7. "An OAP at 18": 1987-1988

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7. "An OAP at 18": 1987-1988

I had been experiencing several bouts of kidney and bladder infections during the last seven or eight months. No sooner had I got over one than I would come down with another. Each infection would affect me more than the previous one. I found that I was spending more and more time pulling my clothes up and down which proved very awkward when I was not able to move very well. To my dismay I began having accidents.

My GP decided to send me for a kidney x-ray. The x-rays showed that my bladder did not empty completely so what remained was causing all the infections. The doctor suggested that when I passed water I return fifteen minutes later to pass more. This task proved to be too difficult so another alternative had to be found. A drug to help me pass water was added to the menu. I was sure that, if you turned me upside down and gave me a shake then all the pills would come pouring out. It seemed to me that very slowly my bodily functions were giving up and could only be worked with the aid of drugs. And I was still only thirty-three.

Kate and I went to Lancaster for a seminar for young sufferers. Also at this seminar was a doctor who gives all his time to research into this unwanted alien. Dr Pentland had asked him, via Mary Baker, if he would have a chat with me and then offer some advice as to what we could try next. I learnt from Dr Pentland that he had suggested three courses of treatment that we might try. So after some discussion a date was set for me to be admitted to try the first.

The plan was to have a massive increase of Madopar from 375 mg a day to 1000 a day. Dr Pentland would have preferred to increase it slowly, but the doctor from London said to increase it in one big jump. So off we went.

What a terrific surprise I got! Neither the nurses, Dr Pentland nor myself were prepared for what took place about half an hour after the first dose. 'The jerks' came and they were so violent it was unbelievable. I had been sitting in my wheelchair as my walking was not very good prior to admission, when my arms and legs started thrashing about. So severe were they that it threw me out of the chair and onto the floor. A couple of nurses picked me up and promptly took me back to my bed. The nurse came too, as, when I put my arms round her neck to enable her to get from the chair to the bed I jerked so violently she had to go down with me or get hurt. Once I lay on the bed I was able to let it take its course and that took two and a half hours.

Over the next two days we all persevered. 'The jerks' were so strong that I had to lie flat as I would move about the bed. It was all over my body but much stronger down my right side. I was continually thumping myself in the face and the breasts. Sister McBride was concerned about this after all the trouble that I have with them. Her answer was to restrict the movement. She tried strapping me to the bed with folded sheets, that did not work because I got out. Next she tried an inflatable splint which when blown up is supposed to be unbendable. But guess what? I bent it or rather the thing inside me did. The only way I could describe what it felt like was that it felt like something inside me was trying to get out. I was bewitched and here was the proof. I named it 'HUGO'. Sister's next idea was to tie a bandage to the bottom of the bed which I could hold on to, it did not stop Hugo but it kept my arm from giving me any more bruises.

No matter what Sister tried to restrict Hugo, he just appeared stronger in another part of my body. So we left him to do his own thing because he always won. Each attack lasted two to three hours and I had them four times a day. As soon as one started I was taken to my bed and changed into my nightdress. I perspired so much during an attack that my clothes had to be washed each time; it is much easier to wash a nightie than a jogging suit. You could count on Hugo arriving at meal times which meant I had to be fed. I was using up so much energy I had to have milky drinks by the gallon.

We continued for a couple more days. During this time I was asked why I did not give in and ask for the drug to be withdrawn. The way I saw it was that I had been so immobile for quite some time now, that I felt it was worth going through hell for a few hours just to have two hours freedom. I wasn't trying to be a martyr as one patient suggested, I just wanted to bathe myself, dress myself, take my dog for a walk and throw her a ball. It was even worth it to give my family a short break.

All the staff, the patients and their visitors joined in the fun. Every day they would say Good morning Helen, Good morning Hugo . Or How are you and Hugo feeling today? . There was one woman who thought it disgraceful that nurses and doctors should laugh and make light of something so serious, but I commend them for joining in; it is so easy to sit and become depressed or just to give in without trying.

Dr Pentland and I discussed the drug and its effect. I decided that I was very happy to continue taking the high dose and to put up with Hugo in order to get a couple of hours mobility. However this was short lived. Hugo's visits lasted much longer and pretty soon he took over completely, giving me no mobility in between doses. Hugo also became much stronger and I spent much of my time on the floor and aching all over. I phoned Dr Pentland and he told me to stop the high dose immediately and to return to the dose I had been on before. This was a bit depressing as it meant that I was back on square one. Dr Pentland decided to wait a few months before trying one of the two remaining suggestions .

I had had high hopes for this large increase n the Madopar. That's the trouble with me. I always show such enthusiasm towards trying something new and then when everything goes wrong, I feel that the bottom of my world has fallen out. Every time, I say to myself I will not get so upset if this does not work . But alas, these words are easily forgotten .

I had been so busy feeling sorry for myself that I had failed to notice that Stuart was exceptionally quiet. Until he arrived home from school one afternoon in tears. I comforted him and we had a heart to heart. It appeared that two boys taunted him by calling him a cissy because he chose to come home after school to help his mum. They told him that his mother was a useless object. This was the first time Stuart had had any bother but it seemed to affect him more than it did his sister when it happened to her. Stuart has always helped me without complaint and it hurt me to see him suffer. As a rule I don't get involved in squabbles between children, but on this occasion I did because Stuart was so unhappy and did not want to go back to school. I telephoned the headmistress who was horrified. She told me that she thought this the worst kind of cruelty that one child could inflict upon another. She spoke to the boys concerned telling them that they should not make fun of people who are disabled. She told them that someone they love could have an accident at any time and become disabled and that they, too, would be upset if fun was made of them. The boys promptly apologised to both Stuart and me.

Just when I had begun to feel better within myself a gentleman, well he was a man anyway, took me by surprise. The local elections had arrived so Peter and I went along to the school to vote. I had a stooped posture, my walking was not very good and most of the time my mouth sags open. In fact, Peter says I look like a fly-catching plant waiting to catch its prey. When we walked in an official took our cards and handed them to another. This man looked at me, turned to Peter and said, Can she write, is she able to put a mark on her own paper? . Nodding silently we took our papers and proceeded to vote. We were both stunned, this was the first time I had been talked over like an idiot.

The same thing happend the following year, only this time we were ready for him. The same man asked the same question. Peter looked at him and said Why don't you ask her yourself, she is not ga-ga. The man looked so embarrassed. He apologised to me and went about his duties.

After the trials with the increase in the Madopar, Dr Pentland decided to wait a couple of months before we went ahead with the next suggestion. This involved inserting a needle which is connected to an infusion pump, into your abdomen every morning. The third suggestion was to try a drug called Lithium. Dr Pentland said that he would prefer me to try the tablet form first, before he started sticking needles in me. He thought there might be problems with needles as I would still have 'the jerks'. So we decided to try Lithium, which is mainly used as an anti-depressant. It is a drug with a lot of nasty side effects and blood tests have to taken once a month to check the level. It had been given to a patient in America for depression and doctors there noticed a slight improvement in his Parkinson's Disease. The drug was then tried on others. Now it was my turn. I must admit I had my doubts about it doing anything as I could not see how an anti-depressant drug could possibly help me or anyone else with the same disease. I was to be proved wrong.

I took the first tablet at bedtime and the second the following night. On the second night I found that I was able to move around the bed much easier than before. That morning I dressed myself; it took a wee while but I did it on my own. My walking also improved. Four days after taking the first tablet the dosage was increased to two at night. The effect was unbelievable. The staff had hardly ever seen me walking but there I was walking all round the ward, across to the pool and the gym and standing up straight. Although I walked in slow motion I did not care, it felt great. Even though I could dress myself I still found my hands would not work as well, but who cares, I had found my feet. So, with everyone amazed at the effect this drug had, I was discharged.

About a week later Peter and I attended the third 'Young Think Tank' weekend which was held in Lancaster. I had been to the two previous weekends, which are held annually, with Kate and on each occasion my mobility was impaired and I was in thc wheelchair. None of the other sufferers and their partners had ever seen me on my feet, except when I stood up.

We arrived at the hotel and after signing in we went to our room. I confess that I did use the wheelchair to get from the car to our room because I was very nervous at the thought of all those eyes on me. I thought I would attract attention and everyone would turn and ask each other if that really was Helen Rose without a chair. However, when we got to our room Peter told me that in all probability the people who knew me would be diplomatic and look discreetly. Besides he said with a chuckle who would want to look at you, anyway? Later we got ready for dinner and made our way down to the reception area where we were to meet old friends, chat and have a drink before we ate.

Peter was right. I was not acutely aware of people looking at me when I entered the reception area but as soon as I left my room I began to shake, my mouth was bone dry and my footsteps began to falter. Peter squeezed my hand, gave me a reassuring wink and smile. He then told me to take deep breaths and start counting. Sometimes I find it much easier to walk if I can set up a rhythm by counting one, two, one, two, or by pretending to step over something. As I was saying I was not aware of anyone watching me, but once I had got seated it became obvious that they had. Throughout the evening compliments were being thrown at me from every angle. They all said much the same thing, how pleased they were to see me on my feet and how well I looked. I can't tell you how great it felt.

The following evening we had made arrangements to have dinner with a couple who have become good friends. Because I had been feeling so good on this new drug I had bought a new dress, the first for a long time. I find I do not feel like dressing up when I can't walk well or when I can't stand up straight or I am sitting in the wheelchair. The feeling of femininity has gone. So I took my time getting ready, I had not felt this good for so long I wanted to look good not just for myself but especially for Peter. There may not be another chance to stand beside my husband and see the sparkle in his eyes when he looked at me and told me that I looked wonderful. The evening brought many more compliments and although I felt a little embarrassed I was beginning to enjoy it. The whole weekend was like the honeymoon I never had.

Just after my return from Lancaster I started having trouble with the waterworks again. Things had been going so well, I had not had an infection for months. Now they were as bad as ever and to make matters worse I seemed not to be able to control it as well as I used to be. I now find that sometimes I can't quite make it. I suffer from migraine a lot and I am usually sick and on these occasions I lose control all together. So now I have to come to terms with the fact that at times I am incontinent. I'm thirtyfour and I wet myself sometimes, what will I be like by the time I am forty. Oh well, I'll probably be like an over grown baby, nappies and all. But apart from this every thing was still just fine and I continued to benefit from the Lithium.

I have remained fairly well since the first day on the Lithium. Although the effects of the drug are not as good as they were in the beginning, there is still a remarkable difference in my mobility compared to what it was before. Everyone comments on my appearance and tells me that they have not seen me look so well for a long time. Just recently the dosage has been cut because I found it very hard to wake up in the mornings. But then the inevitable happened: as soon as I decreased the dose I started slowing down and became stiffer, my mobility deteriorated and I had to use the wheelchair more.

Now that I have to use the wheelchair every time I want to go out, I quite often feel that I am more of a nuisance than a wife or mother to my family. Ashleigh no longer lives at home so poor Stuart has it all to do, along with his Dad. Stuart is thirteen and does a lot more than Ashleigh did at thirteen. Of course I was much more able then than I am now. Apart from the weekly shopping trips in the car with Peter, Stuart pushes me in the wheelchair to the village and quite often he will take me and the wheelchair on the bus to the shopping centre ten miles away. The first time he did this an old man was so pleased to see someone of his age taking his mum out on a shopping spree that he patted him on the back and gave him fifty pence. I love my family very much and, without them I would probably have to live in a home.

The trouble with me is that I always build my hopes up when I start something new, and then if things start to go wrong I get upset, which makes things worse. But this time matters are worse than usual. I tend to get very depressed, which is strange because Lithium is an anti-depressant. Peter says I have become very irritating and am always complaining. I am not aware that I am, maybe just a little, but not to the extent that Peter says I am. I cannot seem to work up any enthusiasm or concentrate for any length of time. It has taken me much longer to write this chapter than the last two put together. Apart from that my memory is playing tricks on me. At times I seem to remember things from years ago better than I remember things from yesterday or last week. Peter says the solution is keep paper and pencil at hand so that I can take note of things. Of course I do this for a while, then forget. Then I forget something important and Peter shows me the paper and pencil again. I forget how many times he has showed me them.

At times like this I wonder what I have done wrong to be punished in this way. Or is it due to somebody else's fault that I have to suffer. I feel that I am being punished in two ways. Firstly, I have this permanent, unwelcome lodger living inside my body and secondly, I am a young wife and mother who is locked behind four walls unable to venture out into the world unaided.

Who can I blame? Can I blame my parents? They both contracted Polio when they were young children and were left with severe disability. But Polio is an infectious disease-Parkinson's Disease is not. So of course it is not their fault. Was it my own fault for banging my head when I fell from a railing that I was sliding down? No. There is no medical evidence to prove that theory. Is it because I was an unmarried mother? What a ridiculous idea. When I pull myself together, I give myself a thorough telling off. How can anyone be to blame. But as yet, there are no explanations as to why the disease occurs. So, for the time being, I blame the operator on the assembly line for letting me slip through Quality Control.

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