4. "An OAP at 18": 1977-1980

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4. "An OAP at 18": 1977-1980

After a few months on Sinemet I developed slight involuntary movements (DYSKINESIA) in the face. The dose of the Sinemet was reduced and Diazepam was prescribed as a muscle relaxant to cut down the involuntary movements. It is unusual for someone to develop these involuntary movements so early after the introduction of dopamine, it usually happens when you have been taking the drug for a few years. But I have been told often by Dr Pentland, the new registrar, that I tend to do things differently from what the books say. After taking the Diazepam for a short while I began to feel as if I was daft. I couldn't think straight, so it was discontinued.

I attended the clinic regularly and I always saw a different doctor. The only time I saw the consultant was when I had been staying in hospital, and that was only once, sometimes twice, a week when he did his ward round. Dr Pentland took over as registrar during the early part of 1977. Towards the later end of that year I said that it was very difficult trying to explain to the different doctors at the clinic how my condition differed from the previous visit. A lot of them were fairly young and had never dealt with a young Parkinson's Disease sufferer. Dr Pentland readily agreed and from that day to this I have never seen another doctor.

Throughout the first half of the year, the cramps became much worse so I was admitted to ward 28 again. Some of the tests that were done the year before were repeated. These included an E.E.G., an isotope scan and a C.A.T. scan. They also did a carotid angiogram. Having an angiogram meant that I had to be anaesthetised while a tube was inserted into the artery in the neck into which a dye was injected. The dye passes through the brain showing up any abnormalities i.e. a brain tumour. When I came round from the the anaesthetic I had a large dressing, from one ear to the other. My first reaction was Help, they've cut my throat, but I was relieved when a nurse assured me that there was only a small hole in my neck. To this day I can still see the mark where the tube went in and it makes me laugh to think that they had cut my throat. After the tests had been completed my drugs were changed, the Sinemet was stopped and I started taking Artane. A few days later I was discharged.

Up to now we had been living on the third floor of a tenement and as there were no lifts I had to heave the baby's pram up the stairs. This became increasingly difficult as my walking deteriorated. So with a doctor's line the council gave us a ground floor flat which we thought would be ideal, especially as it had a small back garden. The flat was in the same street where Peter had been brought up and where his parents still lived. We had no idea when we moved of the horrible things that would happen to us.

Not long after we moved into this flat I began to stiffen up, the cramp became worse and the tremor returned. Two months after my last stay on ward 28 I was re-admitted. A second lumbar puncture was performed only this time it was much worse than the first. Two doctors made an attempt to draw fluid from the spine but to no avail, So Dr Pentland was called upon. He managed to get a little fluid out but not without some difficulty. While this is taking place you have to lie on your side and curl up in a ball. There was a lot more pain with this one and I was told to lie flat on my stomach for twentyfour hours or so. I remember this very well because that evening when Peter came to visit, he told me that Elvis Presley had died and I didn't believe him. It was decided to keep me on the Artane and also to start me on Bromocriptine.

I became very depressed as some of our neighbours began to drive us away. Peter was the only one in our block of six who had a job so we were looked upon as snobs. Not all the trouble was caused by them but they certainly helped to make our lives a misery. There were the usual pranks like knocking on the door and running away, but they seemed to do it more because I couldn't walk properly.

Peter and I had gone to great lengths to explain to Ashleigh and make her understand about the disease and what it would do to me and to us as a family. But more importantly we had to make sure that she knew that I wasn't going to die. Unfortunately she became very confused and unhappy. A group of children at her school had started taunting her by telling her that her mum had useless legs that did not work properly and it would be better cutting them off and replacing them with two planks of wood. There were times when they refused to play with her or even talk to her in case they caught whatever it was her mum had. But worst of all was when she came home distraught because they had told her that her mum had just been carted off in a wooden box. It hurt so much to see her in such a state. The headmistress spoke with the kids concerned, but they just kept their taunting until after school. Many times I had seen these same children mimicking my walk and my tremor. It hurt terribly, but the trick is to hide the hurt from them and not give them the satisfaction of knowing they are hurting you. I hoped I would never see my children doing this. After all, I had brought my children up the way my parents had brought me up, that is not to stare, laugh and make fun of those who are worse off than yourself.

We bought a new car, and on the very flrst day some-one walked right round it with a sharp object. On several occasions I would find raw, rotten meat and dirty sanitary towels in the back garden. There were rowdy all night parties almost every night of the week. Complaints to the police were useless. I was at my wits-end and it didn't help me to cope with the disease. The final straw came when we all broke out in spots. A few days earlier I had found an empty matchbox, which was open, at the front door. It was empty so l threw it away. The GP said we had flea bites so the pest control man came to treat the house. He said it was pretty certain that someone had put the matchbox, with the fleas in, through the letter-box.

It was this incident that finally got us a medical line from the hospital, but the council refused to re-house us. Peter was thinking of going back into the army, he also thought of training for a new job that had a house with it. It was suggested by the doctor to get in touch with a social worker who may be able to help us get away from this awful situation. The meeting with her proved to be extremely fruitful.

First of all we had quite a long chat with her whereupon she advised us as to what I would be entitled to as a disabled person. But, she said, the first step was to register disabled, which would prove to be helpful, particularly when I was ready to return to work when Stuart started school. Unfortunately, I was unable to make use of this, as I was not fit to work when the time came.

At first I was very reluctant to register as a disabled person as I felt that I was being labelled different. I did not want to be different. After some serious thinking I realised that I was not different from other people. I WAS a human being. I WAS normal like everyone else on this earth. I WAS just ill.

That done, we were told we would be entitled to a parking disc which would enable Peter to park the car in places that others could not. We applied and I was asked to go for a medical in the health board's office. The medical was to assess my mobility, the office was up on the first floor, no lift. I passed the medical and Peter received the parking disc. A year later I was required to have another medical to renew my disc. The health board had moved to a new building, and the office I had to go to was on the fourth floor. Although there was a lift, there was a long corridor. I passed the medical. Peter complained about the amount of walking a disabled person has to do to get to his office. The doctor-apologised, saying that far more people these days are abusing this system and as a result disabled people were having to pay the price. Renewal of our parking disc is now done by post.

The social worker told us that there were various benefits that I would be entitled to as the disease progressed. All well and good, I thought, but this does not get rid of the disease. She also told me to apply for a bus pass, but I had received one the year before. I would also be entitled to a home help should the need arise.

As luck would have it, part of the brewery moved to the west side of Edinburgh. We applied to the Scottish Special Housing Association, and with a letter from Dr Pentland and the social worker we were offered a house in Uphall within six weeks. The house had stairs but we were desperate, so we accepted.

Moving out to Uphall, which is in West Lothian, meant I had to change from a bus pass to bus tokens. I did not relish this as they were the same size as a five pence piece but thinner. It was very awkward trying to get them out of my purse especially when I had a tremor. When I received the tokens I was given a card as proof of my entitlement. On several occasions I was asked to produce the card to show they were mine. Quite often the conductor would apologise. This again is because certain people abuse the system by using their grannie's. A short time later they followed Edinburgh's footsteps and issued a bus pass with a photograph on it. During the last year they have introduced another service whereby the pusher of a wheelchair may also travel free. Another step allowing more disabled people to get out and about.

Apart from all the emotional problems concerning neighbours I had kept reasonably well with minor changes to these two drugs, but then things started to go wrong. The Parkinson's Disease had started in the left side now, with the cramps affecting the left foot as well as the right and I now shuffled when I walked. My left arm and hand developed a tremor. At the same time I began showing signs of on-off. This describes the situation where the condition changes constantly throughout the day, just as if someone were switching you on and off like an electric light bulb. So, once again, I went back to stay in ward 28. The consultant decided that I should go on a 'drug holiday', in which the drugs are withdrawn for a period of time. At the end of the year the Bromocriptine was stopped.

Over the next three weeks my weight increased from nine and a half stone to almost eleven stone. My breasts grew rapidly and I could express milk quite easily. But for the fact there was no change in my menstrual cycle, and Peter had had a vasectomy, I would have said I was pregnant. I was re-admitted to ward 28 where a number of blood tests were carried out. The results showed that my hormone level had rocketed due to the withdrawal of Bromocriptine. It took almost three months to rectify itself. The extraordinary happening was reported in the British Medical Journal.

When my hormone level had returned to normal, I was admitted once more to ward 28 and was immediately started on Sinemet with the Artane. It was necessary for me to stay in hospital every time I started a new drug because it was important for them to make sure that I had no adverse reaction to the drug. Also the drug would be given in a low dose and slowly increased up to the required dose.

It was about this time that I became aware of all the things that were happening to me. Up until now my feelings were kept pretty much to myself and I hadn't thought much about the future, and it all came to a head during my last visit in the hospital. Ward 28 was a medical ward but there were a lot of elderly ladies in there, some of whom had been there for a considerable length of time. One or two of these ladies suffered from Parkinson's Disease. They were almost bent double, so much so that their heads were nearly in their laps. They were constantly shaking and dribbling, and they were unable to look after themselves. They had to be fed, washed, dressed and toileted. Even their speech had been affected. What seemed to make it even worse was the fact that other patients completely ignored them. The sight of these poor souls distressed me terribly and I vowed to myself there and then that if and when I became like this I would put myself into a home or even shoot myself so as not to be a burden to my family. Little did I know that by the time I reached my twentyseventh year I would require this kind of help. The picture of these elderly women gave me the incentive to fight to keep myself as mobile as I could for as long as I could.

The sight of these ladies was quite frightening and I started to ask myself what I could have possibly done to be punished with such an awful disease. The only explanation I could offer myself was that I was being punished for having a baby at sixteen. The doctors have never been able to give a reason for me having the disease at such a young age, so I confided to Dr Pentland about my thoughts on why I had it. He said he had never heard such rubbish and that I should put this idea out my head at once.

This was really the first time that we had a good heart to heart. We talked about the disease, the drugs and their side effects and the usefulness of physiotherapy. He said that he had discussed with the consultant about trying physiotherapy on me in order to help me keep mobile. His next question threw me somewhat, it was so unexpected as no-one had ever even mentioned the subject before. He asked me if I was having any difficulty with sex. He must have seen the look of shock or surprise, I don't know which, on my face, because he told me not to be embarrassed as it is a natural and important part of marriage and if there were any problems I should say so, so that he can do his best to help. He also said that it is important that I should tell him of anything that is not normal or any worries that I have, as he cannot treat me properly if I am holding things back. After this heart to heart I felt more at ease with him and knew that I would be able to talk to him about anything without fear of being embarrassed.

Within a matter of weeks I again developed involuntary movements after taking Sinemet. These involuntary movements made my right arm and hand jump about uncontrollably. I found it quite embarrassing at times, especially if I was travelling on a bus, when the arm would suddenly start jumping sometimes hitting the person next to you. I usually managed to get a seat next to the window. You have no idea when they will strike, although when you have been having them for as long as I have, you can usually predict the times they would come, allowing you to plan around them.

A couple of weeks later I was again admitted to ward 28 for a few days. The consultant decided to stop the Artane, replacing it with Brizin. I remained on Brizin for four weeks although I felt absolutely no benefit from it. It had only one effect, it made me violent. It was just one violent outburst but all the same it was very frightening. I am not a violent person, I even find it difficult to slap my children when the occasion arises. I really cannot remember what sparked it off but Peter and the two children were sitting watching the television, when all of a sudden I began ranting and raving. At the same time I was hitting him, punching him, kicking him and pulling is hair. Peter just sat there, I picked up his bag, boots and jacket that he used for work and threw them out into the garden. I returned to the livingroom and continued to hit Peter who was still sitting in the chair watching the television. Then all of a sudden a strange calmness came over me, I quickly did a vanishing act up to my bedroom where I cried my heart out.

It was sometime before Peter came up. He had been waiting for me to go down, but I felt so ashamed of myself. I could not look him in the eyes. He sat on the bed beside me and took me in his arms. I did not understand him. Why was he being so kind, gentle and loving? We did not speak for a while, we just sat, gently rocking backwards and forwards. When I eventually spoke, I just repeated the word Sorry over and over again. I told him that I had no idea why I had done it. He told me not to worry, it was probably a reaction to the new drug. On the Monday morning I phoned Dr Pentland at the hospital and he admitted me the same day.

This incident has remained foremost in my mind ever since. I constantly ask myself why he never tried to stop it, even though he thought it was the drug, he could have tried. He thought it best to let it pass on its own without any interference and that it could very well have done more harm than good to stop me. What must the children have thought of me. They looked so frightened. When I went to comfort them I could sense the fear and doubt in them. I explained as best as I could as they were still quite young. They soon forgot about it but I never did and never shall.

On admittance to hospital, I explained to Dr Pentland exactly what had happened that weekend. He and the consultant decided that I should have a short drug holiday. The consultant told me that I would be unwell for a while, I thought he meant I would be sick a lot. So for three weeks I had no drugs at all.

It was at this point that I found out just how far the disease had progressed while taking the drugs. As each day passed the tremor got worse and I became much stiffer and slower. One lunch time I found it very difficult to feed myself, so l left the food saying that I did not feel very hungry. The same thing happened at the evening meal and at breakfast the next day. Unknown to me, the nurses had noticed that I had not been eating and they knew why. So, when lunch came, a nurse tactfully asked me if I would like some help. That did it, the bubble burst, she closed the screens and had a chat with me as she fed me. Dr Pentland came to see me after lunch and I asked him if I could go home. I said that I did not think I was ill enough to be taking up a hospital bed that someone else could have. He told me that I was being daft, that I was just as ill as they were, if not worse, as many of them would leave there cured whereas I would not.

The next day I started taking Sinemet and Disipal. A couple of days later the consultant asked me if I could wiggle my fingers. I told him that I could not. I had not been able to lift my legs off the bed for the last couple of weeks and I had been so excited that morning because I had managed to lift them up. So I told him, that, although I could not wiggle my fingers, I COULD lift my legs. He was not interested and walked away. I felt demoralised. Within a week the drugs took hold and worked well. I was allowed home.

At the end of the year things were not going quite so well, so once again I found myself on ward 28 where I was reassessed. The drugs were juggled around a bit and it was agreed that I should have another try on Bromocriptine.

The house that we were living in at Uphall was situated at the top of a very steep hill. There were no buses and the only way to get down into the village for shopping, the doctor's or even a bus to take you to the next village or into Edinburgh, was to walk or by car. As Peter used the car for work, and I cannot drive anyway, my feet were my means of transport. My walking deteriorated the more housebound I became. The house also had stairs which were now causing problems. We knew they would eventually but we were so desperate to get away from Edinburgh.

Anyway, toward the end of 1980, the social worker told us that the S.S.H.A were building a small scheme of fifty houses, six of which were going to be bungalows specially designed for disabled people. She thought that we stood a very good chance of being allocated one. Both she and Dr Pentland submitted letters to the relevant people, now all we had to do was wait.

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