How to be me?

Part 1

The Introduction

This is the introduction, the first of three blog posts on” How to be me?” The second will contain my story and the third my conclusions.

One of the biggest fears of having Parkinson’s is losing yourself. The thought that Parkinson’s can change you has crossed my mind and it’s a scary thought. Parkinson’s makes changes in the brain, the medications act on the brain.

It is perhaps unreasonable for us or those close to us to expect that we can somehow refuse these changes in a way that we can’t with physical symptoms. I believe however that we can, like physical symptoms, at least minimise the impact and the fear by being realistic and understanding some of the things that happen to us.

As well as physical changes, there are what we call non- motor symptoms and these are non- movement related symptoms. This includes depression which affects mood and can change behaviour. Another possible effect is anxiety.  Whilst loss of confidence can accompany physical symptoms too, non- motor symptoms can exacerbate this in some cases, in turn making you less decisive and outgoing.  Apathy affects the motivation to get on with or initiate tasks. The final non -motor I want to mention is a decline for some in cognitive function, I’m talking short term memory, inability to call up words or names, plan or even multi task.

If you combine these issues with medication side effects such as impulsive behaviour, hallucinations or lack of sleep. The combination must have an impact.

Personality and behaviour are related but have different meanings. Behaviour is what we do but personality is who we are. There are many definitions of personality some definitions include habitual behaviours. It is important to consider not only what we do but why we do it. Parkinson’s is a complex condition so there are many factors that can impact. If we can recognise the factors we can see past Parkinson’s to the person behind.

In part 2 I will use my own story to illustrate the effects these factors can have.


Jon Best


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I am 47 and have Parkinson's and a full life with a fulltime job and a family.I live in the UK

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