[Stitcher]

Parkinson's disease makes it harder to figure out how other people feel

Behavioral Health Central, Fri 3/5/2010
http://behavioralhealthcentral.com/i...ople-feel.html

Studies find facial and vocal expression more difficult to read; deep brain stimulation seems to make it worse

WASHINGTON — Scientists are beginning to find out why people with Parkinson's disease often feel socially awkward. Parkinson's patients find it harder to recognize expressions of emotion in other people's faces and voices, report two studies published by the American Psychological Association.

One of the studies raises questions about how deep brain stimulation, the best available treatment for patients who no longer respond to medication, more strongly affects the recognition of fear and sadness. A neurodegenerative disorder, Parkinson's causes tremors, stiffness and balance problems, as well as fairly frequent depression and dementia.

In the March issue of Neuropsychology, Heather Gray, PhD, and Linda Tickle-Degnen, PhD, report that people with Parkinson's disease, compared with matched controls, often have difficulty discerning how others are feeling.

[lindylanka]

I just had to comment on this....

Yes, I would agree that sometimes we don't make those connections with other people, but this study seems to be only about PD impairment, and interactions with people are more than one-way......

There is another much more widely acknowledged aspect to communication, and that is that people who do not have PD do not 'read' us well, because of the way we look, or because they are unaware that our lack of facial expression is not a mood but a symptom, or their own reactions to disability, and to social fears. I would say this is much more disabling. I have poor facial recognition for people who have aged or changed their look, hair, etc. I can recognize this in myself, as I can any speech communication issues. And apologize if I have goofed up.

People with disabling conditions do more often than not feel socially awkward to some degree, and it is not all about their condition.

Disability is a two way street.......

Lindy

[Aleks]

I have commented the article on PLM. Copying is not allowed so this is a slightly different comment. Well, time is running out for us all, so here it goes, by the way I had hoped for some reactions on PLM, now:
This is an attempt, a very original attempt trying to explain why we having lived with PD for years sometimes feel akward in social settings. Why didn`t they ask us? Yes, why. The answer is plain and simple, no meta analysis needed. If you have a body with no movements at all or too many strange movements AND a voice not to be trusted, AND a body language difficult to read, how can you not feel an alien in some settings. Enough good reasons, or? Some original brains wanted to find more . They got money, not to believe unless your country likes programs for science. The patients were there, and they started with an original hypothesis. Conclusion: People with advanced PD are not feeling ok socially, beacuse they cannot read the surroundings different reactions. Amazing knowledge. The action shall be, we PWP have to learn how to interpretate faces and different expressions. And I thought it was the other way round.
I do not believe that teaching me about interpretation of different facial expressions will increase my social ability, when my feet are going through the floor and my body is twisting like Tina Turner.
I do not understand what kind of thirst for knowledge this represents. We know something about the brain of other groups who cannot communicate. People with autism do not have so called mirror neurons, important structures and necessary in reading other people. People with autism do not know what the world expects from them. What about our mirror neurons? Does this study mention anything about any anatomical structures except something vague about PD not restricted to the commandotower of our movements. What about our mirror neurons? Do they go down the drain with most of our substantia nigra?
With respect we do not have time or money for information like this.
Science must concentrate on basic information on how the brain works. No room for fairytales or strange hypothesis, but decent hard work. People out there are suffering.
Aleks

[paula_w]

This is one of the biggest reasons I go to BIO instead of PD conferences. In general, people think if you look retarded - you are retarded and i use that word for emphasis. I can feel the stares; i'm told by friends that i am stared at. Then when i open my mouth a lot comes out, pouring out it seems. However, no one can hear me or understand.

BIO gives me a chance to practice being social; my inclination is to stay home. I am keenly aware of how others react when they realize they can't hear or understand me. One guy just moved closer right in my face. He was so cute, my cognitive troubles surfaced - i was too distracted to remember what i was saying. [cough]

i think someone should keep track of these new disorders that are being assigned to us. They are adding up. i know how to read other people pretty well actually. i like to discover what makes people tick......the opposite of the article is true of me.

Aleks i'm with you what purpose does this article serve except to make us look more confused.

[pkell]

Here,Here!! to Aleks and Paula. The ideal that we cannot read people is such non-sense I can hardly comment on it. Maybe our apparent disinterest in their feelings is because we just don't care any more. Maybe we have been dismissed and ignored so often that social interaction with "normal" people is no longer an important concern. Maybe we have been adjudged "in our cups" when we've had nothing to drink or boring because we can't be heard or because our face is not animated enough.

Maybe it isn't that we can't read their facesm maybe we just don't give a
*%&$.

There are so many things that need to be studied why are we wasting time on this kind of non-sense.

[lindylanka]

Glad I am not the only one who feels like this - being treated as though you are drunk is not great either - the bus that I use to get home when I have been shopping is right by a pub, and I get lot's of negative stuff, and I rarely drink. But I sure can recognise the real drunks!

Lindy

[Conductor71]

Originally Posted by Aleks

Conclusion: People with advanced PD are not feeling ok socially, beacuse they cannot read the surroundings different reactions. Amazing knowledge. The action shall be, we PWP have to learn how to interpretate faces and different expressions. And I thought it was the other way round.
I do not believe that teaching me about interpretation of different facial expressions will increase my social ability, when my feet are going through the floor and my body is twisting like Tina Turner.
I do not understand what kind of thirst for knowledge this represents. We know something about the brain of other groups who cannot communicate. People with autism do not have so called mirror neurons, important structures and necessary in reading other people. People with autism do not know what the world expects from them. What about our mirror neurons? Does this study mention anything about any anatomical structures except something vague about PD not restricted to the commandotower of our movements. What about our mirror neurons? Do they go down the drain with most of our substantia nigra?
With respect we do not have time or money for information like this.
Science must concentrate on basic information on how the brain works. No room for fairytales or strange hypothesis, but decent hard work. People out there are suffering.
Aleks

Aleks,

May i ask by PLM do you mean Public Library of Medicine?

You make so many good points about this dubious line of research on the typical "Parkinsonian Personality". In the first place, this disease already strips away so much from us; I find it deeply insulting that someone could even conceive of further reducing us down to a set of cardinal behaviors or psychosocial deficits. While not their intent to offend, really this whole line of research is dehumanizing, pointless, and devoid of anything substantive or useful. I may reconsider if it can be parlayed into something remotely useful, like say, improving our quality of life. Ironically, I think their goal is to somehow help, but it really just serves to further alienate us by giving us yet another way to note how we are "different". It is a zero sum game they play with us, always reduced - we are never more than the sum or our parts. Herein lies the heart of our problem; Western medicine is reductive; research further pulls us apart, but just who is putting us all back together?


Laura

[Aleks]

Originally Posted by Conductor71

Aleks,

May i ask by PLM do you mean Public Library of Medicine?

You make so many good points about this dubious line of research on the typical "Parkinsonian Personality". In the first place, this disease already strips away so much from us; I find it deeply insulting that someone could even conceive of further reducing us down to a set of cardinal behaviors or psychosocial deficits. While not their intent to offend, really this whole line of research is dehumanizing, pointless, and devoid of anything substantive or useful. I may reconsider if it can be parlayed into something remotely useful, like say, improving our quality of life. Ironically, I think their goal is to somehow help, but it really just serves to further alienate us by giving us yet another way to note how we are "different". It is a zero sum game they play with us, always reduced - we are never more than the sum or our parts. Herein lies the heart of our problem; Western medicine is reductive; research further pulls us apart, but just who is putting us all back together?


Laura

Hi all, thank you for your interest.
Laura, PLM is a website for various diseases, including PD. PLM stands for Patients Like Me.
Laura, you are absolutely right about western medicine becoming more reductive. Reductionism starts in medical school . Increasing specialization reduces a patient to a car with hopefully only one and one very distinct defect. Even a mechanic knows that a car is not just one part but a whole. Holistic medicine is forgotten or maybe just too time demanding, which is nonsense. A development from a holistic to a reductionistic attitude makes the whole area of medicine poor.
Aleks

[rose of his heart]

Originally Posted by lindylanka

Glad I am not the only one who feels like this - being treated as though you are drunk is not great either - the bus that I use to get home when I have been shopping is right by a pub, and I get lot's of negative stuff, and I rarely drink. But I sure can recognise the real drunks!

Lindy

Hi Lindy,

Although I benefit from your posts almost daily, the language around alcoholism in this one (as well as others' posts on the subject) troubles me.

In advocating for respectful, informed treatment for one community of people who share a common disability (PWP), must we demean another (people living with alcohol addiction) by referring to them as "the real drunks?"

No matter one's disability, s/he deserves to be treated with respect. Police officers and emergency workers do (or should) received training in this, as well as in the causes, behaviors and positive intervention strategies regarding Parkinson's, alcoholism and other behavior-affecting conditions.

Meanwhile, language matters.

Although I am not suggesting this was your intent, let's not create/reinforce a hierarchy of disability in which we marginalize other communities in an attempt to help our own. And let's remember that some readers of this PD forum may also be (or care for) a person with alcoholism.

While we are at it, shall we update "real drunks" to "people living with alcoholism" or some less shame-inducing term?

Not completely PC,
(Irish) Rose

[paula_w]

Rose,

That's a good point and it has never occurred to me. I don't think anyone means to degrade alcoholics. But being accused of drinking isn't the same as being accused of always drinking. It doesn't make the pwp accused of being an alcoholic. It means they are being accused of drinking or being drunk right then and there. I don't think even alcoholics like to be visible to the world when they are drinking heavily enough to stagger like we do sometimes.
But i do understand that alcoholism is an illness and a very serious one. So thanks for making me aware of people who are dealing with it in their lives in any way.