6. "An OAP at 18": 1985-1986

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6. "An OAP at 18": 1985-1986

It became necessary for me to have a short stay in Astley Ainslie Hospital again. The drugs were not having very much effect and it was becoming increasingly difficult to perform even the simplest of tasks. The only time I was able to move well, was when 'the jerks' took over. The problem with this was, that I moved too much and I could not stop it. My right leg would kick up so high, I reckon I could have made the The Bluebells dance troupe. Peter once said that I looked like a horse on dressage and it has even been suggested that I was practising the march of the German army.

The doctor started me on Selegiline straight away but within a couple of weeks it had to be withdrawn because my breasts became larger. At the same time they produced a rather unsightly discharge which was greeny, brown in colour. They also gave me some discomfort, and Dr Pentland hoped it would clear up itself.

The time in between drugs when mobility was good, seemed to be getting less and less. I had become a lot more dependant on Peter and the children. Once again, I went into hospital. This time I stayed for eight weeks. It was during this stay that I first began to think about what a burden I might become to my family. Then I kicked myself . I kncw that this was not the case and my family loved me no matter what. I still longed to talk to someone with the same problems, but I was on my own.

My breasts were still giving me an awful lot of trouble, they were very large and lumpy under the arms and now the discharge was heavier. Sister McBride, the ward sister, bound me up with a sheet, just as they used to do to nursing mothers. She thought it might provide some relief. It did. All the same, Dr Pentland decided that it would be wiser to get another opinion, so I had an appointment at the breast clinic. A nurse accompanied me and the doctor that examined me, told me that everything was fine. He said that my glands had become blocked after the trouble I had had several years before, and that tiny cysts kept on forming, which explained the lumps, and that the discharge was the result of them bursting. He went on to say that, providing they continued to burst, everything would be all right and that I would most probably have this problem all the time I took drugs. He finished by saying he hoped he would never see me again, as a second visit usually meant that he would be holding a knife in his hand. W
hat a nice man!

During this stay, Dr Pentland arranged for me to have a chat with the psychologist. Recently, I had not been wanting any physical sex with Peter, I just wanted him to kiss me and to caress me. I still loved hirn, and I could not understand why I felt like this.

My consultation with the psychologist took place in a tiny room. He also had a student with him and he asked if I would mind her sitting in. I said that I did not. "Let's start at the beginning", he said. All of a sudden I was overcome with embarrassment. I knew that it was necessary to tell him everything, if I wanted help. So, I began by telling him what the problem was. Then the questions came. He went right back to when I was a child; what kind of childhood I had had and thc jobs that I had workcd at. Then he specifically wanted to talk about the last nine months, from the time I had the hysterectomy.

I had had the hysterectomy nine months ago, and about six weeks later I started minding a friend's little boy every morning while she went to work. A couple of months later my sister gave birth to a little girl and then within a few weeks my friend announced that she was expecting a baby but I would still be able to mind her son until the spring. She didn't keep well and was advised to give up work, which meant that I was no longer required to look after him. Of course I missed his company. I had been unable to work for quite sometime and at times I had felt quite useless. Looking after my friend's son made me feel needed and useful. It was at this point that I had an overwhelming desire to have a baby myself and also the point where I lost interest in sex. I was at my wits-end, I thought I had become frigid. We were still a young couple and we had always enjoyed a good sex life, even though at times I was so stiff. It must have felt to Peter as though he was making love to a corpse.

The psychologist sat listening to me and after a few minutes he broke the silence. He said that subconsciously I was telling myself that you only have sex to produce babies and that because of the hysterectomy, I could no longer have one, so there was no point in having sex. He said that the problem had been made worse by people close to me having babies and also that my services were no longer required by my friend. The answer was to keep telling myself that you have sex with your husband because you love him and not just to produce a baby. What had seemed like a serious problem to me, had been discussed in detail and now didn't seem so hard to deal with. The psychologist told me that feelings like this were often felt by women who had undergone a hysterectomy. He also said that the condition was not helped by my lack of mobility.

When I returned home, I battled hard with my feelings. It took a while but the sessions with the psychologist made it a lot easier once I knew where the problem lay.

My condition continued to cause problems. After I had taken my drugs I would get hardly any relief from the rigidity, the slowness and the tremor. The only time I got relief was when I became troubled with 'the jerks'. They were a lot worse now, affecting mostly the right side of my body and now fairly strong. In fact, they were so strong at times that the safest place for me was on the floor or in a chair. Any task that I attempted in this state, usually resulted in failure. So, the Clonazepam was withdrawn and Valproate was tried, but this also failed. These two drugs are anti-convulsants and are sometimes used for relaxing the muscles.

In the autumn, Dr Pentland decided that I should enter hospital for another drug holiday. He said that it would probably be for a few months. In fact it was three months all together. All the drugs except Disipal were withdrawn. I became extremely immobile. I had not had a total withdrawal for quite sometime, so now was the time to see just how much further the disease had spread.

My body was so used to drugs, that within twenty-four hours of withdrawing them there was a marked deterioration of movement. I had a constant tremor and all other movements were almost at a standstill. I find it difficult to say which of these disabilities I could tolerate, as neither is very pleasant. The tremor I can put up with for only a short while as it can be very distressing when I try to eat or drink, (messy as well), and it becomes quite uncomfortable when the muscles begin to ache. The slowness is extremely frustrating and requires a great deal of patience. Some things just require a lot of time and effort, but other tasks become so difficult to complete, or even to start, that it becomes necessary to seek help. At times, when the rigidity is bad I feel like a living corpse, I often describe the stiffness as having rigor mortis or that I am in need of a good oiling.

After a couple of months without drugs, during which I became very dependant on others and somewhat miserable, the time had come to get me mobile again. Dr Pentland decided that I should continue to take Disipal alongside a new drug called Madopar. So the two drugs were started, first on a low dose and then increasing them slowly over the next two weeks. I also received both physiotherapy and hydrotherapy every day during my three month stay in Astley Ainslie Hospital .

I was involved with the occupational therapist far more during this stay than at any other time. I saw her on the first day to do some tests. These tests were really very simple, in fact when I saw them for the first time I thought they were very childish and I wondered why she wanted me to do them. Perhaps she thought I was not all there and that anything harder was not within my capability? How wrong it was for me to have these thoughts; if I had only waited a few minutes longer I need not have worried.

The Webster Scale was the name given to these tests which consisted of:

Then there was a short memory test like remembering phone numbers, or a small shopping list, and then I had to write down my name and address. The occupational therapist watches very closely and times your performance with each hand and records the results on a chart. So, as I said, I saw the occupational therapist on the day I was admitted and did these tests just before the drugs were withdrawn. While I was off the drugs these tests were repeated twice a week, then once I began taking them again, they were repeated every other day. These seemingly childish games proved to be extremely valuable as, by doing them on a regular basis, they are able to tell just how well you are improving. It is very gratifying to watch yourself take forty-five seconds to write your name and address when it took four minutes a few weeks before. So, fairly satisifed with the new drug regime I was allowed home.

However, it was not long before things began to go wrong. I did not get very many good spells. I either had 'the jerks', which were now getting more severe, or I was very stiff, slow and shaky. There was no happy medium. Housework was becoming increasingly difficult. Although my family chipped in and helped a lot, I felt that it was very unfair for my husband, my daughter who had just started work, and my son to come home at the end of the day and clean toilets. I had been finding it difficult for a while but I did not want to give in. I even vacuumed the carpets on my hands and knees. That must have been some sight. Anyway, I just had to give in for their sakes as well as my own. So I applied for a home-help and within a few weeks I had someone to help me.

We got on very well at first but then I began to resent her. I hated having to say what jobs I wanted her to do. Then, after she had gone, I found myself examining her work to make sure the end results were as good as mine would have been. About the same time I stopped doing my physiotherapy which I did myself at home every day. And so, with the drugs not working, no exercises and feeling so useless, I began to feel sorry for myself. Dr Pentland decided to admit me once again for adjustment to the drugs.

Whilst we were trying to find a happy medium with the drugs, Dr Pentland asked the psychologist to have a chat with me. It turned out to be a very rewarding conversation. He remained very silent as I poured out my worries. I told him about the way I behaved after the home-help left the house, and the way in general I felt about myself. Anyway, the long and short of it was that, I was finding it hard to accept that I just wasn't as able as I used to be. This feeling not only applied to housework but to other things as well. He said it was obvious that up to now I had always managed to fight the disease and that now it had finally got the better of me, felt totally and utterly useless. And because of these feelings I rejected anybody who wanted to help me. Now that I knew what was happening to me it seemed easier to handle. The situation is better now, although there are still the odd occasions when I find something difficult that these feelings return.

I was discharged but six weeks later I returned for a short stay. 'The jerks' were causing a bit of concern. I now found my ankle "giving way" quite a lot which often resulted in me falling. It was not like me to fall so naturally I got frightened. Most of my injuries were just bumps and bruises, but everytime I fell I would just bury my head in my arms and cry my eyes out. I did not cry because I had hurt myself, although at times I did. I cried because I felt such a fool. Once I fell in the back garden and the first thing I did was to get up quickly to see that none of the neighbours had seen me fall. When I got back into the house I found that I had badly grazed my knee and the blood was running down my leg. Then I cried.

On one occasion Peter's sense of humour took pride of place. I had been standing in the kitchen, when I fell backwards and smashed my head against the back door which is glass. Luckily for me, it was special reinforced glass put in for just this reason. Anyhow, there I was Iying on the floor, crying and holding my head, when Peter came rushing through. He immediately enquired as to whether or not I had broken the glass and that he hoped I had not got any blood on the carpet. My first reaction was to shout at him but afterwards I knew that he was cheering me up.

The dosage of the Madopar and the Disipal were juggled about a bit. Another drug, Dantrolene, was added to try and lessen the involuntary movements. But it did not make any difference. During this stay Kate, the physiotherapist, asked me if I would like to try the vibrating chair. It was to see if the vibration would relax the muscles which were extremely tight. I said that I would give it a try. After all you don't know if something is going to work unless you try it.

So, twice a day I would sit back in this large, brown chair for fifteen minutes each time. The only way I can describe the feeling you get while sitting in this chair is that you get a tingling over every part of your anatomy. It is quite a nice feeling, much better than the awful numb feeling when the chair is switched off. The results were pretty impressive. For a good hour afterwards I felt relaxed and mobile. The only snag was, you could not get these chairs from the social services and I lived too far from the hospital to use it as an out-patient.

However, Kate thought it might be worth trying a hand held massager but as none were available at that moment I would have to wait. When she acquired one she would phone me and I would pick it up at the outpatients. A month or so after discharge I collected the massager. It proved to be of very little use because you have to move the device up and down each limb in turn. The first limb would feel great, but by the time you had finished the next one, the previous one would be stiff again. The only one who got any benefit was the dog. She loved having her tummy massaged.

Kate then decided to try a vibrating cushion. Once again there was a problem, there was only one in the hospital. The problem was solved by travelling in an ambulance three days a week for a three week trial. I gained quite a lot of relief from using the cushion, but by going on a Friday I was able to borrow it for the weekend.

These cushions cost around five hundred pounds and hospital funds did not provide such things. Dr Pentland and Kate approached the Parkinson's Disease Society to find out if they could help. They did, on condition that, if ever I no longer required it, it was to be used by another patient of Dr Pentland's who had Parkinson's Disease or be returned to them. But like everything else I try it only gave me relief for about five months. It was marvellous while it lasted.

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