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THIS is Why Accurate Info About Parkinson’s Disease is IMPORTANT!

Posted Jan 07 2011 8:40am

, the anatomist behind the “” plastinated corpse exhibitions, announced the other day that he has , he’s had it two years, he’s noticed his hands getting clumsier and his speech getting more difficult, and therefore by his own calculations he will be dead in seven years.

HOGWASH!  And I called it such in a recent blog post .  First of all, his symptoms for two years post-diagnosis at his age ain’t all that bad!  Secondly, YOU DO NOT DIE OF PARKINSON’S DISEASE!  You die WITH it.  You CAN die from COMPLICATIONS of PD, like inhaling a milk shake because your epiglottis didn’t close in time, or falling and cracking your skull, or breaking a hip and lying around in bed and getting a pulmonary embolism or pneumonia.  But it won’t be the PARKINSON’S that kills you.  And the fact that this man, an anatomist, calls a press conference widely covered by the European press which, like their American counterparts, wouldn’t know a “fact check” if it bit them on the ASS, and says “I will be dead in seven years…” really hurts our efforts to get accurate information out there.

Imagine the impact a statement like that has on a less-than-well-informed Parkinson’s patient or his/her caregiver!

“Goodness!  HE has Parkinson’s!  He says he’ll die from it in seven years.  And he’s a DOCTOR of some sort.  What are MY chances?”

Bullshit, bullshit, bullshit, BULLSHIT!  For God’s Sake, look at Michael J. Fox.  20 years post diagnosis and he still plays golf!  Even poor little me, 11 years post-diagnosis and I’m still RELATIVELY functional and CERTAINLY not planning to DIE any time soon.

But… I knew people would believe von Hagens.  If you follow me on (and if you don’t, what’s your problem?  http://twitter.com/ParkyBill ), you see this little discussion I have going with a perfectly well-meaning, probably very nice little real estate attorney who reposted the von Hagens story last night.  I responded by saying that nobody dies FROM Parkinson’s and we should not help this guy spread his drama.

She responded…

Well, that got my dander up a bit.  Lady, how many miles can you walk in 11 years, cuz that’s how long I’ve had this thing.  So, I pointed her to the blog post from earlier in which I listed several stories where the reporters write that von Hagens is dying, has been given seven years to live, etc. and etc.  She responded.

MISSING THE POINT ENTIRELY!!!  How can he self-diagnose when and how he will be incapacitated?  Most people with PD are older than I was when diagnosed, but I’ve remained on the job for 11 years (I am filing for early disability retirement, but that’s because executive dysfunctioning and speech problems are setting in).  Again, the less-than-well-informed Parky or caregiver sees this and says, “Holy God!  He only has SEVEN YEARS??  And he’s YOUNGER than I am.  Martha!  Call the funeral home!”

So, I wrote back asking if she even bothered to read the link I sent in which the news media was reporting that “Dr. Death Says He’s Dying.”  She responded.

AGAIN, MISSING THE POINT!!!  The HEADLINES say “VON HAGENS DYING FROM PARKINSON’S!”  Is von Hagens out there CORRECTING this horrible misconception?  Is he holding press conferences to say, “The reporters misunderstood what I said.  I merely said I expect to be totally incapacitated in seven years, based on my own research (which is STILL bullshit).”?

No.  He isn’t.  Because he’s a Drama Queen!

So, I sent this very nice lady quotes from the selected news articles, all of which say “von Hagens claim he is dying from Parkinson’s.”  These, again, are articles that will be read by less-than-sophisticated folks who know little to nothing about their illness other than that they’ve been diagnosed with PD.  “OH NO!  SEVEN YEARS?  And then you’re DEAD?  Or TOTALLY INCAPACITATED?  I’ve had it for 5 years!  Martha! Call the nursing home!”

This very nice lady, whose husband has PD, has had it for 8 years, who says she KNOWS PD isn’t fatal, still defends von Hagens and his headline grabbing scare mongering.  I suggested that I wouldn’t lecture her about real estate law, and she shouldn’t lecture me on Parkinson’s disease.

@ParkyBill Never said a word lecturing you about PD & you’re really being a jerk;huz having it 8 yrs doesn’t make me an expert & I don’t judge others

Well, if trying to stop the spread of disinformation makes me a jerk, then I’m a jerk.  You would think someone with a spouse with PD would understand that.  It’s not a case of “judging others.”  It’s a matter of telling the truth.

Those who prefer the lie to the truth?  Damned if I know what to say about them.

You want ACCURATE info about PD, including prognosis, life expectancy, etc.and etc.

I find it’s best to KNOW what you’re talking about before shooting off your mouth about something.  Don’t you?

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