[lou_lou]

dear paula and all~
I find great difficulty, thinking something is wrong with the PD community...
tried reading -yet it is too full of crapola?
perhaps we are eccentric
according to the wiki dictionary:

Eccentricity is often associated with genius, giftedness, or creativity. The individual's eccentric behavior is perceived to be the outward expression of his or her unique intelligence or creative impulse.[1] In this vein, the eccentric's habits are incomprehensible not because they are illogical or the result of madness, but because they stem from a mind so original that it cannot be conformed to societal norms. Edith Sitwell wrote:

"Eccentricity is not, as some would believe, a form of madness.






http://www.answers.com/topic/eccentricity-behavior

http://en.wikipedia.org/wiki/

[lou_lou]

It is often a kind of innocent pride, and the man of genius and the aristocrat are frequently regarded as eccentrics because genius and aristocrat are entirely unafraid of and uninfluenced by the opinions and vagaries of the crowd.
While as a nation the British are often depicted as eccentric by other nations, inside the UK this epithet is most usually reserved for the English. Their twin national characteristics of insularity and ingenuity produce a frame of mind conducive to designing individual solutions to the problems of life, and then sticking with them in spite of social disapproval.

It may also be that the British gained their reputation for eccentricity as a result of exporting their own social norms to the nations they conquered while they were building the British Empire. There are, for instance, many depictions of English afternoon tea being taken in jungle environments or half-way up Everest.


Comparison to the norm
A person who is simply in a "fish out of water" situation is not, by the strictest definition, an eccentric since, presumably, he or she may be ordinary by the conventions of his or her native environment.

Eccentrics may comprehend the standards for normal behavior in their culture, or they may not. They are simply unconcerned by society's disapproval of their habits or beliefs. Many of history's most brilliant minds have displayed many unusual behaviors and habits.

Some eccentrics are cranks, rather than geniuses. Eccentric behavior is often considered whimsical or quirky, although it can also be strange and disturbing. American billionaire Howard Hughes, for example, was considered to be very eccentric in his old age. He became a figure of pity when news of his unusual behavior was revealed. It was rumored that he stored his urine in glass jars and never cut his hair or nails. Despite his strange behavior, Howard Hughes was a brilliant financier and aircraft engineer.

Other people may have eccentric taste in clothes, or have eccentric hobbies or collections which they pursue with great vigour. They may have a pedantic and precise manner of speaking, intermingled with inventive wordplay.

Behavioral eccentricities have often been classically associated with psychological profiles indicating overcompensation, insecurities, unresolved childhood issues, involuntary celibacy and other sexual issues, repressed feelings, social ineptness, monomania, or a variety of other influences, even if the person would not necessarily be classified as insane. Some accepted psychological profiles that are commonly attributed to eccentrics are the Oedipus complex (a primal desire on the part of a young male to compete with his father for his mother's love and affection), Napoleon complex (colloquial term used to describe a type of inferiority complex suffered by people who are short), Peter Pan Syndrome, obsessive-compulsive disorders, and autism spectrum disorders, most notably Asperger syndrome. Eccentric behavior has also been attributed to drug use.

Many individuals may even manifest eccentricities consciously and deliberately, in attempting to differentiate themselves from societal norms or enhance a sense of inimitable identity; given the overwhelmingly positive stereotypes (at least in pop culture and especially with fictional characters) often associated with eccentricity, detailed above, it would seem only natural that certain individuals would seek to be associated with this sort of character type. However, this is not always successful and the individual in question may simply be dismissed by others as just seeking attention.

Extravagance is a kind of eccentricity, related to abundance and wastefulness; refer to description in hyperbole.


References
Rogues, Villains & Eccentrics (2002)

See also
hyperbole
individualism
high-functioning autism
Eight Eccentrics of Yangzhou

References
^ "Einstein, eccentric genius, smoked butts picked up off street", The Daily Telegraph, 2005-11-06. Retrieved on 2006-09-27.


This entry is from Wikipedia, the leading user-contributed encyclopedia. It may not have been reviewed by professional editors (see full disclaimer)

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[lou_lou]

if the personality of why or why not -we do not stand together to fight for
a cure -it would be -because we are fighting our own battles daily...
the drugs work yet they turn on a Parkie thus addicting and depleteing the body of nutritional vitamins and minerals...
and drugs are not a cure,
the food we eat & the water we drink (not tap) will keep us in better condition w/ exercise, and the meds
work -as the years pass... on/ & off... some days walking is great other days crawling must be done...
I have always wished they would fund things like massage therapy, yet we are blessed to have insurance, I am on MEDICAID... and that does not provide
for dental insurance?

The NPF & et al etc, tells us to do this or that, but do they actually want cures? - if we are cured - they may lose their jobs...dog chases tail scenario -
I attended a gorgeous event for PD in florida in 2002 - it was all glamoured up with big pharma bucks and the rich and the doctors and the famous were priority,
sprinkled with a minority of actual PD patients..

yet before I was invited 2 years later ,while I asked for cures and money for filmimg a certain old doctor (well known) I will not name, said get a camcorder and film it yourself... kind of him was it not... nope it was not...


this was before we received some funding from the Texas Parkinson's Societies -Rebecca's persuaded HAPPS - they have funding from governmental grants at the time for studying and film production is part of it...
film received monies from -
HAPPS and DAPS,
and the KC crew,
& still it was funded by many individuals people who gave money, or the lawyer who allowed me to film in his gorgeous old mansion - & many funders were my friends and family...

if we want cures - we cut the one thing that will empower us as human beings - no more drug trials, until we are well paid - and keep in mind without
us, there will be no them...

I already feel hurt by the mirapex, in and of itself, that was a drug study we bought and paid dearly for some have died from the side effects, and some have died because the monkey was in the middle?

[harley]

yes, yes, and yes.. now we are getting somewhere

[paula_w]

Looks like some clarification is necessary. The title "what's wrong with the PD community" was kept so that the thread's purpose and continuity could be continued. It originated with Todd's idea questioning why the organizations could not unite and do a promotion like "Stand Up for Cancer" is doing.

This led to much discussion about why the orgs are unable to work more together, especially when it comes to a research agenda. Researchers are taking their good old five years to finish a grant, coming back for more money and inconclusive results. I stand by that criticism. People with PD are not being criticized.

Perhaps it is time to change the name of the thread. But there is room for improvement where dollars are being spent in the PD organizations and a lack of urgency that has advanced patients losing hope for change, and rightfully so.

Suggestions are welcome.l
paula