Condition or disease?: I had a good... - Parkinson's Movement

Parkinson's Movement
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Condition or disease?

pdpatient
pdpatient
34 Replies

I had a good friend tell me the other day that I don’t have a “disease”, but a condition. He suggested that I tell people that I have a Parkinson’s Condition because that is what it truly is.

“You are certainly not wasting away, as the name implies,” he said, adding that the word “disease” conjures up the worst in other people’s minds.

34 Replies
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parkie13

Tell your friend that you do have a disease , but he has a condition of ignorance. You could give him a printout of all the different physical and neurological symptoms.

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pdpatient
pdpatient
in reply to parkie13

I think that he was only trying to make me feel better about myself. He was talking from a perspective that I was perhaps being too negative in my thinking.

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parkie13
parkie13
in reply to pdpatient

Well, that's okay. He was trying to make you feel better. We need all the friends we can have.

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Despe
Despe
in reply to parkie13

I disagree with you, Mary. I tell my husband that he's got a condition, not a disease. Disease sounds harsh and causes negativity. Psychology is everything!

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Cons10s

Sometimes I say “nerve disorder” seems to keep things a little lighter.

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pvw2

A condition implies something static; what PD is not.

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Hikoi

I call it a condition most of the time. I find it strange that Parkinsons is called a disease while MS - Multiple Sclerosis and Muscular Dystrophy, are not generally called a disease. Nor are MSA, PSP and no doubt there are more

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jeeves19
jeeves19
in reply to Hikoi

Hikoi. Hi. How are things lately? Haven’t seen you around for a bit.

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Bundoran

I often use the phrase 'me condition'. I know its bad English but it feels more empowering for me.

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MarionP
MarionP
in reply to Bundoran

Phrase is just fine in Jamaica.

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Astra7

I like Movement Disorder. Implies it’s not degenerative and I don’t want anyone’s pity.

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GinnyBerry
GinnyBerry
in reply to Astra7

I like movement disorder. This is what I am mentally preparing to call it when someone asks me what’s wrong with my hand.

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jeffmayer

I agree were not freaks I call it Parkinson s

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Oceanflow

My neurologist said it was a syndrome.

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MarionP
MarionP
in reply to Oceanflow

Syndrome means simply that the disorder as yet does not fit neatly within the boundaries of the diagnostic system's clearly defined boundaries to qualify as a circumscribed formal definition of the named disease.

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Oceanflow
Oceanflow
in reply to MarionP

Interesting. Would you agree with my neurologist based on that definition ?

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MarionP
MarionP
in reply to Oceanflow

We have been given no actual description, if you notice, on which to judge. pdpatient said zero about what the actual symptoms were, so trying to agree or disagree on that person's information is premature. Which also means I don't know about your communication to us about what your neurologist was told and asked about, or what your neurologist was asked, and then what your neurologist then said. So far any facts and truths about pdpatient's situation have been rather vague parlor game. The only real credible discussion has been about the hypothetical question about PD in general, which I assume the discussion then has been about: "Is PD a disease or a syndrome?" That's my read so far. Probably since final diagnosis is something "official" that must meet criteria under ICD, which is also limited to those licensed to diagnose. So my whole read at the moment amounts to: ???

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Oceanflow
Oceanflow
in reply to MarionP

I appreciate your intelligent reply. My conversation with my neurologist was based not on my specific case but about Parkinsons in general. It was over a year ago that I was asking him about causes of the disease and what they had learned the past year at the university research center. If I recall correctly, (and with my slightly damaged memory it is entirely possible that I’m wrong) in his response I believe he mentioned that they are thinking of Parkinsons more like a syndrome than a disease now.

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MarionP
MarionP
in reply to Oceanflow

Well then that would put us in one of those ongoing quandaries, which means we can add "Parkinsonism" and anything with crossover symptoms where differentiation is really difficult. These days for something that's been studied through several generations of accumulating science and engineering advancement runs the risk of encountering "the more we find out, the more we find out we don't know yet" problem and the discussion really ends down on the clinical end, which is "in this case this treatment or application or approach works and this doesn't"...

And so on, while the search for illumination on things that help symptoms and describing and influencing underlying disease mechanisms continues as the "book" widens and narrows, until some sort of common mechanism and influence of the mechanism is created; and in the meantime the trail is like a multi-lane superhighway going sometimes in the same general direction and at others lanes branching off into exits and exchanges of various sizes and complexity, onward. Like Cancer.

For me, at that point much collective distinction tends to lose a lot of meaning, like in the movie Animal House, where Tim Matheson is arguing before the Greek Council on whether the house should be de-certified and mid-sentence in passing mentions himself as "pre-Law." His buddy interrupts him sotto voce, whispering "I thought you were pre-Med," and Matheson doesn't miss a beat in his public arguing while responding to his buddy (but while everyone can hear) "What's the difference?!" and continues with his speech. For me, it's kind of like that.

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NellieH
NellieH
in reply to MarionP

Interesting. My understanding is that syndrome means a constellation of signs and symptoms.

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Zella23

I find when I tell somebody that my husband has PD - a close relative told her brother and then I got a sympathetic text to say sorry about his Alzheimer s condition, until I put them right.

Another person, again trying to sympathise told me his dad had dementia so he knew what PD was like! I then say it’s a movement disorder and it isn’t the same.

Our close friends and family, have taken the trouble to see and ask about his ‘syndrome’ and always say he looks great, coping well and are positive.

It gives him a boost with positivity especially if he’s not had such a good day.

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luisahs

I totally agree.

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Johnboy46

I call it "A pain in the A*** "

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JGreer
JGreer
in reply to Johnboy46

And more

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hercules957

I don't find it helpful to minimize the disease. We have to achieve acceptance of the disorder as soon as possible. It is what it is, it is Parkinson's disease.

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SilentEchoes

I don't like calling it a disease either, I prefer disorder, and more correctly - neurological injury.

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Cjbro2000

From Merriam- Webster Dictionary:

Disease: “A condition of the living animal or plant body or of one of its parts that impairs normal functioning and is typically manifested by distinguishing signs and symptoms.”

The “one of its parts” is the brain. Parkinson’s “impairs my brain’s normal functioning” in many ways. It is definitely “manifested by distinguishing signs and symptoms,” including tremors, impairment of cognitive function, balance, insomnia, trouble swallowing, irregular gait, stiffness, stammering, vivid dreams ... . I could go on and on. But, based on M-W and other dictionaries, in combination with our own individual experiences and symptoms, I think we can accurately state that Parkinson’s is clearly, by definition, a “disease.”

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MarionP

My spouse has congestive heart failure, among other things. Congenital, i.i., born with it, along with an extra heartbeat every 2nd beat, such that the ventricles don't have time to fill before compressing again. Lately results have been good. The NP assisting the doc suggested some professionals start to downplay the use of "failure" when, more and more, cases no longer imply the disastrous end stage disease state that "failure" colloquially implies, as it no longer implies chronic imminent disaster.

So maybe the word "condition" is a less definitive substitute term to use socially and psychological term to ease the connotation.

Also, the word "condition" can be used as either a noun (I have a condition) or adjective (my disease is in good condition, or "my current disease state is is remission, or stable, or chronic phase, etc.). I.e., as a modifier.

"I just dropped in to see what condition my condition was in."

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Maltipom
Maltipom
in reply to MarionP

Closing line is fabulous. That song will now take on a whole new meaning for me.😀

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rescuema

It's a disease but matter of semantics, however you want to call it.

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Bazillion

Baz certainly calls his Parkinson’s a condition but mainly he refers to it as a b...... inconvenience !!

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tarz

Whats the difference? All diseases are conditions, but not all conditions are diseases. Its all a matter of semantics. Since there have been people who have overcome the PDC (do your own internet search), I think of it as a situation I am currently experiencing.

I realize, however that many of those who receive financial gain from treatment of disease, would like us to think that they are all incurable, thus promoting the idea that we need to expect lifelong treatment until we die.

Think of all the billions of dollars that would be saved if we were all taught true disease causes and prevention, rather than turning our lives over to the "medical Professionals" and the pharmaceutically controlled and financed medical schools that have brainwashed them.

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NellieH

I agree with your friend. I think Parkinson's is a syndrome, not a disease. Also, the word disease carries so much stigma in our society, perhaps a hangover from an earlier time when disease theory was developing and diseases were all thought to be contagious or related tho "unclean" living, etc. Those kinds of stigmas get internalized and we stigmatized ourselves.

Parkinson's is a neurological condition that presents as a syndrome. Just say Parkinson's and drop the D.

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NellieH

PS - I'm glad you have such a thoughtful, loving friend who sees you as a whole person.

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