Publication date: 15th December 2008 Last updated: December 2012
Review date: December 2014
Many people would tell you that their idea of someone with Parkinson’s disease is of someone bent over, shuffling, with shaking hands with very slow barely audible speech. We interviewed over 40 people with Parkinson’s disease from all over the UK, young and old, some having received their diagnosis as long as twenty years ago others more recently, some in the last couple of years. Some developed the illness at a young age, others in their mid fifties and later. Some were badly affected while others had deteriorated very little since the original diagnosis. But what was striking was that except in a very few cases the medication was working for them most of the time. And when it was working, many of these ‘sufferers’ might not actually be noticed as having any disorder by anyone not familiar with the disease. This is not to say that there is any medication which can cure Parkinson’s disease. Most people were on a cocktail of different drugs, each with their own advantages and disadvantages in order to control their symptoms.
People with Parkinson’s are sometimes desperate for others to understand what it is like to be them. We hope that this website will be able to fulfil this wish.