I became aware that this week is Parkinson’s Awareness Week on Monday, when I was watching the BBC One’s Breakfast show. The programme’s story on Parkinson’s featured a poor young man in his twenties who had been struck down by the disease.
Much of that programme’s slot on Parkinson’s was spent in demonstrating that the general public has no real understanding of this condition. It gave examples of people who assumed an individual with Parkinson’s was drunk, rather than ill.
The programme highlighted how Parkinson’s sufferers become aware of how other people were irritated by their condition, such as when they were struggling in shops to find the coins to pay for their goods. Examples were also given of people finding it amusing that people suffering from this disease often had tremors.
All these examples highlighted why many sufferers might prefer the safety of their own home, rather than going out in public. Consequently, their lives have become increasingly limited, because it is easier to live life that way – by staying at home.
My condition was diagnosed in November 2012. It was described then as “mild, early onset”. At the time I had been mainly unaware of any major limitations in my day-to-day activities. So, how have I progressed since then?
Once I had been diagnosed, I recognised a general feeling of unsteadiness when in a crowded room or when shopping. I did not have a tremor, but I was slightly slower in matters involving my fine motor skills, for example I found doing up buttons became harder.
It is a degenerative disease – and I suppose that I have degenerated.
I am certainly slower when trying to get dressed in the morning. Consequently, it adds on quite some time! The other morning I was talking to an accountant friend on the telephone. She told me that her mother suffered from this illness and also found it difficult to get dressed in the morning. So difficult in fact, that she preferred to stay in her dressing gown all morning. I smiled to myself because it was nearly 11am and I had put off getting dressed as well!
I have more difficulty with coins when I am out shopping. I suppose I should arrange my coins, so I anticipate how much will be needed before I get to the supermarket checkout. However, I was never made to be organised, and now it is too late to change!
Unless I concentrate very hard, my default position when walking is that I shuffle. I must be much slower than before because I am regularly passed by little old ladies who are limping badly and carrying heavy shopping.
The BBC programme found that the perception of the public and the personal impact of the disease led them into depression. I am glad to say that this is not the case with me, nor do I get irritated by the condition. I have resolutely failed to read about Parkinson’s disease – I prefer to deal with problems when they arrive.
I think the best decision I have made over the last six months is to have a personal trainer. He and I meet twice a week. For the first three months, his efforts were very gentle, getting me to stretch and helping me improve my balance.
Slowly, I have picked up the pace. I now feel as if I have had a real workout at the end of each hour’s session. There is even some running involved, which I find quite astonishing. My balance has improved considerably, and now I rarely suffer from that feeling of insecurity when in a crowd.
To my fellow sufferers, where possible, I strongly recommend physical exercise under qualified supervision. I recognise though that I am very lucky to have, and to be able to afford such a skilled trainer.
So far, I have been lucky. And I intend to do everything I can to keep myself lucky for as long as possible.