Blogging with Parkinson's

A personal perspective on Young Onset Parkinson's

Is There a Parkinson’s Personality?

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I’ve come across conjecture that a certain type of person is more likely to develop Parkinson’s a number of times now, most recently in the film about Barbara Thompson described in my last post. Barbara’s consultant suggested that people who are in some way driven or obsessed were more likely to get Parkinson’s. Other, vaguer, sources have suggested that Parkies are inherently more intelligent than average.

So I decided to do a quick survey of the literature (or, rather, the abstracts available on the Web). You can skip the details and go straight to the summary if you wish.

A 1993 article in Neurology suggested that we weren’t thrill-seekers:

Studies suggest that Parkinson’s disease (PD) is associated with a particular group of personality characteristics. With relative uniformity, PD patients are described as industrious, rigidly moral, stoic, serious, and nonimpulsive.

[… The study was based on a personality questionnaire which uncovered a low tendency towards ‘novelty seeking’ among people with Parkinson’s …]

Patients with low novelty seeking are described as being reflective, rigid, stoic, slow-tempered, frugal, orderly, and persistent, characteristics similar to those in the clinical description of PD patients. We review evidence supporting the claim that novelty seeking is dopamine-dependent, and suggest that damage to the mesolimbic dopaminergic system causes the described personality profile of PD patients.

“Dopamine‐related personality traits in Parkinson’s disease”
Matthew A. Menza, MD, Lawrence I. Golbe, MD, Ronald A. Cody, EdD and Nancy E. Forman, MD

But that is (theoretically) an effect of the condition. What about before Parkinson’s manifested itself?

The medical term for “preceding the symptoms of disease or disorder” is premorbid. This term appears in a number of abstracts, from which I gleaned a fairly consistent general description of potential Parkies as rather reserved, upright types. Rather like the postmorbid description, in fact.

One paper – from 1983 – was more forthcoming. In common with several other studies, the researchers used a personality test to attempt to establish the personality of a small sample of patients:

The results obtained suggest that parkinsonian patients are of an introverted and anancastic premorbid personality type. In the [personality test] marked trends toward “overcontrol”; “depressiveness”, “positive social resonance”, and “social impotency” were observed. The results are discussed and related to findings of distinctive premorbid smoking and drinking habits of parkinsonian patients.
“Premorbid personality of Parkinson patients”
Poewe W, Gerstenbrand F, Ransmayr G, Plörer S
Journal of Neural Transmission. Supplementum [1983, 19:215-24]

Anancastic means “pertaining to any form of repetitious stereotyped behaviour that causes anxiety if prevented” and is often used to describe obsessive behaviour. This may be where Ms. Thompson’s consultant got his “driven personalities” from.

I am not sure what the following study actually consisted of, because the abstract – reproduced in full below – does not actually say. However, I imagine it to have been a review of the literature.

For decades clinicians have postulated a characteristic preexisting personality in patients who develop Parkinson’s disease (PD). They are described as moralistic, law-abiding, conscientious, and averse to risk-taking. The limited personality surveys tend to be confirmatory, but most of the literature is anecdotal or replete with unprovable psychodynamic postulates. In addition to an apparent stability of marriages and lack of alcoholism, patients with PD are less likely than controls to be smokers. It has been suggested that nicotine and its byproducts are not actually protective against PD, and it could be postulated that higher-than-average intrinsic dopamine may facilitate addiction. Smoking for the patient who is later to develop PD may be particularly unrewarding. In addition, the postulated personality for PD may predispose to hard work, perspiration, and increased exposure to putative trace elements in the water supply.

“Is there a premorbid personality typical for Parkinson’s disease?”
George W. Paulson, MD and Nahid Dadmehr, MD
Neurology
May 1, 1991 vol. 41 no. 5 Suppl 2 73-76

I did find a review from 2006 of past literature, all of which was, apparently, found lacking in some way.

Rigid and introverted personality type has been suggested as possibly associated with risk of Parkinson’s disease (PD). However, to be a risk, the measurement of personality must precede the onset of PD, more than simply reported as personality in PD cases. Several reviews have been published examining the literature base for this suggestion; however, the issue of “premorbid” personality measurement was not emphasized. […] No articles met all selection criteria. Four articles met most selection criteria and three of them reported significant differences in personality features said to be present before PD onset and between PD cases and controls. PD cases were more introverted, cautious, socially alert, and tense than controls. […] the general descriptions of PD patients included nervous, cautious, rigid, and conventional. There do appear to be parkinsonian characteristics, but these studies were all retrospective. To confirm that personality traits precede PD onset and are a risk for this condition, prospective research is required. Even then, the term “premorbid” is difficult to define due to the unknown latent period before onset of PD. Additional research would involve correlating personality characteristics to activities or changes in the brain.
© 2006 Movement Disorder Society

Ishihara, L. and Brayne, C. (2006), What is the evidence for a premorbid parkinsonian personality: A systematic review. Movement Disorders, 21: 1066–1072. doi: 10.1002/mds.20980

It is difficult to imagine how any study could determine premorbid personality without recourse to retrospective methods. The study noted below used a retrospective questionnaire to try to establish personality differences between pairs of twins – one of whom had Parkinson’s, one of whom didn’t. They found:

[…] During premorbid times the affected twin with later Parkinson’s disease was estimated to have been “less often the leader” in the twin pair.

Although small in sample size, this twin study indicates a genetic impact for some personality features beyond the Parkinson’s disease motor syndrome.

“Personality, depression, and premorbid lifestyle in twin pairs discordant for Parkinson’s disease”
Ilse Heberleina, Hans-Peter Ludinb, Joachim Scholza, Peter Vieregge
J Neurol Neurosurg Psychiatry
1998;64:262-266 doi:10.1136/jnnp.64.2.262

I still marvel at the ability of researchers to locate convenient pairs of twins.
Another review, this time with a mercifully brief abstract:

A review of the extensive descriptive literature suggests that many Parkinsonian patients exhibit an emotional and attitudinal inflexibility, a lack of affect and a predisposition to depressive illness, which may antecede the development of motor abnormalities by several decades. Introspective, over-controlled, anhedonic personality traits together with suppressed aggresivity are frequently found. It is unclear whether these behavioural patterns are relevant aetiological factors or prodromal symptoms of the disease.
“The pre-morbid personality of patients with Parkinson’s disease”
C J Todes, A J Lees
J Neurol Neurosurg Psychiatry 1985;48:97-100 doi:10.1136/jnnp.48.2.97

Quite right: it is difficult to determine cause from effect in these cases. And is that Cecil Todes popping up as an author, there?

It occurred to me to wonder if anyone had done any research specific to the premorbid personalities of Young-Onset Parkies. After all, if there is a personality type more at risk of developing Parkinson’s, you might imagine that such people might develop the condition earlier. I couldn’t find anything apart from a note that there were “no differences in the […] personality characteristics” between young and old onset in an article entitled “A comparison of clinical and pathological features of young‐ and old‐onset Parkinson’s disease”. The article did not seem concerned with any premorbid characteristics.

Finally, I tried to find the source of the suggestion that us Parkies are inherently more intelligent than average. There didn’t seem to be any research in this area; most of the articles that I found discussed cognitive impairments caused by Parkinson’s.

Summary

There may be a pre-Parkinsonian personality. It seems that people have gone looking for it, and found one (which is, in itself, highly suspicious) – but nobody is quite sure whether these personality traits are indicative of a likelihood of developing Parkinson’s or an early symptom. As Parkinson’s is generally deemed to have been present up to 10 years before diagnosis, it may be difficult to ascertain whether the common traits were genuine aspects of an individual’s personality or whether they were imposed by the beginning of a decline in dopamine.

If there truly is a pre-Parkinson’s personality (i.e. one that indicates an increased risk factor of the condition), then it is typified by a number of traits that seem to describe a reserved, well-behaved type with a tendency to depression and possible obsessive behaviour (the illustration shows a selection of words used to describe the personality type).

I fit some of that description, but not all of it. I do not believe that my personality has changed appreciably within the last 10 years or more (so I don’t think my personality has been affected by the condition). I have to say, though, that I’m not entirely convinced by the idea that there might be a pre-Parkinson’s personality.

I would be very interested to hear whether other Parkies feel that they fit the description – please leave a comment if you are happy to share your feelings on this!

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11 thoughts on “Is There a Parkinson’s Personality?

  1. Muhammed Ali is the world’s most famous person with Parkinsons, and he never seemed backward in coming forward. Though he did suffer repeated blows to the head in his line of work. As you say, nothing very convincing. People love looking for things that confirm stereotypes, and usually find them. Also, people without a condition love to identify reasons why they won’t get it !

    • I don’t think that Michael J. Fox is much of a wallflower, either. It’s interesting to muse upon, but the whole idea is a bit… dare I say unscientific? Measuring a personality seems a very difficult thing to do. Probably best left in the realms of anecdote and conjecture.

  2. Quite a lot of these traits fit my father but they were more to do with the circumstances in which he was brought up (Victorian parents; living through 2 world wars; having very little in the way of possessions or spare cash; having to fend for himself). I don’t think they became any more pronounced in the 10 years before he developed Parkinsons.

  3. My husband was diagnosed with PD 1994 – he is now 69. When we married in 1979, he was very outgoing, cheerful highly optimistic and quite adventurous, also clever and highly knowledgeable within his own field, but not interested in a lot else. He was ambitious, hard-working and conscientious, also honest and probably too nice to make it all the way to the top in his chosen field, but he did pretty well all the same, before having to retire 2 years early because of the PD. The adventurousness has gone now, but he is still amiable. A disinclination to change his mind on anything has always been a feature, but isn’t that a male characteristic? There’s too much anecdotal “evidence” about PD personalities, and not enough hard data.

    • Thank you for your comment, Kathryn. I can imagine that just having PD is enough to curb one’s adventurousness. (Which is why I was scrambling across Cornish cliffs on Friday, of course – trying to deny it – and had a “You must be joking, I’m not going that way” moment at an especially steep bit.)

  4. I was shocked rigid when I first read the description of a `Parkinson`s personality` because if I had sat for hours I could not have come up with a more fine-tuned description of my father`s personality than the one I read. I think it is fascinating. I am inclined to think that it is more likely to be very early symptoms of the disease rather than someone having an increased risk of acquiring the disease because they have that personality type. That doesnt seem logical to me at all. Its like saying if you have a giggly personality you may be more likely to get measles. My father has had these traits as long as I have been aware of his personality from being a child and he is now 89. He has only had his diagnosis in the past 5 years.

  5. Hello, Many of the words, terms, descriptions here fit a friend of mine who has Parkinson’s. I have known him for 30 years or so. I now find his thinking very rigid and have often tried to remember if this was previously the case. I believe it was but also recognize a sort of cognitive bias in my retrospection.
    More generally, I think the problem of there being personality types for any disease is an interesting one. As you point out, distinguishing aetiology from early symptoms is the principal difficulty. And there are several dangers including blaming the victim (oh, you got this disease because you are so x). It is difficult to measure personality, yes, and often attempts at doing so read like astrology (despite the use of quantitative methods, scales and so on).
    What I think CAN be drawn from this however, very loosely, is that pathologies of any kind represent an imbalance… but I’m not sure that means very much.

  6. Hello Zalamanda. Thank you for this very interesting post which I stumbled across recently when responding to a query from a lady who asked me about whether there is a ‘Parkinson’s personality’.

    I work in the research team at Parkinson’s UK and I’m the editor of Progress magazine (www.parkinsons.org.uk/progress). How would you feel about us publishing an edited version of your post in the magazine? I think it would make a really interesting article – it’s obviously an issue that prompts debate judging by the number of comments!

    If you’re interested please contact me by emailing research@parkinsons.org.uk

    Many thanks!

  7. I was shocked that we are in the dark about disease beginnings (etiology) after so many years of
    scientists searching. The only disease-beginnings that are obvious are fornication diseases like
    syphilis, aides, gonorrhea, herpes, etc. Malaria victims have the “same experiences” being bitten
    by an infected female mosquito, but we don’t know how the first mosquito became infected. We
    tend to favor everything physical concerning causes, like the presence of poisonous substances,
    or the lack of vitamin C hurting sailors of old. My wonderful brother-in-law is fighting PD, and
    he is a man of God–very spiritual! Then, there is Billy Graham, and one of the Popes with
    Parkinson’s. For 34 years, I did not witness a miracle, nor with anyone around me. Now, I’ve
    seen so many…like being dead for three hours, etc. I’m ashamed I tried to prove the Bible
    wrong for 40+ years, but there is nothing false in it for disease beginnings–the presence or the
    absence of spiritual, moral, or physical causes. Examples: sorrow can hurt your eyes; anger
    can kill a person; hate can make you a murderer. What is on the death certificate? I want to
    guess if there is a “moral” cause of Parkinson’s, it might be “not seeking, spiritually.” I made all
    the mistakes almost possible, having become brain-damaged, and mentally gifted-retarded at
    5 months old from Pertussis (whooping cough near-death & high fevers). Satan is real. You
    need all the gifts God wants to give you. I turned my nose up at the gift of tongues for praying.
    That was evil of me. My brother-in-law doesn’t have that gift. Does Billy Graham use it if he has
    it? Does the Pope, who stepped down, have this gift and use it? Maybe I sound cruel, but I
    really care! I trusted the experts to figure out polio etiology, and glad for the Salk vaccine, but
    polio still breaks out. I could give you a scripture for its beginning, but without a scientific degree,
    I can’t. Also, terrorists might try to use it. Love to all PD victims!

  8. Pingback: Published in Progress | Blogging with Parkinson's

  9. My father suffered from young onset Parkinson’s disease. His personality underwent a very steady transformation over the years, prior to development of the motor symptoms of the disease. My father in his early years was novelty-seeking and addiction-prone. He was addicted to smoking and drinking, and also demonstrated behavioral addiction. He loved taking risks. He had a deep love for literature. He was a perfectionist from as long back as one could remember. However, over the years, he transformed into a rather introverted and emotionally blunt individual with a very narrow range of interests- a schizoid personality. His range of interests progressively declined as the motor symptoms progressed. Probing deeper into his childhood, I gathered that he had suffered a lot of abuse as a child and I think he repressed those experiences and diverted his attention to activities that were rewarding, in order to escape the unpleasant feelings. I strongly suspect repression at that young age might have something to do with the etiology of the disease, in the setting of a novelty-seeking personality.

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