Living with Parkinson's

Whilst it is common knowledge that Michael J Fox and Mohammed Ali have Parkinson’s disease, it is surprising how little people know about it.

In this article I hope to give some idea of how this condition has affected me. If you are interested in the story of how I became diagnosed read the hub page ‘Coping with Parkinson’s’.

I was diagnosed with Parkinson’s about three years ago, and have taken all that time coming to terms with it – and still some way to go. I’ve discovered that there has been a great deal to learn about day to day living.

The problem with being an adult is that we think we know it all. Let’s face it - we all have been to school and had life experience. Why should we have to learn from somebody else? However in reality there is always a need to learn new things about doing life.

One of the difficulties of living with Parkinson’s is learning to come to terms with the limitations. No one person with Parkinson’s has the same symptoms. It tends to be associated with shaking, but there can be many more issues. For me, although I had an internal vibration (without a visible tremor), stiffness and slow movements were the initial problems. Getting through the bathroom became difficult, and I struggled with my handwriting. Also climbing the stairs and low energy levels caused me problems. Although I improved considerably when I went on the medication the issues did not go away.

I became increasingly aware that I was developing what they called the ‘Parkinson’s gait’ or walk. Tensing your arm and having an odd walk can make you look a bit strange but I was probably more aware of it than others. I started to become self conscious about this, and it was no help when I read about people with Parkinson’s being picked up by police in 1960’s Canada because they thought they were drunk! It was partly because of these sorts of misunderstandings that the Parkinson’s society of Canada was formed.

I eventually became aware that I needed to adapt to my changing situation, but this requires a strong self esteem. I could no longer base my self worth on what I do or even what I want to achieve, but simply on who I am. Often in life we are our own worst critics and we are very quick to put ourselves down. Having been brought up in a Christian context I was well aware of my shortcomings. However there is also something special and sacred about life, and Christians often forget that the bible also teaches that we are made in the image of God.

Having read quite widely on issues of self help, I began a journey of learning to appreciate myself and what I’ve got to offer. In order to live with any disability it is essential to accept your limitations. It is no use beating yourself up for what you can’t do!

Conversely, we need to appreciate what we do have. I am sure that most of us when we listen to the news feel despondent and think the world is a bad place. However the truth is that there is much that we can enjoy. The film “Love Actually” makes the point that love is all around. People love their partners, work for charity, do many good things, and care for their children. The world is also a place of beauty. Learn to savour that meal, enjoy that game of football, enjoy a concert and appreciate the world around.

I may have Parkinson’s and certain limitations but I can still get about, enjoy life, write and contribute to the world around. A positive mindset is helpful in any life situation and particularly so when we have to face the difficulties imposed by disability. I appreciate that this is often easier said than done, but we can choose to make our lives easier or harder.

For me it meant looking for ways to make life easier. When you are used to being healthy you tend to have an independent outlook. Whilst this should be maintained as far as possible you have to learn that it is not necessarily a weakness to receive help from somebody else.

For some people it is harder to accept help than to give it. I sometimes struggle with the coordination issues of cutting a piece of meat; having a sharp knife does make it easier, but I sometimes still need assistance. Whilst it may be embarrassing at first there is a time to let somebody do it for you. I discovered that this can be a sign of strength and not weakness.  

It seems to me that in the art of learning to live with something like Parkinson’s you should firstly look for ways of being independent as far as possible and this usually involves adapting your environment. I was amazed at how helpful a banister rail was on both sides of the stairs. I remember coming down stairs in the morning and nearly falling down. Being able to hold on to a banister on both sides of the stairs made things much easier. Sometimes very simple adaptations can make a huge difference, and you may need to think outside of the box to come up with ways to improve life. The occupational therapist is a specialist in this – mine was very helpful, and many adaptations come free of charge.

One rather wet day I was out for a walk. The general advice for people with Parkinson’s is that if you don’t use it you loose it. Therefore you need to use your muscles as much as possible. I was standing at a corner where it was difficult to see if a car was coming. I stepped out into the road with considerable gusto but suddenly found myself tripping over the pavement. I cracked my head on a fence and discovered to my horror that my head was covered in blood.

Have you ever wondered what they think in hospital? I was sat for an hour and a half in a busy emergency department and then examined only to be told that I had high blood pressure. Who wouldn’t in the circumstances??

We all have a fear of growing old; and the idea of looking older than our years fills us with dread. My wife and others said that I should have a stick but somehow the idea of looking old filled me with dread. I remember questioning my own logic. When we are young we have a self image of being a young person - but is it really that bad to be older? In eastern cultures they admire the wisdom and experience of age. In any case does having a stick really equate with age? If it would be useful I would be the person missing out if I didn’t have one!

In the end Ableworld made it easy. I was able to buy a stick that folded up and could put in a bag. This meant I could use it when I needed, and hide it away when I wanted to look cool. Perhaps I have still some way to go in coming to terms with the dreaded walking stick!

When I was first diagnosed I remember my sister-in-law saying that you need to make the most of life while you can. Also the Parkinson’s physiotherapist said that you need to keep yourself going as long as possible.

I was quite shocked to discover that in some ways I preferred to be at home. Why sleep in a poky hotel when you can live in the comfort of your own home? Appliances such as a raised toilet seat and an extra rail in the shower make things much easier at home, and having to get a ‘disabled’ room is limiting (they don’t exist everywhere), and again, it’s a label you don’t really want to own.

The question I began to pose myself was - when I am sitting in my rocking chair in later life what things would I regret not having done while I had the opportunity? It was while I was thinking upon these lines that I saw an advert for films that you ‘have to view while you are still alive’. I smiled to myself because I realised that I could happily do without them all. However I decided to set myself other targets – things I really wanted to do. I have discovered that once I make the effort to step over the threshold, I enjoy being out - and in particular I enjoy savouring the delights of nature.

Coping with Parkinson’s is largely a matter of making the most of what you have got while you can. Also it is good to develop the art of lateral thinking and trying to make life easier. I am sure that if you dropped us on a desert island we would survive as well as the fit and healthy. We have learnt to adapt and surely that is one of the keys for survival in a changing world.