to walk on. I then had to stop and stand on one leg, no doubt people thought that I was imitating in inebriated flamingo. I sometimes stood there for up to half an hour waiting for it to recede, only to find that more often than not it would return. I started feeling very conspicuous and began doing things like looking for something in my bag or blowing my nose hoping that people would not notice me. These cramps persisted for some weeks so I decided to visit my GP. He had no idea what was causing the cramps in my foot so he gave me a course of tranquilisers which did nothing whatsoever. He then decided to refer me to a specialist.
The first one I saw was a doctor who specialises in the circulation of the blood. After a few test at the out-patients clinic, I was informed that everything was in order. Then I was seen by an orthopaedic specialist, who also found nothing wrong. Next stop was a neurologist. After numerous visits and endless hours spent walking round his table, just to make my foot go into these cramps, he told me he could find nothing wrong with me. He said that it was probably all in the mind and that if I stopped thinking about it, it might go away. Feeling quite upset at his diagnosis I decided I had had enough of doctors, and that I would not go back. However, there may have been a little something in what he said as the cramps improved slightly. It wasn't until I got notes from my consultant, to help me with this book, that I discovered that the doctor in Leeds considered Dystonia Musculorum Deformans, a hereditary disease, as a possible diagnosis but was ruled out.
Over the next year I continued to get the cramps in my right foot but not quite as often. So I just put up with them, although at times they were a nuisance. I was engaged to Peter by now, and on a few occasions when we went to a disco, I would end up standing on his feet because mine wouldn't hold me up. There were times when we were out that Peter would have to give me a piggyback because the cramps were so bad.
During the early months of 1975, the cramps in my foot became worse and were more painful. When the foot was not in cramp, I found that it would catch the ground when I walked and at times when I had been standing still it seemed like my foot had been glued to the ground because I could not move it. At the same time my writing became much smaller and it would shake whenever I tried to use it. But still I did nothing about it. The words of the neurologist at the hospital stopped me from going back. I did not want to be told again that it was all in the mind but I knew that something, somewhere was not as it should be.
In the summer of that year I moved to Edinburgh and Peter and I got married. I still had the cramps and the tremor in my hand, only now my right arm had become much stiffer and slower. So I registered with a new GP and told him what was happening to me and what the doctor in Leeds had said to me. He examined me and thought it best that I see a neurologist at the Royal Infirmary, who, he said, was the best. If anything was wrong with me then he would find out what it was.
I received my appointment to see the neurologist who began by asking a lot of questions about myself and about my family's medical history. He then took urine samples and quite a few little bottles of blood. Then he began the cxamination. He lookcd in my mouth, my cars and my cyes, I had to follow his finger with my eyes. He stuck a pin in various parts of my body, stroked my skin with a piece of cotton-wool, these two tests were done to find out if the feeling was affected. He then proceeded to test my reflexes and my joints. I was very puzzled, I had no idea what he was looking for, and the neurologist I saw in Leeds never did any of these things. The doctor said he wanted to admit me to hospital to do some more tests and some X-rays and that I would probably be in for a week or two.
By the time I received an admission date I had discovered that I was pregnant. I was given another appointment to attend the outpatient clinic. I explained that I was going to have a baby, so under the circumstances the doctor said it would be better for me to wait until the baby was born before I went into hospital as the X-rays could be dangerous to the baby. I was to let him know when the baby had been born and he would send me another admission date. When I asked him what he thought was wrong with me, he said he thought he knew what it was but did not want to say anything until he had done the tests. So I still had to wait before I found out what was wrong with me, but at least I now knew I was going to get this problem solved. One thing he did tell me, was that it was not in my mind.
I attended my GP's ante-natal clinic until the seventh month. About the third or fourth month, I was to attend the clinic at Simpson's Maternity Hospital. My GP gave me my ante-natal card to give to the doctor there. It was not put in an envelope and so, like any other mother-to-be, my nose got the better of me and I read it. That proved to be a big mistake. He had added a note at the bottom of it, "Query Multiple Sclerosis". I was devastated. I didn't know much about Multiple Sclerosis, but I did know that you ended up in a wheelchair eventually and that it can be fatal. I got in a terrible state, Peter phoned the doctor and told him that this sort of information should have been sealed in an envelope or sent straight to the hospital.
I had a normal pregnancy and I gave birth to a nine pound four ounce baby boy, Stuart, with no trouble other than blood pressure. So, having two children and knowing that I may have something serious wrong with me, probably Multiple Sclerosis, Peter and I decided not to have any more children. Because of the circumstances, Peter had a vasectomy within weeks.
About the same time as Peter had his operation, Stuart was taken ill and had a stomach operation when he was just weeks old. I noticed that the tremor in my right arm and hand became worse and that the cramps in my foot got worse, but pushed them to the back of my mind and gave all my thoughts to the baby.
Although I managed the baby very well, I always had to lay him on the floor or on the bed to dress him, as every movement with my hands brought on the tremor. The tremor would then spread to the leg, and for the baby's own safety, he was better on the floor .
I was now twenty-two and the baby was five months old when I was admitted to hospital for tests and for diagnosis. Peter was working so he looked after himself, while the two children went to stay with his parents, who lived just yards away. I had been told that I would be in for about three weeks. Little did I know that this was to be the start of many, many more 'holidays'.
I was admitted to ward twenty-eight of Edinburgh Royal Infirmary. I was a bit worried as I had never been in hospital before, other than to have my two children. The ward was big and it looked so cold with the walls painted white and the very large windows. I felt quite depressed when I saw the number of old ladies, who were either tottering about or bent over in a chair. To my relief I was given a bed in a side ward that was occupied by three other women.
As soon as I was settled the ward doctor came to ask me endless questions and to examine me. The doctor told me that tests would start the following morning. The first tests were just routine, urine samples, blood tests, chest and skull X-rays which took most of the day. Over the next few days I had cardiograms, a machine that records the heart, isotope brain scans, an E.E.G. (ELECTROENCEPHALOGRAM), which means electrical brain picture, and a slit-lamp examination of the eyes. I also had a lumbar puncture, which was performed by two young student doctors. A lumbar puncture is done by giving a local anaesthetic to the base of the spine and drawing liquid from the spine through a very small tube. After a lumbar puncture you are advised to lie flat on your back for twenty-four hours to prevent headaches. The two young doctors who performed the lumbar puncture, which I might add was painless, told me after that they had never done one before and they had only ever practised on an orange (I would probably have been even more worried than I was had I known this before.)
The other test that I had was a C.A.T. scan (COMPUTERISED AXIAL TOMOGRAPHY). For this scan I had to go to the Western General Hospital. It was a new machine and I was to be the first patient from ward twenty-eight to try it out. The thought of being the first worried me slightly, especially as none of the staff had ever seen it, so I was going on a journey into the unknown by myself. On arrival, I was taken into a room which was divided in two. In one half there were large computers which had a couple of small screens where, I was told, pictures of my brain would appear. In the other half was what looked like an enlarged automatic washing machine with a dentist's chair in the front of it.
As I was being strapped into the chair, the radiologist explained that the chair would be pushed up to the washing machine and my head would be placed in the hole where the door should have been. Then a bag would fill up with cold water and mould itself around my head, to prevent me moving my head. When this was done, the computer was switched on and the main part of the machine rotated around my head extremely slowly. As the machine rotates, the computer "slices" the brain into very tiny segments, taking pictures all the time. When the first lot of pictures had been taken, I was released from the chair and given a very large injection of iodine, a dye which flows through the brain. After the iodine had reached the brain, I fainted and then I was sick. It was a really weird feeling as the iodine hit the brain which, they told me, was why I fainted. When a couple of minues had passed, I was strapped back into he chair and the whole process started again. It was a very welcome sight when the radiologist entered the room with a cup of tea. Whilst I was enjoying this much longed for cuppa I began to wonder what on earth could be wrong with me that needed all these horrible tests to find it.
They had all the test results back but for some reason one or two of them were repeated. During these investigations, doctor's exams were taking place. The consultant was one of the examiners, he also provided patients for the doctors to work with. He asked me if I would mind helping out, I said that I didn't. I never gave it much thought at the time but later I realised that he must have known then what the diagnosis was. For two days I was asked questions and examined by other doctors, who then had to go and report their findings to the examiner. I never knew whether any of them were right or wrong.
I was sitting on the bed along at the men's ward one morning when, in between candidates, the consultant put his head round the screens and said "Mrs Rose, you have Parkinson's Disease", then he left. Here I sat in a strange ward with the screens closed round me, shut off from the rest of the world, or so it seemed, wondering what Parkinson's Disease was. I was twenty-two and I had never even heard of it. I desperately wanted to know whether I would die and whether or not my children would inherit it. But I had another hour or two to wait before I was able to get my questions answered.
It was left to the ward house-doctor to speak to me. He drew up a chair and asked what the consultant had said. I repeated the consultant's words and then told him of my fears. The young doctor, who couldn't have been much older than me, looked at me with what I thought was sadness in his eyes. He told me that Parkinson's Disease was not fatal but it was incurable but my children would not inherit it. He went on to say that very little was known about it and that drugs would keep it under control; also that it was a degenerative disease.
The next day I saw the registrar who sat and had a chat with me. He told me very much the same as the young man the day before, only adding that it is usually a disease that only affects elderly people and that it was extremely rare for someone so young to get it. I asked him why I had it and where it had come from. His reply came as a bit of a shock. He said that I probably had the brain of an old woman; then he laughed and said he was only joking. But for some reason these words have always stuck in my mind. He didn't say much more than that. There was no cure for it, but I was young and one might well be found sometime in the future. He then said I would be started on a drug called Sinemet the following day and that I would be discharged in a few days and would get a follow up appointment for the clinic.
On my return home I went to the library and took out some books on Parkinson's Disease. They were mostly written in medical terms so were not really much use to me, and I did not learn very much. It was about a year later when the consultant got a new registrar, who is now my consultant, that I began to learn more about the disease. It was he who opened my eyes and told me exactly what the disease would probably do to me in the future. Something that no other doctor had taken the time to do.
Some months after diagnosis I was out shopping with the baby. While I was in the chemist's shop I started shaking all over, although it was more obvious in my hands. A woman customer approached me and with a hint of bitchiness in her voice enquired as to whether I had had my morning drink. If not would I like her to get it for me. I was so stunned that I was left speechless and very upset, so much so that the tremor became worse. The staff in the shop were very good. They knew me quite well and also that I had Parkinson's Disease. One of the assistants politely asked the woman to leave, while another took me and the baby through to the back and gave me a cup of coffee. Afterwards she drove me home.
It really took me a long time to get over this, even today I can still hear that woman's voice. Both my parents were disabled and I can remember children making fun of them, but for it to come from an adult made it worse; they should know better. People can be so cruel. Maybe some of it is just nastiness but ignorance could also play a big part in it. The Parkinson's Disease Society is trying to open people's eyes about Parkinson's Disease. It is a disease which ordinary people know nothing about, and those who do associate it with old people. Maybe people would not be as hasty to belittle disabled people if they mixed more with them. They would then find out that they really are the same as themselves.
- Back to 2. "An OAP at 18": The Disease
- Forward to 4. "An OAP at 18": 1977-1980
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