My mother-in-law has symptoms that may be consistent with a diagnosis of Lewy Body Dementia, but so far she has not been diagnosed. Is anyone aware of a neurologist (or other physician) in the Orlando, Florida, area who is aware of and/or has experience with diagnosis and treating LBD? Thank you.

I'd suggest contacting:

Karen (Karle) Truman, Ph.D.
Dementia Caregiver Resources, Inc.
727.391.9999

I believe she's in Tampa but can advise about dementia specialists throughout Florida.

If you are willing to drive, I'd suggest:

Dr. Benjamin Barnea
Coral Springs Medical Center

Dr. Jay Van Gerpen
Mayo Jacksonville

Mother-in-law is on a waiting list for Mayo in Jacksonville, but they said that could take up to a year. We'll check with the Dementia Caregiver Resources, thank you.

Why don't more physicians know about LBD? The literature says that 1.3 million Americans have it. That's better than 1 in 300. And doctors seem never to have heard of it.

The neurologist who saw mother-in-law only saw her during a good period, which may last for days or weeks and then switch abruptly to an awful time of psychosis, hallucinations, and anger that makes her uncommunicative and totally disabled. But doctors never stick around long enough to see it. It gets summarized as an "alteration of consciousness", which is a major understatement of what actually happens.

If she goes to the ER, they want to treat her for delirium, even though she never has any signs of infection. Still, they want to give her Haldol or Ativan, which makes her so much worse.

And part of the family just says that dementia is dementia and she is just old, even though the literature says that they may benefit from cholinesterase inhibitors like Aricept as long as they avoid older psychotropics like Haldol, and so the treatment is somewhat different from that of other dementias.

I think the second consensus guidelines for diagnosing DLB were published about 2005. Many MDs practicing now were long since out of med school by that time.

I don't think there are any approved diagnostic criteria yet for PDD.

It's really important to see a specialist -- either a dementia specialist (neurologist in a memory clinic or geriatric psychiatrist) or a movement disorder specialist (neurologist in a movement disorders clinic) to have a shot at MDs who know about these diseases.

So far, no luck. We can't find anybody who knows about LBD outside the Mayo Clinic, and they have a waiting list so long that an appointment can take months to a year.

Is Dr. Barnea no longer practicing?

For Dr. Barnea, Coral Springs is way south of Orlando. We need someone in the Orlando area. We may have located a geriatric medicine specialist (internal medicine, not neurology) with knowledge of the disease. We'll see. Having a diagnosis may affect what kind of facility will accept her and how they handle costs in addition to her treatment.

With 1.3 million Americans with this disease, and so much difficulty trying to get it diagnosed, why has there been no national news coverage regarding it? Surely they could take a short break from the Republican Primaries battles and Casey Anthony video blogs to report on something like this.

Dr. Bruce Hoffen (in Longwood) diagnosed my mother back in November.

I'm not sure of his "expertise" in the area, but at least he is familiar with the disease and I've been satisfied with his care so far.

Money.

This is no money, when the answer is found, only a money drain.

There is no fix, only an ugly reality that those who don't face, don't want to talk about.

There is nothing romantic about it, nothing noble.

There is no hero riding off into the sunset…….

…..

The money is in not knowing, and that is where rest of the world prefers to stay.

but……they are wrong……
there is a story…..
there are heroes…….

I read about heroes here every day…..
I read about more romance and noble actions…..than my lonely heart can endure….yet I yearn for more….
What a story…...

the six o'clock news isn't about what is real…..
we are….

It is about the money…..
this isn't a money maker…..

We have to win them with the story….

We have to win them with the value of life….

There are many forces out there right now…..that are working to devalue…..the value of 'life'…….
the six o'clock news…..is one of those forces…..the statistics bear that out……

I grew up with a learned notion……
one judge's a society by how they treat their 'young'….and their 'old'……..
yet there are movements to deny life to both……at a whim…..

please remember….anything I write….is just my ramblings…..

maybe if …..death and the dying by kubler ross was required high school reading…..

Hi--I am just checking in after a long period away. Are you still looking for an Orlando Neurologist? On our primary care doctor's recommendation, we have Dr. Mark Klafter in Orlando. He diagnosed my husband with LBD two years ago, after exams, tests, and ordering neuropsychological testing. Have been very happy with him. With two medications, my husband is doing very well and his deterioration has been very slow from year to year--I realize this may be luck. Other doctors have provided positive opinions of Dr. Klafter also.