How to be me? (Part 3)

Part 3

My Conclusions

I ended part 2 by saying my love for my family, my sense of humour, my kindness all remain. I am still me. 

My personality may change as my life moves on. It is important to see past the Parkinson’s to the person as perspective can be as important as reality. I have spoken to many people with Parkinson’s who struggle with apathy. It is hard to understand if this hasn’t affected you, but the key word here is struggle. I struggle with apathy because I don’t accept it. It can affect my behaviour but it doesn’t define me. It is part of my life and part of Parkinson’s but it is not part of my personality.

My behaviour is influenced by external and internal factors. I can behave differently to cope with limitations including my Parkinson’s. It is important that we with Parkinson’s do not blame ourselves by integrating effects we can’t control into our personality. If we can think through the position we are in we can remind ourselves who we are. It will easier for others to see us rather than Parkinson’s if we can see it ourselves.

The future may offer further changes to my personality but I believe the core of my personality will continue to survive and evolve, If we recognise the factors affecting us there will be some we can affect.

We can’t freeze our personalities in their pre-diagnosis state but we can look to understand where we have choices because there is much that is not preordained.

Thank you for reading. I welcome comments so if you have any thoughts please leave them here.

Best wishes





How to be me (part 2)


Part 2

My story


I was diagnosed 11 years ago and have had some of the issues listed in the introduction.  Parkinson’s is a complex condition and we don’t all experience all the symptoms.

Personality is not a fixed situation we do change as we experience life and changes may happen anyway. My father as diagnosed with cancer and at the time I felt he had changed. In his younger life he had seen terminal cancer in his family and seen loved ones suffer. His diagnosis brought his experiences of cancer to the surface and naturally he reacted to them. This is an extreme example but one that demonstrates these sort of changes are not exclusive to Parkinson’s. 

Anyway back to me and this will be from my perspective. When I was diagnosed I felt I was hurting my family this was not a conscious thought but I felt somehow at fault. This changed my goals a little, with me wanting to prepare my family for a time where I could do less for them. I don’t see this as personality change as it arose from my love for my family and any other threat to my future could have produced the same impact. At odds with preparing them to manage without me I wanted to do things for them while I could. 

Role change also had an impact. Parkinson’s can change your role but it is more complex. It’s not only your role but your perspective of it. I will go farther as others perspective is impacted too. In the period before my marriage broke up my step daughter was diagnosed with an autoimmune condition that is as serious as my Parkinson’s . It must have seemed an incredible weight on my wife shoulders facing a future with two close family members with health conditions. It was a couple of months later that I felt perceptions of me had changed. For example my driving was an issue. I could accept it changed but was horrified when it was suggested that my different opinion on my safety was reflecting a lack of care for our children’s safety. My driving behaviour was different more less confidant but my care for our children had not changed. 

The biggest personality/behaviour change came after my marital separation. Emotionally I withdrew. I became less reliable at work as the apathy set in. I suffered compulsive behaviours. Some of these issues I would have had without Parkinson’s. Some were worse because of it. The compulsive behaviours were not complete changes but I was not capable of applying the same level of control to behaviours I was prone to.

Again, perception played a part. Smaller factors like my quieter voice, not smiling as much, not talking as much whilst driving the car suggests I was less engaged but actually they were all physical symptoms. Tiredness was the worst physical symptom robbing me of the ability to respond to the situations with any meaningful determination.

I got through that and now after changes in my medication things are different. I’ve changed again and different to the person I was before Parkinson’s but most of the important things are the same. These include my love for my family, my sense of humour, my kindness. I am still me. 

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