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Coping with Parkinsons
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Living with Parkinson's - How do you cope?
- Living with Parkinson's
Whilst it is common knowledge that Michael J Fox and Mohammed Ali have Parkinsons disease, it is surprising how little people know about it. In this article I hope to give some idea of how this...
When we are young, most of us who are fit and healthy have the view that we are in control of life. It never seems to cross our minds that one day we may struggle with issues of mobility and have our lifestyle hindered in some way.
My parents were keen cyclists and even as a young child I was encouraged to be active. I spent the first years of my life in Cheshire and one of my earliest childhood memories was getting a tricycle for Christmas. What might surprise you is that I opened the present sometime in September. The reason for this rather unusual occurrence was that the whole family had been brought down with the Asian flu, a rather deadly virus that was laying the nation low at this time. I had not long since learnt to walk and had been doing very well, but after having been knocked out by the dreaded flu virus I was struggling to get the strength back into my muscles.
The early Christmas present was the motivation needed. From this point on I never looked back. I can remember the exhilaration and pride I took in my achievement of being able to peddle up and down the path in my back garden for the first time.
My childhood and teenage years were active ones. My parents and I would ride up to 80 miles in a day on day trips out, visiting the nooks and crannies of Cheshire, as we never owned a car.
I went to 6th form college and then on to do teacher training. As well as being active I must have been responsible for a whole forest of trees being felled to produce the paper on which I took notes and wrote essays.
However it is not just our achievements that typify our youth, but also the arrogance that makes us think that the world is ours and the way ahead is endless. I am sure that most of us would agree that our childhood seems like an eternity, and consequently at the age of 18 it appears that our lives will go on forever. Also these early years have been characterised by growth and development, we have seen ourselves develop new skills. We may gain an impressive array of awards and certificates perhaps for academic achievement, sporting prowess and a clutch of other accomplishments. We therefore perceive life as a time of improving strength and developments. We have not yet experienced life as a time of shrinking abilities and the decay that sets in as we journey through life.
What about adolescence and waking up to the new experiences of sexual attraction? The 60’s was a time of increasing awareness, and the trends and fashions of the day created new temptations that previous generations had not faced. The feeling of being attracted to and attractive to sexual partners, contributes to the urban myth that we are in some way immortal. Old age or ill health is something that could never happen to us!
For me this urban myth was blown out of the water when I reached the tender age of forty. It was not that I felt any older but people suddenly started acting as though I was. One youngster actually said to me “It’s different at your time in life…” I think I must have given him a very filthy look as he suddenly started trying to dig himself out of the hole!
However, it was during my late 40’s that I found that life really was beginning to change. Often in the afternoon whilst working in the office, I began to struggle with my writing. I had never had brilliant coordination - playing the violin was not one of my skills - but I suddenly found that I was writing more slowly and the effort caused my arm to become tense and the pain was excruciating.
I remember pausing one afternoon and thinking “What on earth is going on?” I was fidgety and found it hard to concentrate on my work. By this stage I felt mystified at what was happening to me.
The afternoon agony stretched on and eventually I decided that I needed to see a doctor. I also had a problem with walking and had developed muscle pains from going upstairs. Going to bed at night became more like an Everest expedition. I could have done with a bar of Kendal mint cake half way up!
The doctor was certainly sympathetic, but sent me on an endless tour of x-rays, orthopaedic specialists and physiotherapists. This seemed to bear little fruit and eventually I was diagnosed with Parkinson’s.
What is Parkinson’s disease? One of the things that I have discovered in talking to many people is the only a few really understand what Parkinson’s disease is like. It has been described as a degenerative neurological disorder and is often associated with slowness of movement, tremors or internal vibrations, and possibly poor posture.
It certainly seemed to fit in with what I was experiencing as it was now taking me hours to get ready in the morning. I had taken voluntary redundancy, finding work so difficult and painful, and I even found it increasingly difficult getting out to church on Sunday. The anxiety of not knowing what was wrong started to lead to mild depression, which in itself can also be a feature of Parkinson’s.
Eventually the doctor arranged for me to see a neurologist who instantly diagnosed Parkinson’s. Maybe you would expect me to have been devastated but actually I felt relieved - the implication of the diagnosis was clouded by the sense of relief that at last I knew what was wrong. Also as I started on the medication I began to speed up and the issues improved. However the implications sank in at a later stage when things started to move onto the next stage.
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Once again I began to notice that I was starting to get a little slower in the morning. It was taking me longer to get through the bathroom. Also I was once more beginning to experience aches and pains in my muscles. I looked on the web sites and many of them said that although it was not commonly known, many people with Parkinson’s suffered in this way.
I also began to notice that the Parkinson’s tablets would wear off towards the end of the morning and also late afternoon. I was expecting to hear from the Parkinson’s nurse, but somehow I was left out of the system. When we phoned up we were given an appointment in two months’ time – which was postponed for another few weeks. Cutting a long story short, when eventually I got to see the Parkinson’s nurse she gave me slow release ropinerole, and this turned out to be a big improvement.
However the experience of not having the appropriate medication meant that I began to realise the full implications and what it meant to have Parkinson’s. I noticed that I would be embarrassed when going into public, aware of my slowness, and the rigidity of my features. Also it was starting to limit my ability to get around and do the things that I wanted to do.
I have often learnt the hard way that life is not a utopian dream and what really counts is, not the actual circumstances, but how we react in a given situation. We can either give up on life or make the most of it.
As a teenager I was fascinated by the life and music of Beethoven - not a common interest for someone growing up in the 60s. However I was impressed with his struggle to come to terms with his disability of hearing. His battles against fate are immortalised in his 5th symphony, and for a perfectionist musician it must have been a formidable cross to bear. However in later music Beethoven seems to have come to terms with his fate and the music shows a perfection which is amazing considering his deafness.
We may not all be talented like Beethoven, but we can all make the most of our lives. Recently I was reading about the life and work of a psychologist called Victor Frankle. He was a Jew in Nazi Germany and was interned in a concentration camp with the rest of his family. He was the only one to survive. In addition, all his previous writing on psychology – his life’s work - had been destroyed. Despair would have been a natural response but he decided to turn his experience to advantage. He used this dire situation to observe people’s methods of dealing with their circumstances in the concentration camp.
Franckle perceived that people who were positive survived better, even if it was only a simple thing like noting a flower coming through a crack in the pavement. Also he noted that people who had a purpose often survived better. It was not that people had to believe in a lofty ideal but a purpose could be as simple as being determined to survive in order to see the family again.
Thankfully most of us will not have to live through pressures as extreme as these, but whatever our life experience it is essential to discover purpose and meaning.
In coping with the growing limitations imposed by Parkinson’s disease I was encouraged to dig deeper. I found it very hard to lay to rest some of my goals and aspirations; but there is a sense that we have to change and adapt as we journey through life. It slowly began to dawn on me that life is not so much about what we do but more about how we respond in the changing circumstances of life.
Life changes are not always easy to accept, but we are still the same person whatever our situation. The Chinese have a story that demonstrates that it is best to be like the bamboo and bend with the wind, rather than the solid oak tree that eventually breaks under the pressure.
Being made redundant has given me the time to devote to writing which is something I enjoy doing. Even if it is only for my own pleasure it is an opportunity to express my creativity.
However it is not just what we do that gives our lives meaning and purpose, but who we are. The issue of happiness has been a subject of research in recent time and it has been discovered that the happiest people are generally those that look outwards. Think about what you can do for others and be generous. Most of us can muster a smile, make a cup of tea or even simply appreciate another person. Even little things make the world a better place. Sharing happiness can make a good life’s purpose.
When faced with issues of disability we can either focus on what we haven’t got or we can take delight in what we have. Admittedly this is easier when the disabilities are moderate, but at the end of the day we are the only ones who suffer when we don’t.
There are many things that we take for granted every day - family, home, food and the glimpses of nature that make us feel alive. Some people are turned on by the sun and countryside or maybe a beautifully shaped tree at the end of the field. Others might be into football, cars or racing. Discover what gives you passion and savour it like you would a gourmet meal.
Having to spend quite some time at home I occasionally look out of the window to observe the birds that come into the garden. This is something I have learnt to enjoy.
I think it would be unrealistic to say that any type of disability is a good thing, but it can make us aware of the sufferings of others. We may not experience exactly what they feel but we can begin to understand the problems other people face.
We have all come across people with very little empathy, who rarely look beyond the end of their noses. Maybe we have heard preachers, politicians or doctors say things that reflect the fact that they only view life from the point of view of a healthy person. Suffering can be a great teacher and empathy which it empowers is a feature of personal growth.
So, difficult as I find life with Parkinson’s disease, I hope I have the goodwill to use my experience to have a little more patience with others, whatever their situations. At the end of the day, the best we can make of life is to exploit every situation for good. And if I have helped others to make a bit more of their life, then mine is the sweeter for that.