“A common frustration expressed by caregivers…”

March 27, 2011 at 7:01 am (By Amba)

. . . is the inability to find physicians who are knowledgeable about LBD,” or Lewy body disease. It is the second most common dementia, yet it is misdiagnosed 80 percent of the time (J’s was), leading to suboptimal treatment at best and disaster at worst, since people with Lewy react very badly to antipsychotic medications that are often given to agitated Alzheimer’s patients.

Finally, finally, a major medical center, NYU Langone, is doing something about it.  (And in New York!  If only.)  In J’s honor, take a moment to learn a bit about the disease that killed him.  It may help you help someone in the future, or belatedly recognize what it was that really ailed someone you loved.  And pass it on.


  1. david said,

    Dang. And only a couple of subway stops or a short cab ride away . . .

  2. mockturtle said,

    Glad to hear it!

  3. amba12 said,

    It still bugs me that the neurologist had to put on J’s death certificate “Parkinson’s disease” as the underlying cause and “Pneumonia” as the proximate cause. He had neither!! But those probably fit recognized categories for causes of death, and I feared that everything would be excruciatingly delayed if I contested it. Thus statistics get skewed and Lewy falls through the cracks.

  4. mockturtle said,

    I think if more people realized that Parkinson’s Disease is a Lewy Body Disease and that Lewy Body Dementia is caused by the same pathology as PD but in different parts of the brain it would make Lewy Body Disease the ‘Big Picture’ that it should be. Alas, my husband’s chart still has Parkinson’s Disease as the primary dx with Lewy Body Dementia as a secondary dx, even though his neurologist says he’s quite certain he has LBD. I’m sure it’s because PD is widely recognized while LBD is not and maybe there is a Medicare/Insurance issue that makes diagnostic hair-splitting disadvantageous.

  5. amba12 said,

    That sounds exactly right. What’s amazing is that so many doctors don’t yet have that Big Picture.

  6. mockturtle said,

    You’re right, Annie, they don’t. Not even many–if not most–neurologists. :-(

  7. karen said,

    My Dad comes from a large family-10 kids, 5+5. One sister died of brain tumors and the other four of Alzheimer’s. I remember reading the dictionary(a favourite pass time to try and keep up w/y’all here)- and a disease, not Lewy, though- sounded exactly like what they suffered from. More of a quick progression along w/physical setbacks. I’ll never find it again, i wager. I think of it often because it may have me in mind some day.

    Yet, it could maybe have been Lewy? The boys were not affected w/this disease.

    My Dad’s the last one left. 78:0).

  8. amba12 said,

    Not Huntington’s, I hope?

  9. justkim said,

    I just saw a story on our 24-hour local news channel about a woman who had been misdiagnosed with Alzheimer’s for the last six years. Once there was a correct dianosis of and treatment for Normal Pressure Hydrocephalus, her symptoms reversed.


  10. amba12 said,

    Yes!! That’s another one that is often misdiagnosed — and, cruelest of all, it is actually treatable. Doctors tend to assume that if there’s dementia it must be Alzheimer’s, just as I’ve seen them assume wrongly that something is cancer . . . in 1975 J had back pain, fever, and shadows on two vertebrae. The doctors made the assumption that it was metastatic cancer and wasted two months searching all over him for a primary tumor while he got worse and worse, since he had a spinal staph infection and a large and growing abscess behind one lung that communicated with it. Finally, they just went in and found all the pus.

    The irony is that early in the process I went into a bookstore, picked up a book called Oh, My Aching Back, and read “Sudden back pain with fever: spinal infection.” I put the book back on the shelf and thought, “Well, what do I know.”

  11. wj said,

    It’s sometimes amazing how often something relatively rare (or at least apparently so) is mis-diagnosed as something more common.

    Have seizures? Must be epilepsy. Even if the EEG is all wrong for that. Even if they occur routinely at 4 month intervals, and consistently at 4 AM (not at all typical of epilepsy). Even if they can be reliably triggered by a blood-sugar crash — skip dinner and have a milk-shake at 10 PM ==> go bump in the night 6 hours later. Still, count on the neurologist to start with dilantin and work thru the various anti-convulsants, even though none of them have any effect whatsoever.

    It really is quite frustrating. But i suppose it is a major incentive to do your own research, rather than relying exclusively on a certified “expert”. Who says that the days of doing pretty much everything for yourself have been replaced by hiring experts for everything you want done?

  12. amba12 said,

    Any intriguing findings in the research?

  13. karen said,

    Huntington’s– wow. I just looked it up, not knowing off-hand the disease, only the name. I hope not- at least that wasn’t the name i found in the dictionary. I thought it started w/an “r”- i should have written it down. They started when in their late 60’s or so, maybe younger– had it for about 8-10 yrs and they were all very delicate women, fragile, almost. It honed them down and it made them all so helpless:0(.

    It wasn’t like they forgot things- either– it was more that they couldn’t recall, does that make sense? They knew what(at least, the one that i had a lot of contact w/, i shouldn’t say ~they~)she knew what she wanted to say, she just couldn’t get the damn word out. I feel that way sometimes, i’m not all that old, but my brain seems very tired.

  14. amba12 said,

    No, that doesn’t sound like Huntington’s. Aphasia is the symptom when you know what you want to say but can’t find the word. http://www.disabled-world.com/health/neurology/primary-progressive-aphasia.php

    Your brain is tired from shock and stress. I can relate. Give it some time and, hopefully, peace, if life allows.

  15. karen said,

    Thank you, amba. And the e-mail? it means a lot, too.

  16. A said,

    “But i suppose it is a major incentive to do your own research, rather than relying exclusively on a certified “expert”.

    That’s pretty much where I live. It’s tiring and fosters cynicism and doubt, both wearing qualities as a steady diet….

  17. joared said,

    My view is, absolutely, today with reliable Internet medical sources, research diagnoses, symptoms, treatments, etc. Likewise look closely at medication side effects i.e. statins may contribute to inc. diagnosing of diabetes type II. Have been dementia diagnoses that actually were undiagnosed CVAs — stroke. Find the discussion of Parkinson’s and Lewy Body Disease of interest.

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