Is There A "Parkinson's Personality"?

This is an excerpt from Episode 2 of my podcast with Andy, a person with Parkinson’s [the transcript is below the introduction to the subject].

I have also embedded the YouTube video of the full episode below too.

In this extract part, Andy asks

“Is there such a thing as a Parkinson's personality, do people with Parkinson's have shared character traits?”

My own experiences, as well as studies that looked at that, indicate there are indeed very common overlapping traits in folks who end up with a Parkinson’s diagnosis. While of course there are always exceptions to the rule, as an over-arching generalization, descriptions like “industrious”, “perfectionist”, “high standards about things”, “hard working”, “doing the very best” are a good fit for many with a Parkinson’s diagnosis.

While these traits can be positive, as we discuss in the full episode, they can have negative consequences over a lifetime when they become sources of self-stressing.

Andy made this comment:

“Definitely, and the whole idea of a Parkinson's personality is fascinating. What I found when I did the course [the Overcome Parkinson’s course] was that I had so much in common with the other participants. I was really, really surprised. And it was really, really excellent to have this in common to have this shared experience, these shared character trait. I really felt that we got each other. We really understood each other. It was brilliant.”

In the book “When The Body Says No”, Dr Gabor Mate also discusses how other chronic conditions also have their own common traits, with each condition (ALS, MS) having its own different set of specific traits. I have also observed this.

However, the words “personality” and “traits” here are perhaps a little too strong, as this gives the impression that these are innate, set in stone, and there is nothing you can do. Through therapy and personal development, it is actually possible to soften and change these personal traits and work towards becoming a calmer, relaxed person. This is the natural way to reduce symptoms.

A comment from Andy about his participation in the Overcome Parkinson’s Course

“Yeah, it's changed me massively. I'm completely different. I'm so pleased that I've changed because I've changed for the better.

• I feel so much more positive.

• I feel so much more excited about the future.

Whereas beforehand, I just felt that my future was very, very bleak. I don't feel that anymore. The course has changed that for me. So I'm so grateful to it That gives you an element of control over your symptoms as well, because you can choose things that make you happy, that you enjoy., that make you relaxed, rather than choosing things that make you stressed.”

I have made a “personality” test based on “stress types”, called the Biological Stress Test. The test helps you determine which type you are based on how you deal with stress. It tells you the strengths and weaknesses of your type, susceptibility to chronic symptoms, and action steps you can take.

Transcript

Andy: Is there such a thing as a Parkinson's personality? Do people with Parkinson's have shared character traits?

Lilian: In the 1970s, they always made studies of whether there was a connection between a diagnosis and personality. So for all the bigger illnesses, you can find these studies that come to a conclusion.

So it's scientifically proved that there is a Parkinson personality and it is actually leaning into what we have been talking about, that you are industrious, you are a perfectionist, you have high standards about things, and in the bigger picture, a hard working type that wants to do the best you can.

Again, that's how most people have earned their money in their careers. The problem is if you stress yourself out, and maybe you have built upon some childhood trauma that made you a little more aware of other people, and you compare yourself to others. So you're upping your standards. So you become a little more perfectionist and maybe obsessive, as you were talking about.

Now we have a culture where doctors and scientists put people into boxes, dependent on their symptoms. That is, you will get these more stressed types with tremor, freeze, and stiffness, and they put them in a box and label it Parkinson's. They get this connection because it's people who push themselves more than other people.

Of course, you can be an outlier in this group, and that's where the doctors cannot really figure it out. But often they don't ask you a question about how your life was, or have you've been in a stressful situation? I can ask you that question. Is there any on your journey to the Parkinson's diagnosis that has asked you questions about childhood, job life, or spouse?

So, I mean, everybody knows that body and mind are connected. It's like, “yeah, you get butterflies in your stomach if you are nervous.” So do they ask about your symptoms?

Andy: They ask about your symptoms. They treat it very much as a medical condition. It's sort of like the mind and body are separate. So this is just a medical condition. It's like an illness. So you need drugs to treat it.

Lilian: It's a little like a car. Something is broken in the car, and that needs another operation or a pill that can solve whatever it is. So they should ask a little, “How was your life?”, “How was your childhood?,” “Have you been in accidents during your life?”, “How was your job life?”, “How is your life with your spouse?”, “Does this person beat you up, or what's going on?”

Andy: I wish they'd have asked me these questions. It would have been so much better had they asked me these questions, but they didn't.

Lilian: So you would have a story to tell where some stress came up.

Andy: Definitely, and the whole idea of a Parkinson's personality is fascinating. What I found when I did the course was that I had so much in common with the other participants. I was really, really surprised. And it was really, really excellent to have this in common, to have this shared experience, these shared character traits. I really felt that we got each other. We really understood each other. It was brilliant.

Lilian: So what you have in common was that this way of going through life with the high standards and push and pressure. I think you can say that people with Parkinson's in general have this push and pressure in different areas, or they've been in accidents, or they have a really rough childhood.

So, next time, I've thought about us talking about who is a good fit for the Overcome course and digging a little into what the change is from before or after the course, Why this change is needed, and who succeeds with implementing these things and what you say goodbye to, and what you say hello to in this, can we call it a transformation?

Andy: Yeah, it's changed me massively. I'm completely different. I'm so pleased that I've changed because I've changed for the better. I feel so much more positive. I feel so much more excited about the future. Whereas beforehand, I just felt that my future was very, very bleak. I don't feel that anymore. The course has changed that for me. So I'm so grateful to it.

Lilian: I can hear now, you start to be able to pinpoint your stressors, where before it was a blur.

Andy: Yeah. It was just a general feeling of being stressed. There was no… I couldn't say what was causing the stress, what particular things in my life, that I was doing.

My own behavior was causing this stress, and I didn't realize it.

Lilian: When you're stressed, have you connected it to the symptoms as well?

Andy: Definitely. Yes, definitely. Because I'll have a thought that's a stressful thought, and my tremor will start, and then I'll stop thinking about that, and I'll take some deep breaths, and I'll calm down, and my tremor will stop. It's an intrinsic link.

Lilian: You knew it before the course as well?

Andy: No, not clearly, I didn't, no, not as clearly.

Lilian: That's what you can say, maybe you can describe it better, that you go from a fog where you don't know why symptoms come and stop, go, and into… starting clarity, was that a way to put it?

Andy: That's a good word, Lilian. I was thinking exactly the same word. It gives you clarity, definitely. That gives you an element of control over your symptoms as well, because you can choose things that make you happy, that you enjoy, that make you relaxed, rather than choosing things that make you stressed.

We all have a choice.

Lilian: And with these words, I will stop the recording.

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