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5. "An OAP at 18": 1981-1984
1981 was a particularly good year for me. There were very few medical problems. The drugs were keeping the disease under control allowing me to live a little. I was able to start knitting and do some embroidery, which are my two favourite hobbies. Even though I was having a good spell, I had not improved enough to allow me to walk down to the village.
We had good news from the housing office, informing us that our application for one of the bungalows in the village had been successful. This was great news and cheered me up no end. So began regular trips in the car, to the site where the builders were building our new house. It gave me a real boost as I began arranging the furniture in my head. I had no time now to think of my health, I just could not let anything interfere with my new house.
About a month before we were handed the keys the social worker took me down to the house so that I could decide where I would like the toilet placed. While I was there I took the opportunity to measure the windows. We had not been inside before and we would not get back in again until the keys were handed over.
In April 1981, we were made the proud tenants of a brand new house. It was a great feeling, different to the one you have when you move into a 'used' house. I now had no time to think about Parkinson's Disease.
The bungalow is semi-detached, has three double bedrooms, a large living-room, an extremely large fitted kitchen, a small toilet, a large bathroom with a toilet, and full central-heating. All electric sockets and light switches are at waist level and all cupboards are large enough to enter with a wheelchair, and all doors are extra wide. The garden is very spacious and covers three sides of the building. I had great plans for my new abode, both inside and out. The garden was left full of builders' rubble. Peter had plans too, for the garden.
Today, we have a beautiful garden, which incorporates an aviary filled with budgerigars of all different colours. And we have just become the proud owners of the bungalow which has a horse field to one side and a small wooded park to the other side. It is in the country and away from heavy traffic. This is the ideal place to spend the rest of my life, together with my family and, of course, with Parkinson's Disease. He has been around for so long now, I would be lost without him. Of course, it would be wonderful if a cure was ever found, but until then we belong to each other.
I remained quite well for about fourteen months. I was able to go into the village on my own, the first time I had gone out of the house and up to the shops, for some considerable time. It really was a wonderful feeling. Now I could say 'hello' and chat to all the people who I had not seen for sometime. These peopie were always asking my family how I was keeping and I looked forward to telling them myself.
In the Spring of 1982 during the Year of the Disabled, eight children aged eleven and a teacher entered the West Lothian Year of the Disabled competition. My daughter was one of these children and the aim was to find out if the area was accessible for the disabled. These children and their teacher were accompanied by a local policeman. They borrowed a wheelchair and went on a tour of the shops and other facilities in Uphall. They started with their school and found it was totally unsuitable for wheelchair users as there is one staircase after another. It is still the same today. They also found that very few shops in the village were accessible to people in wheelchairs, even the local library was inaccessible. The group were told that a ramp would be built but we are still waiting. The council do run a mobile library service but even that is useless, there's no way to board other than steps. The health centre and a couple of pubs came out on top. So the thing to do is go to the pub, get drunk then wheel yourself to the doctor for a hangover cure.
Housing for the disabled in the area had just had a boost with the completion of a small estate of fifty houses, six of those being paraplegic bungalows. We had just moved into one of these so Ashleigh was able to contribute quite a bit on this suject. I was asked if I would allow the others to have a look round the bungalow, so they could see for themselves what adaptations had been made to make life easier.
It made me very happy when their picture appeared in the newspaper announcing that they had won first prize in the West Lothian Year of the Disabled competition.
In the summer, my younger sister spent her holiday with us. She wanted to stand on top of Arthur's Seat and look over Edinburgh. Arthur's Seat is an extinct volcano in Holyrood Park behind Holyrood Palace, and reaches a height of 822 ft. I have been to the park a couple of times, but only to feed the ducks, not to climb up an extinct volcano. So, one Sunday we took a picnic and set off for Arthur's Seat. I had no intentions of joining them, I was quite content to stay at the bottom and lap up the sun. Besides my walking wasn't too good. But Peter had different ideas. I was to join my husband, my sister and my two children. My protests seemed to fall on deaf ears.
So off we went. Ashleigh and Stuart accompanied Tracy, my sister, while Peter took me under his wing. To say he helped is an understatement. At times I felt like a woman from the stone-age, he more or less dragged me to the top. We had a few stops on the way up but I got there, eventually. It was exhilarating, the air was so fresh and the view of Edinburgh was something not to be missed. I knew this was something that I would never had seen had I not been bullied into going.
The hairy part came next. Descending. Going uphill is hard enough when you have a stoop and a shuffle but going downhill is something very different. As the feet stick and the body stoops, then the top half takes over the bottom half, often resulting in a fall. So on the descent Peter had to act as my brake. We reached the bottom in a fraction of the time it took to go up. And Peter and I reached the bottom first. Tracy, Ashleigh and Stuart were way behind. What I needed now was a well earned seat and a cup of coffee. I was very tired but I would not have missed it for the world. I felt that I had really achieved something, and I was very proud of myself.
The good spell didn't last long. I began to seize up pretty fast and I found it hard to walk, dress, wash and even feed myself. I became depressed and started wondering if I would ever be free of this thing that had taken over my body. I felt that I had no control over my body or even my life, at times. I desperately wanted to talk to someone who was nearer my age, with the same disease and the same problems. Unfortunately, I could not find anyone, only the old ladies in the hospital. I was going back to ward 28 again, so l thought I would speak to Dr Pentland about it.
I spoke with Dr Pentland about my urgent need to talk with another young sufferer of Parkinson's Disease. He told me that he did not know of anyone, as all his other patients were a lot older. He suggested that I write to the Parkinson's Disease Society, to find out if they had anyone who would like to communicate. So I promised myself that I would do just that, quite unaware of the response that awaited me.
I spent six weeks in the hospital-a short drug holiday. The disease had worsened, and it is not until you have a break from drugs that you find out just how bad it has become. It was during this spell in hospital that physio-therapy was introduced to me. The physio-therapist who had been given the task of loosening me up was Kate, who became a close friend and confidant. I was extremely rigid and I felt that all I needed was a real good oiling. It took quite some time and a lot of hard work, on Kate's part, to get me loosened up. During this "holiday" only the Sinemet was stopped, and I continued taking Disipal and Bromocriptine. I started taking the Sinemet again, together with Lisuride, a new drug which was on trial.
On my return home, I decided to get in touch with the Parkinson's Disease Society. Having given it much thought I came to the conclusion that it would probably be in my best interest to become a member of the society. So I found the address and telephone number in the yellow pages, of the local branch in Edinburgh. I rang them up and enquired as to how I could join. I was asked a few questions including my age. I said that I was only twenty-seven years of age. Then I was asked if I had been in hospital for diagnosis, and were the doctors sure it was Parkinson's Disease? When I replied that they were, an apology was offered, saying that they had never heard of anyone so young suffering from this disease. I received my membership a few days later. I shall say more about the society in a later chapter.
I responded fairly quickly, and was able to take up embroidery, something I have always enjoyed doing. So I began to embroider a picture showing a man fishing at night under a beautiful red sky. This picture took me two years to complete. I put my name to it and as I don't see my mother very often, I presented it to her and she has had it framed. I have always enjoyed embroidery and I refuse to give it up. Even if I only managed a few stitches a day or a week, it is a few stitches nearer the end. I am now in the process of embroidering a set of eight pictures of budgerigars, of which three are completed. I managed to do a bit of shopping again and even to weed the garden. I always tried to avoid walking with neighbours as I walked so slowly. They would try and adjust their pace to match mine, but it was impossible and I would end up shuffling. Even after all this time I was still very conscious of other people looking and talking about me. Also I didn't want to embarrass those who walked beside me, but of course I wasn't.
I know how stupid it is to feel embarrassed, but there are people who make you feel this way, as I mentioned earlier. Then you come across those who make you feel guilty for being disabled and those who do not believe that you are. Just because they cannot see callipers or walking sticks and your are not in a wheelchair they simply don't stop to think that you may be disabled. Peter and I found this a common problem at a supermarket where we regularly shop. After filling our trolley we would make your way to the checkout with the "ten items or less and disabled persons", and join the queue. Then some kind person, not necessarily in the same queue, would point out that we were at the wrong checkout. I would turn round, and to Peter's horror, I would tell them that I was disabled. Peter said that I should not have to explain myself to anyone. After that he would turn to them, point to the sign above the checkout, and then ask them if they could read.
He had the same attitude with able-bodied drivers who parked their cars in a space reserved for disabled shoppers. If all the spaces were taken, he would check that they displayed a disabled person's parking disc. If they did not he would park in front of them and make them wait whilst we shopped. In these supermarket car parks there are usually hundreds of spaces of which only a handful are reserved for the disabled. It makes me so angry. I have often thought that these offenders should be penalised as they would if they had parked on a yellow line. Maybe they should be banned from supermarket car parks.
The children wanted a dog and had been pestering us for a long time. So as I had been keeping well for a while we decided to get one on the assumption that they helped look after it. Also a friend of mine thought it a good idea, as it would keep me company and it would also get me out of the house for a short while. I felt that I had really achieved something the day I travelled roughly twenty miles by bus, on my own, to the cat's and dog's home, where I bought the blackest, saddest mongrel. Then I took another bus about five miles to my in-laws with the dog, whom we named 'Heidi'. they, too, were astonished at my escapade. My friend was right. I took the dog to the shops once a week, and I managed to take her over to the park on most days. She is a very clever dog, in that she always seems to know whether I am having a good day or a bad day. She knows that on good days I will be able to take her over to the park, and on bad days she knows she has to wait until the children come home.
We all grew very fond of her but she and I have a special relationship. She follows me absolutely everywhere, each time I move she moves too. When I get 'the jerks' and thrash out violently she still sits beside me on the receiving end of some pretty hard thumps. It's just as if she knows that I am not doing it on purpose. There was an incident when she was about six months old, when we thought she was doing to die. Three of my tablets were on the table beside my coffee. They were just a bit too near the edge, although I didn't think so at the time. She jumped up putting her front paws on my knees and before I knew what was happening she had swallowed them. I scolded her and thought she would be sick and that would be that. But at first she acted as though she were drunk and then fell asleep. About ten minutes later she started being sick but she was still asleep. I contacted the vet who wanted to know first of all the name of he drugs and what was in them, and as I didn't know he asked me to get in touch with Dr Pentland, who promptly told me what I wanted to know. By this time the dog had woken, and although she was sitll vomiting, she had now developed a strong tremor. I phone the vet again with the ingredients of the drugs and gave him an update of her condition. He said that as she was vomiting she would be all right and would probably sleep it off. He explained that the drugs had had a reverse action on her in that they had given her temporary Parkinson's Disease, which would wear off as the drug worked its way out of her system. I probably own the only dog to have experienced its owner's illness.
This latest good spell lasted only six months, when, gradually I was becoming more and more immobile. Back to ward 28 I went. This time there were further adjustments to the Sinemet, Disipal and Lisuride. the Bromocriptine was withdrawn altogether.
About this time Dr Pentland obtained a consultant's post at the Astley Ainslie Hospital, Edinburgh. I considered myself very lucky when it was agreed that I could remain one of his patients. For a few months, however, I had to stay at the Infirmary. Just after Dr Pentland left, my consultant died suddenly. This meant that I transferred to Astley Ainslie Hospital a bit sooner than planned.
Throughout most of 1983,1 had been having extremely heavy periods accompanied by severe pain. So I went into hospital for a D&C, which means they clean out the womb by means of suction. An appointment was made for me to visit the out-patients in three months time, to let the doctor know whether or not the D&C had helped. He made it perfectly clear to me, that if there was no improvement, then the best thing would probably be a hysterectomy.
Things were not going well at all. My menstruation cycle had not improved, and now I began getting a lot more involuntary movements which I aptly called 'the jerks'. Peter said that I looked like a horse on dressage, because my left leg would kick up quite high and my arm would also jump about. When I did not have 'the jerks', I became quite rigid and slow. So I was admitted to the Astley Ainslie Hospital. For three weeks my drugs were juggled about until we found a happy medium.
My stay in Astley Ainslie Hospital was very pleasant. It is a rehabilitation hospital where, apart from the geriatric unit, they teach people with head injuries, stroke patients and various other disabling illnesses how to live again. On many occasions I have heard it described as 'a miracle factory'. I have met a couple of people who have been told that they would probably never walk again, and yet, after many months of hard work with therapists, they have walked again .
This holiday camp disguised as a hospital has a very relaxed feeling about it. When your therapy has been completed for the day, your visitors, if you have any that is, may take you out for coffee etc. On occasions when it is quiet, some of the nurses might take you shopping or for coffee. Two nurses once took me and another patient to the cinema. The ward sister often runs trips for the patients with nurses, some of whom may be on their day off, and visitors helping to push the wheelchairs. I have been to the zoo twice, the butterfly farm and the crystal factory and on each occasion we have taken a picnic .
There are small parties for patients' birthdays, and they often celebrate events through the year. I can remember a Valentine's Day party organised by the staff for their patients on all four wards. We had a marvellous time, plenty to eat and drink, juice of course, and lots of games. The evening came to an end with all the able-bodied people taking a wheelchair and performing The Conga through the hospital grounds.
In the summer, barbeques are held in the grounds and meals are served outside on the patio. Even a firework display, minus the bonfire, is held on 5th November. All that's left for me to say about Astley Ainslie Hospital, is that for me it is the best place to be in order to gain all the help needed to make life more pleasant.
About six weeks after my discharge from hospital, I had an appointment with the gynaecologist. He enquired as to how I had been doing and I informed him that there really was no change. He explained that all the drugs I had been taking and would continue to take for the rest of my life, had disrupted all my hormones. This was also the reason why I was always so tired. he went on to say that he had discussed the situation with Dr Pentland and they had decided that it would be in my best interests to have a hysterectomy. He disappeared for a moment and returned with a red book tucked under his arm. This, he announced, was his operations book, and made me an offer to have the operation in six weeks time. I felt quite numb. I had not expected this to happen quite so quickly. So many women have complained about having to wait for so long.
Throughout the journey home I remained quite numb. Although I entered the clinic expecting to be told this was going to happen, it still came as something of a shock to me. As soon as I returned home and had closed the front door, I could control the tears no more. Peter tried to comfort me, wondering why I was so upset about it when I had had a pretty good idea it was going to happen. What was hurting the most, was the fact they they were going to take away my womanhood.
May 4th was the big day, so I went in two days earlier, to 'settle in' they said. I managed all right until the night before, when the beds were rearranged. Mine had been moved to the top, which I learned to my dismay, meant that I would go under the knife first at 8.30am. I just hoped the surgeon had not had a late night.
The operation went very well and everyone was surprised at my rate of recovery, especially as my drugs had been stopped and my mobility was somewhat reduced. Dr Pentland wanted me to stay at Astley Ainslie Hospital for a couple of weeks to convalesce. but I protested. I had spent enough time in hospital and I promised him and the other doctors that I would rest. I recovered very well. In fact it was to be some months later when things began to wrong.
Dr Pentland told me at the clinic, about four months after the operation, that it would be in my best interest to have a wheelchair in the house. I could no longer go out of the house on my own, and there were times during the day when 'the jerks' were so bad, that it became impossible for me to stay on my feet. My pride said "No", but my head said "Yes". It made perfect sense, it was going to help the family, allowing us all to go places again, plus the fact it was for my safety as well as anything else. But my pride kept telling me that I would be even more conspicuous than before.
At first I would only use the chair outside the house if we were somewhere where I would not be recognised. It took a while longer before I would let anyone push me out locally. They had seen me walking and I did not want them to think that I had given up. I told myself that it would be better if I was to move to a different area where the people did not know me. However, I quickly realised that by maintaining this attitude I would become a recluse. I know now how stupid I had been, to have those ridiculous thoughts. Many people told me afterwards, that it was really nice to see that I had been given a wheelchair allowing me to get out and about.
- Back to 4. "An OAP at 18": 1977-1980
- Forward to 6. "An OAP at 18": 1985-1986
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