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It is 8.30 am on April 5th 2001 as I sit pondering about the past and what life might have been like if my health hadn’t played such a major part in it. It has caused a lot of stress and anxiety to my family and myself. At 55 I retired early due to my illness. However, I am now enjoying a much better quality of life with my family and friends than when I was working full time. My wife Marie is still living with the anxieties and frustrations of trying to understand Parkinson’s disease. It affects the carer much more than one would think. Marie is in fact living with PD although she doesn’t have it.
Part 1: From Multiple Sclerosis to Parkinson's disease
We married on a cold winter’s day in March 1971, and in May 1972 our first son, Simon, was born. Eleven months later, along came Brian our second son. We were happy with our life.
Our happiness was short lived however. In 1974, at the age of twenty eight, I was beginning to experience strange feelings of a weakness in my hands and legs and I had problems with my balance. Very severe headaches were a frequent occurrence and I started to have some falls. In order to have these feelings/symptoms investigated, I was admitted to hospital This experience, my first as a hospital patient, was not a pleasant one. I had a lumbar puncture on my first day in hospital. The consultant was not satisfied with the results of the first one; he decided to do a second one himself. The procedure in itself was worrying because I did not know exactly what to expect or what was wrong. Lying in a hospital bed waiting for the results was making me more anxious.
This was the year of the World Cup Final soccer match between Holland and Germany, so, being a football fan, I persuaded the doctor to allow me home on that day to see the match on television. Once home though, the pains in my body were so severe that I couldn’t wait for the end of the match. I remember asking someone to bring me back to the hospital. Within two weeks the hospital consultant had the results of the various tests that they had done on me.
They did not give any information regarding the results of the tests, but to my surprise, I was asked to attend the clinic of a prominent neurologist in another hospital for a second opinion on whatever they thought might be wrong with me. As I had not been given any information as to their suspicions, I waited for the appointment date filled with anxiety and fear of the unknown. Two weeks had passed before I was to see the consultant neurologist. He questioned me about my symptoms and asked me to do some body movements for him. Again, to my disbelief, I was told nothing, only that the results of the appointment would be forwarded to my consultant. It was now 6 weeks since I was discharged from hospital and I was awaiting an out-patient appointment from the consultant.
Marie had become withdrawn and quiet. At that time I did not know that Marie had been told by my GP that the consultant was of the opinion that I had Multiple Sclerosis. For weeks she kept it to herself, crying with the worry and isolation she felt. She had great strength and courage, and told me she might be expecting our third child so as to divert me.
With hindsight, I think my GP should not have told Marie that the hospital suspected MS. On reflection, Marie and I should have been told together of the hospital’s suspicions and also the results of the medical tests.
At my first hospital appointment as an outpatient I was called into a small room. There was one doctor and myself in that room. I thought this was strange, because at previous appointments there were always some junior doctors present. My mind began to wander aimlessly. The doctor asked me how I had been feeling over the previous weeks, and I told him that I was anxious to know the diagnosis. He told me straight out that he was almost certain that I had Multiple Sclerosis and proceeded to explain MS to me. I felt alone and numbed. I didn’t remember anything that doctor had told me about MS. Memories of that moment are clear - the doctor’s face, and then nothing. To be honest, when I left the hospital that day I was none the wiser. I took in nothing that the doctor said. Marie and the family were full of disbelief. We had two young children to - how would I be able to provide for my family? Would I be able to work and for how long? I had so many unanswered questions. I did not accept that I had MS. I remember saying to Marie that I would not accept it until the day that I could not walk or work. The medication prescribed made a big improvement to my balance and walking.
At this time I was working in the printing trade as a typesetter and was attending courses in advertising so as to further my ambitions in that area. These dreams had suddenly been taken away. Now I was faced with the worry of telling my employer of my condition. The company works manager questioned me about the amount time that I had been out of work due to hospitalisation and outpatient visits. I told him that I had been diagnosed as having MS. He showed some concern about the work aspect and so I requested to speak with the Managing Director. I explained to him that I had been diagnosed with MS and that there was no one test that could positively prove that I had MS, that it was a clinical diagnosis. His reaction was one of understanding and genuine concern for my well being.
While I was able to continue working I was beginning to feel pressure. It was self-imposed pressure to continue with as normal a life as possible. We had two young boys to look after and educate. Strangely enough though, it kept me going, I often wonder how Marie was able to deal with the unknown. My MS caused problems. I did not find it easy to come to terms with it, and I was in a state of denial. I would often see my father playing with our sons Simon and Brian, the two of them on his knees. This would make me feel angry that I was unable to enjoy the same fun and relationship with my sons as other fathers did. The weight of them on my legs was unbearable. They did not get the attention that I longed to give them. I couldn’t hold them and play with them as other fathers do. We made every effort to carry on as normal with our lives. I had a lot to come to terms with and often it wasn’t easy to understand and accept my limitations. This caused a great strain on our marriage; but we worked hard to understand and confront our problems. During the next few months I gradually came to accept that I had MS. I would do what I could within my limits. However, my physical limits were much less than my expectations!
I began to research MS to find out exactly what its effects were on a person’s quality of life. How quickly did it progress? How debilitating could it become? Was there some chance that I could be as mobile again as I was when we married in 1971? I was to realise that any one specialist could not answer all these questions. My muscles would probably weaken as time passed. My ability to do normal things and the possibility of being in a wheel chair within a few years was real. The protective gel around the nerves and the muscles would start breaking up and there was no cure.
Every one is an individual and different so it is not possible to put time limits on these changes, but I didn’t like what I was reading. It was then that I decided to get on with my life and take each day at a time.
I continued with hospital appointments every six months while the doctors tried to control my condition. The MS had not progressed during the years following the diagnosis, and at one stage I felt that might be in a remission because I felt so good.
In 1978 Marie was expecting our third child. Nineteen weeks into the pregnancy she had a miscarriage, which caused much anxiety and stress.
On March 8 1982, Marie gave birth to our daughter (Anne). This was a new beginning for the family. After the nine months of worry, when I wondered if the drugs I was taking for MS would have any effect on the baby; the birth of a perfect baby was a great relief.
A great feeling of purpose came back into our lives. The two boys were fascinated with Anne. A little sister was a novelty. I had more things to occupy my mind now and I tried to forget MS. I would not sit down and feel sorry for myself. My employers were very understanding during those stressful days, but unfortunately they had to close down and I was made redundant. After looking around for work for a while I soon realised that my condition of health was going against my gaining employment.
Lady Luck was with me when I applied to The Irish Times newspaper for a temporary job as a typesetter. It was during my first interview that I decided that honesty was the best policy. About five minutes into the interview, I produced a medical report given to me by the consultant at the hospital stating that I was very eager to continue in employment and that to do so would be good for me, but I was not to lift anything heavy.
They employed me initially for an eight-week period, but to my surprise and delight asked me stay on a two-weekly basis. I left the Irish Times after a happy 18 months. I could have stayed longer, but my brother and I decided to open our own typesetting company, which would give us long-term security. We borrowed £5,000 and my father and an Aunt gave us £5,000 to get started. With this we bought a small computer, some equipment, and then borrowed enough money to cover the first week’s wages. Between the two of us we worked two ten-hour shifts from the front bedroom of my parents’ house. It was our aim that we would eventually be able to employ one other typesetter and that I could do other work in the company. I was beginning to slow down and I found it very difficult at times.
Within two years we had moved into our own premises and bought our second computer. All was going well, but I was beginning to feel the strain and pressure and anxiety more and more. We made a fair living for ten years but could not keep up with the changing technology in computers that was revolutionising the printing trade. Unfortunately we had to sell the equipment and close the company after ten years in business.
Once again I was unemployed, and I approached another newspaper company for temporary work and got six weeks work from them before they closed down. I was unemployed again, this time for 11 months. On the twelfth month of my third term of unemployment Marie saw an advertisement for a typesetter with a company near where we lived. It was with Marie’s encouragement that I applied for the temporary position (6 weeks). We were sitting in the garden on one of the rare sunny days called our summer, resigned to being long-term unemployed. The next day I was called for an interview and after a second interview, at which I presented the medical report, I was offered the temporary position for 6 weeks. We were delighted that I was going back to work again, but even more delighted when I was offered permanency. I couldn’t believe it, my walk was slow and a tremor was gradually coming into my hands, I had produced my medical record, and I was being offered permanency! I thought this was unbelievable! I liked the prospects of permanent employment, and the prospect of secure employment eased my mind. During the time since I was diagnosed MS, I often wondered whether or not Simon and Brian realised that there was something different about their father. I was not as active with them as perhaps other fathers were. It was important to me that I was involved with their interests as much as possible.
It was late in 1988, three years into my permanent employment that my deteriorating health became obvious. When I was walking on an even surface, it felt as if I was walking down a hill, but in fact it was my legs going from under me. I was becoming unreliable and uneasy with my work. The first hospital I had attended had closed and so I was referred to Beaumont hospital, as this was the new neurological centre in Ireland. I was admitted for assessment in July 1988. My inability to walk a reasonable distance was very difficult to cope with.
I lay in the hospital bed expecting nothing more than a check-up and a change of medication. Little did I know that was my world was to be turned up side down once again. The consultant neurologist was with me for no more than a few minutes, looked at the notes his registrar had prepared, then with an air of authority said ‘‘you have Parkinson’s disease’’ and walked away from my bed.
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