Yes, he had parkinsonism.

That sure complicated the diagnosis, huh?

That must be fairly unusual. Most of the AD people I see [at least in the early to mid-stages] are in pretty good physical condition--no shuffling, stiffness, etc. They walk a lot. I always assumed AD doesn't include PD symptoms.

Given how many DLB cases turn out to have autopsy-confirmed AD, I wouldn't say it's unusual at all. I assume many of those people have parkinsonism.

OK--since PD is a Lewy-body disease, why wouldn't someone with Parkinsonism have Lewy bodies in their brain??

DUKE Med Cntr also has a brain donation program that includes a free autopsy. I'm not sure about any charge for recovery from other sites.
Tom joined their research program after being diagnosed with LBD (on his intial visit) with his 2 great Drs. James R. Burke-Director Memory Disorders Clinic and Burton L. Scott-Movement Disorders Clinic. I know the memory clinic has a pamphlet on it. You also might contact Ron Nelson, Tom's research project co-ordinator -- e-mail ron.nelson@duke.edu

mockturtle,
There are many disorders that have parkinsonism as symptoms where Lewy bodies are not present.
Robin

You are right, Robin, and Mayo lists the following:
Stroke
Encephalitis, inflammation of the brain usually caused by infection
Progressive supranuclear palsy, a rare degenerative brain disorder
Multiple system atrophy, a degenerative disorder that destroys nerve tissue
Corticobasal degeneration, a rare neurological disease
Certain medications, such as some antipsychotics and metoclopramide
Head trauma, isolated or repeated, such as injuries sustained in boxing

But I don't see AD on the list.

There are many pathologies that can occur in the brain that are not part of any lists for laypeople because these pathologies don't have disorders associated with them. Example: pigment-spheroid degeneration of the basal ganglia.

Further, it's impossible to answer the question "what pathology in the brain definitively accounts for parkinsonism" when there are so many overlapping pathologies and there isn't a lot of research into pathologies that don't have disorders associated with them. The neuropathologist makes an educated guess.

Same thing for "what pathology in the brain definitively accounts for dementia?" Lots of pathologies and not much research into some of them.

My husband, Ron, died in February and had turned 60 2 weeks before his death. I was able to get the Neurology Department at Vanderbilt to do a brain autopsy (at no charge to me) for research. But that was because Ron was a patient there and we were local and it could be done quickly. The neurologist called me a couple of weeks ago and said that the LBD evidence was so clear and advanced that they are going to use the slides to teach about LBD in their medical school. Maybe some good will come from this after all. Cheryl D. Baird

Robin, Ron and I went to a presentation (obviously when Ron was alive) and we were told that Lewy Bodies are found in brain of all patients with Parkinsons.... just not in the same area of the brain as LBD.... not that it matters..... I just thought that was an interesting fact. Cheryl

Cheryl, Yes, that certainly is a valuable contribution to the education of medical personnel. In fact any brain tissue donated for research, no matter the outcome, makes a valuable contribution to the knowledge base.

Your husband was quite young to have advanced LBD. I am sorry for your untimely loss.

Dr. Carlos Schenck (of RBD fame) has also mentioned that Lewy bodies are present in Parkinson's patients.

Cheryl, Thank you for sharing. We have been living with LBD, we think, for several years now and although it won't make a difference in the end, I want to know IF, it is LBD. Just as our girls were checked earlier for breast cancer our children or grandchildren may benefit from knowing what their father had, or should I say, what had their father.

Fondly, Gerry

Cheryl,

Sorry for the delay in replying. I've been away on vacation and then had a big Lewy Body Dementia event this last Friday (70 people). Actually, I wasn't even aware that the Forum was live again.

I'm glad you were able to get an autopsy done on your husband's brain, and at no charge as well. Getting a verbal report via the neurologist on the neuropathology in 3 months seems OK. Have you received a written report? If not, I'd ask for one.

There's actually no pathological diagnosis using the phrase "Lewy Body Dementia." (To pathologists, the acronym "LBD" probably means Lewy Body Disease.) The pathological analysis, just as you've stated, looks at how many Lewy bodies there are in the brain and where they are. "Diffuse Lewy Body Disease" would be the most severe Lewy body pathology in the brain. The LBs are in the cortex of the brain. Parkinson's Disease is also a Lewy Body Disease. Often, people who have had PD for decades develop PDD and are also found to have "Diffuse Lewy Body Disease" upon brain autopsy.

It's nice that Ron's brain slides would be used to teach Vanderbilt medical students. Who was Ron's neurologist at Vanderbilt and do you recommend him?

I don't believe Vanderbilt has a brain bank any more (they used to) and they don't publish Lewy Body Dementia research.

Robin

Another family just received their neuropathology report, and shared the results with me. Yet again, not a single Lewy body was found in the brain, despite the LBD diagnosis during life. This disorder is *really* hard to diagnose accurately.