Deciding to Accept Parkinson’s

I am a Writer for ‘The Parkinson’s Experience’ global community.

“The more I expect, the more unhappy I am going to be.  The more I accept, the more serene I am.” – Michael J. Fox.

One of the most common difficulties that I see, in other people with Parkinson’s, is frustration.  Indeed, I see this in myself at times, too.  Frustration that comes from having expectations we cannot fulfil.  We may expect to be able to complete the most simple of tasks. We may expect to have the energy to go from one task straight on to the next.  We may expect to be able to do the basics of our functions; talking, conversing, chatting, walking, eating, getting dressed…the list is endless.  The frustration occurs when we are unable to achieve something in line with our expectations.

When I respond to people, who ask me how can they possibly live with such constant frustrations, I tell them that they must change their focus from being frustrated at the task they could not achieve.  I inform them that their expectations that they can complete the task come from their former self.  Before Parkinson’s took hold, they were more able bodied and able minded.  So, their expectations ‘fitted’ with who they were and what they used to be capable of.  Parkinson’s has since developed and so now those usual expectations no longer ‘fit’ who and how they are today.

Here is the good news:

There is a choice.  The choice is between continuing to hold on to long held expectations, which ‘fitted’ the person before Parkinson’s manifested, or to change/update those expectations to ‘fit’ what the person is capable of today, with Parkinson’s.

Once we understand our choices and what they mean, we merely have to decide which choice we will choose.

This part is important.  You will note I have emphasised the word ‘decide’, in italics. You see, we may know we have choices and we may choose between them, but we need to first reinforce what we choose by making an informed decision about what the choice means for us; ie. what are the benefits and consequences.  If we just choose, without having first explored what the choices mean, then we may choose something that does not match the important life decisions we truly need to make.

Here is what the person has been doing:

  • The person has expectations that they can perform ordinary tasks.
  • The expectations were developed when the person was healthy and able.
  • The person has since developed Parkinson’s.
  • Parkinson’s has caused the person ill health and disability/reduced ability.
  • The person wishes/needs to carry out their tasks, but has difficulty/cannot.
  • The person becomes distressed, upset and frustrated.
  • This is because they now feel that they fail at their expectations.
  • The person becomes increasingly unhappy, depressed and loses hopefulness.

Here is what the person could decide to do instead:

  • The person has expectations that they can perform ordinary tasks.
  • The expectations were developed when the person was healthy and able.
  • The person has since developed Parkinson’s.
  • Parkinson’s has caused the person ill health and disability/reduced ability.
  • The person re-evaluates what they are able to do and how best to do it.
  • The person replaces their old expectations with new expectations based upon their re-evaluation of their ability as a person with Parkinson’s.  This means they recognise that Parkinson’s has changed their ability.  This is called ‘acceptance‘.
  • The person wishes/needs to carry out their tasks, but has difficulty/cannot.
  • The person adapts the task/how they go about their task or they ask for help.
  • Then a) The task has been changed and then completed or b) The person has changed how they approach the task and then the task is completed or c) Somebody else has helped with the task and the task is completed.
  • The person feels satisfied that, although things have to be different because they are a person with Parkinson’s, they can now meet their new expectations and feel satisfied and fulfilled.

From here, life will start to feel better.  The frustrations will be reduced and replaced by a sense of accomplishment.

Parkinson’s does cause continuing decline; to varying degrees depending on the individual.  Each person with Parkinson’s must go through the above process of re-evaluation, whenever they experience a significant decline in their ability.  This is not what we want to have to do, but if we accept the benefits of doing this, we can be much more content as we go on in life.  This is a way to remain empowered to either continue completing our tasks or empowered to co-ordinate that they are somehow completed.

(c) Dean Parsons. February 2018.

 

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