Part 2: Change the name; reality stays the same
I must have been “lock-jawed” or else my voice had gone, I didn’t seem to be able to speak or shout to him. No sound came from my mouth. I could not believe it. I was in total shock.
I had been treated for MS for the past 14 years! It couldn’t be true! The consultant did not appear for the rest of the day. He had left instructions that I was not to have any medication, a complete and sudden stop on all medication.
At the evening visiting hours the look of bewilderment on the faces of my family was unbelievable. Marie and I were devastated. Was it 14 years of misdiagnosis? Who was right and who was wrong? Inside I was very confused. I confronted the consultant, but he didn’t like the cross-questioning about the two different opinions. His answer was that I was to have an MRI scan; this would prove that I did not have Multiple Sclerosis. This turned out to be the case. If I had had MS a yellow shadow would have appeared on the brain.
I became very angry and confused. The world and its mother seemed to have opinions on the course I should take. Should I seek other opinions? Should I take legal action against the previous consultant? I had some thinking to do.
When I was discharged I was given slightly different medication to what I had been taking for MS. In that short time in hospital my whole life was thrown into complete disarray again. For Marie and I, it was anxiety, stress and fear all over again. What was ahead of us?
This time I accepted the fact that I had a progressive disease, just a different name. But what was Parkinson’s disease? I had some research to do again. The information I was given by the hospital was totally inadequate for such a progressive disease. One friend said that I was better off with Parkinson’s – were they right? I had just come to terms with MS and was beginning to think that maybe I had nothing wrong with me in 1974 when I felt so well. Was it possible that it had been some passing illness like a very bad virus? I was quietly and inwardly very angry. I began to ask questions of the medical profession but got no answers. They seem stick together like sheep in a flock. Not one consultant would speak out against another. With Parkinson’s disease the brain is lacking an amount of chemical called dopamine and it is the lack of, and continuous loss of, this chemical that causes the problems in PD.
I got legal advice from a solicitor who charged me a sum substantial of money for 25 minutes’ consultation with a medical consultant. He in turn claimed that he could prove that there was negligence in this case. He talked about a six-figure sum but suggested that I should re-mortgage my house to pay his costs as the case progressed. He would make money out of my illness. The medical profession had no answers and the legal profession had all the answers, but I would have had to take a chance and pay a very high price if they were both wrong. We did not proceed with the proposed action.
It was difficult to put this part of our lives aside and continue on. But this we did for the good of our three children. I often think, should I have taken the chance, that perhaps there was nothing too serious wrong with me at the start. Why should I let someone ruin my life, or had I? Did that person help me or damage me?
Confusion could not describe my inner feelings. Marie and I had been through this before, could we get through it another time? It was to cause a great strain on our marriage. A lot of patience, understanding and mainly the will to make it work helped us. The thoughts of not knowing what was really the correct diagnosis was always in the back of my mind. Why wouldn’t the medical professionals speak to me as a person with brains between my ears? It was to haunt me for a long time.
I developed severe withdrawal symptoms due to having been taken off the medication so suddenly while in the hospital. For three months I did not know what was going on. When I mentioned this to the consultant I was told that it was my imagination!
I know how I felt, and when it was finally admitted that I would have experienced withdrawal symptoms, I was very angry and upset. My opinion of the medical profession took a very sharp dive downwards.
At this time I couldn’t have cared what name they put on my illness as long as I could work. It was very important to Marie that our family grew up in a happy environment and that they would be able to work at whatever job or career they chose. This was our priority.
During this time my father was recovering from an operation for cancer. One of my twin brothers, five years older than me, had cancer of the throat. I was trying to handle these at the same time as the anxiety caused by the change in diagnosis. However, my concern for my father and brother distracted me from my own problems for a while. It helped me to forget about MS or Parkinson’s disease or whatever illness I had.
My father was a positive thinker; he looked reality in the face. When he felt there was something wrong he would ask the doctor questions and demand the truth. He was a supportive father in everything I decided concerning the re-diagnosis and the anxiety it was causing to both Marie and I.
His operation was successful in as far as it gave him nearly two years of reasonably good health. I will never forget the day when I brought Dad to the hospital for a check-up. My mother and I waited in the car while he was in the clinic. It seemed a very long time had passed and I decided to go and look for him. When I found him, he was in deep conversation with the specialist. I knew specialists do not give people that much of their time, so there must be something seriously wrong.
While walking back to my mother in the car, I asked Dad how he felt and what the consultant had to say. He told me that he felt good and that the consultant was very pleased with him. I knew that there was something wrong; Dad was too full of talk and in good spirits on the drive back home. At the first opportunity I got when we were alone, I asked him the result of his visit with the consultant.
Eventually he told me that he had three months to live and that I was not to tell anyone that included my mother. He did not want to worry her and cause any anxiety until it was necessary. We discussed this and he agreed to meet with my brother Roger and tell him the bad news and perhaps he might tell my mother. Roger and I persuaded Dad that it was right that he tell Mom, because she, like most partners, would know if there was any change in routine.
From the day he told Mom that he had three months to live, he put all his personal affairs in order, appointed Roger and I as Executors of the Will. I brought my mother for a walk in the local park while Dad was going through the details of his affairs so to make things as easy as possible for her. It was a strange feeling walking aimlessly with my mother around the park, while my brother and Dad put Dad’s personal affair in order. My own problems did not matter now, as we had to come to terms with the fact that Dad had three months to live. It was a very stressful three months for the family; watching Dad going down and down until finally passing away with his family at his bedside.
My brother also had major surgery for the throat cancer and all the therapies that go with it. He suffered before passing on about eighteen months after my father. My health seemed to be fairly stable during this time, but soon after I began to experience deterioration again.
At first my walk became more laboured and unsteady, on occasions to the point of falling. This progression was worrying because it had a great effect on my ability to work. I was employed as a typesetter, mainly working on the setting of books in a large printing company. I was beginning to find it very difficult to type at a reasonable speed; I could not relate the information from my brain to my hands. While I was reading the copy, my hands were not responding immediately to the information my brain was distributing around my body.
I was putting myself under stress in an effort to keep up with the flow of work. The more I concentrated on the fingers movement the more stressed I became. Because of the stress and anxiety my body was unable to co-ordinate movement and my ability to be steady on my feet became more difficult.
At this stage I was faced with a major decision. If I stumbled while walking through the department, and damaged one of the computers or hurt myself, this would be unacceptable to the company. I could think of only one solution, a wheelchair, but how would I manage the steps and elevated floor where the computers were situated?
I decided to talk to the company doctor about the problem. The doctor’s opinion was that there was not a problem – he had a meeting with management and they agreed to install ramps to facilitate the use of a wheelchair. The time had come when I had to face the fact that a wheelchair was necessary for me to continue working.
I was given a wheelchair from the Health Board. It was strong but very heavy to lift into the boot of the car. There was no option but to use this chair until I could afford to buy a light- weight chair at a cost of £500. The heavy wheelchair was for home use and I carried the light- weight wheelchair in the boot of the car.
As things turned out, I was not the only one of the family to have problems with the wheelchair. Perhaps my 13-year-old daughter, Anne did not realise the situation I was in, because when I came home from work, Marie would have the wheelchair in a convenient position for me to get into. In contrast however, when Anne was in the house, she would tidy up, and put the wheelchair in the cupboard under the stairs. This caused problems for me, especially when no one was at home. Sometimes I would have to struggle to get to the press, pull the wheelchair out and open it to the sitting position. This was a slow a painful process. On several occasions I spoke to Anne about this problem, but she continued to pay no attention to my request.
It came to a point of frustration and anger with me. Why was she doing this? Was she embarrassed? There were times when I could get around the house for short periods of time without the chair, but these were becoming less frequent as time passed. Anne had never seen me “normal” or without illness and yet she did not seem to understand why I should be annoyed whenever she put the chair away. Her only answer was “I am sorry, I forgot”. This went on for some time with always the same excuse. At that time I did not stop to think that she might be having problems with seeing her father in a wheelchair? Was I expecting too much of a 13 year old? Was she embarrassed with her friends? Did I not try to understand her feelings? This carried on for some time on a regular basis.
The wheelchair must have frustrated the whole family at times. The house was really not suitable for five people and a wheelchair. If I was in the kitchen no one could get pass me; I had to reverse as there was no room to turn. The chair was getting to heavy for me to push myself or to manoeuvre around the house.
The following months were difficult, trying to come to terms with this further progression of the illness. I was surprised with the reaction of people that I had worked with for eleven years, they seems to be embarrassed, they did not know what to say and they did not understand Parkinson’s disease or my situation.
For short periods during the day I was able to move around without the chair. This was also a surprise to many and it was difficult to get them to understand that Parkinson’s disease is very unpredictable. I could be walking and suddenly I would freeze or have a sudden ‘off period’ and not be able to move at all. There were nights when I hardly slept, when I crawled on my hand and knees to get to the toilet and back to bed at 5 a.m. I would get out of bed at 6 a.m. and exercise before breakfast. If I did not do this routine I would not make it to work by 8 a.m.
It was not long before this became part of my daily routine, with the added feature of taking the wheelchair out of the car when parked outside the building where I worked and wheeling it (and sometimes sitting in it and propelling myself) into the printing works.
As time passed the time period during which I could walk was getting shorter and shorter. Each day started at 5 a.m. with my daily journey to the toilet and ended at 4.30 p.m. with my daily journey home to meet the wheelchair at the hall door. Marie seldom went out at night.