Tip 1 of 10: Accept PD (But Not All Of Its Consequences)

This article shows you how to accept aspects of PD in order to help you make big steps towards accepting the condition as a whole, whether you’re a patient, a partner or a caregiver.

GOOD ADVICE (THAT WILL DO YOU NO GOOD)
Do you get angry and frustrated too whenever you get ‘good advice’? It is so easy for someone healthy to say things like:
• “You will just have to accept it”
• “It is the way it is”
• “Just get used to it!”
• “You have to come to peace with it”

They probably mean very well but it doesn’t help at all. And of course you get it that frustrations over an affliction won’t help you, so you want to accept, let go, be at peace. But how on earth do you do a thing like accepting Parkinson’s?

WHAT IS SO HARD ABOUT ‘ACCEPTING’?
‘Parkinson’s’ is a container, with a world of feelings, thoughts and possible interpretations, unique to everyone involved. It is (for now) an incurable condition; you know what probable and possible symptoms and effects are, but you don’t know how whether these will occur in your case and how you will react. You have loads of questions, like:
• At what speed will the condition progress?
• Which symptoms will occur? To what extent?
• What will that mean in terms of work, relationships, friendships, hobbies?
• Can I keep on living in this home?
• Will I be able to handle it? Can I still be joyful? And happy?
It can be utterly overwhelming. And then they tell you to ‘just accept it’?

‘ACCEPTANCE': WHAT EXACTLY DOES IT MEAN?
The heart of acceptance for many people is in chunking down the problem into smaller pieces and in focusing on these pieces one at a time. In this article a couple of important pieces are dealt with. The main thing for each of those is to distinguish between:
• Things within and outside of you influence
• Facts and feelings
• The condition and its consequences

DISTINGUISH BETWEEN THINGS WITHIN AND OUTSIDE OF YOUR INFLUENCE
A wellknown model that shows the difference comes from management guru Stephen Covey. He distinguishes between three areas:

1. The Circle of Influence
Within the innermost circle lies everything you can decide completely independently: the colour of the Socks you put on this morning, whether you ate fruit or eggs and bacon for breakfast, what book you are reading etc.
2. The Circle of Concern
In this wider circle is evreything you have some say over, but can’t decide alone: where you and your family will go on vacation, what to watch on television in company, what the room temperature should be, which presidential candidate will win the election etc.
3. The Space Outside the Circles
Outside both circles is the vast territory of everything you have no control over whatsoever: what the weather will be like, whether a volcano will erupt, what the government of Irak will do next etc.

There are two rules with this model:
1. Keep yourself occupied only with things inside the circles.
2. Don’t get mad, sad or hopeless about anything that is not under your control.

Now there’s a problem with rule 2, because NOT doing something (for instance: Don’t think about a blue elephant. See?) is really hard, some say: impossible. But you’re in luck: sticking to rule 1 and really focusing hard on finding solutions for problems that are at least partly under your control keeps you so busy you won’t be able to think of anything else!

In the context of Parkinson’s:
1. Influence: healthy eating and drinking habits, exercise, taking medication, learn more about the condiction etc.
2. Concern: relationships (partner / family / friends), work, getting additional treatment etc.
3. No control: the fact that PD exists and that someone has it.

So it is mainly about FOCUS. What do you pay attention to and what not?

DISTINGUISH BETWEEN FACTS AND FEELING
Another important difference to make is facts and feelings about those facts.
For some people the anger about ‘being afflicted’ by a disease inherent to having the condition: “I got Parkinson’s, that sucks and it’s completely unfair, SO I’m really mad about that!”
Having Parkinson’s is a fact, the emotion is caused by reasoning. (in the above sentence: ‘that sucks and it’s completely unfair, SO …’).

From now on, wonder where a negative feeling comes from:
• What situation or experience leads to the negative emotion?
• What exactly is the emotion? Find the name tag that has the most meaning for you: is it anger, frustration, indignation, fear, sadness or something else?
• What is your reasoning that leads to that specific emotion? What thoughts lead from fact to bad feeling?
• Look at it from a distance (as if it concerns someone else) and realize the facts are just the facts.
• Now be creative: What other ways of reasoning are possible here?
• Choose the reasoning that is most helpful to you!

DISTINGUISH BETWEEN THE CONDITION AND ITS CONSEQUENCES
What I find with many coaching clients is that they get mad at their disease while their anger and frustration mostly has to do with consequences of the condition.

A case in point: at a presentation I gave for a Parkinson’s Cafe a man told me: “They’ve taken my driver’s license from me! I’m so mad about that!”
I asked him what the license meant to him. “That stupid piece of paper is my freedom!” he said. So he’d lost a piece of paper and it felt as if he was now made a prisoner in his own home!
I then asked him to come up with three ways of experiencing freedom without the driver’s license. He quickly came up with public transportation, asking his brother to drive him now and then and organized holidays. Although these were really obvious alternatives, it immediately got him some peace of mind and … acceptance of his situation! The anger had decreased considerably.

What this man did at first, was:
• Make the problem bigger than it actually is (by seeing the driver’s license as ‘freedom’)
• Focus on the problem (which he could not solve) instead of a solution (which caused the anger)
• And implicitly blame some external person or thing for his loss (“THEY’ve taken my driver’s license”)
Through a couple of simple answers he was able to think more constructive thoughts.

Do you want to try this yourself?
1. Ask yoursel what you are angry or frustrated about.
2. Decide what exactly the negative consequence is (What have you ‘lost’ that you may be able to get back in another way? Freedom? Self respect connected to work? The joy of creativity? Your way of contributing to society?).
3. Think of three alternative ways of getting that result. And pick the one you like best!

Use this to your benefit and health!
And please comment below!

Warmest regards,
Koen Lucas, Health Coach

PS: This is the first blog on Tip 1 of 10 about Coping with PD.
Kees & Koen are posting a total of 20 weekly articles, one with a description of each of the 10 tips (by Koen) and one with Kees’s experiences with that same topic.
Read the initial article with all 10 tips here.