Lewy body dementia often mistaken for Parkinson's, say local doctors.

NOVEMBER 7, 2015  

BY JOHN PETRICK

STAFF WRITER | 

THE RECORD

AP FILE PHOTO

Robin Williams with wife Susan, who this week revealed the actor was suffering from Lewy body dementia.

Signs of Lewy body dementia:

* Visual hallucinations

* Rigid muscles

* Sleep difficulties

* Depression

* Cognitive problems

Source: Mayo Clinic

It is the second most common form of dementia after Alzheimer's, say local neurologists – and perhaps the least known.

That is, until this week, when the widow of actor Robin Williams revealed the late star was suffering from Lewy body dementia, in which the onset of hallucinations is swift and the nightmarish spiral to certain death is even swifter.

The mental gymnastics Williams' mind exercised in creating characters both on stage and screen probably couldn't hold a candle to the cruel tricks Lewy would play on him in the end, judging by the way North Jersey neurologists describe the disease, which sounds like a sped-up version of Alzheimer's.

"It is very debilitating, very misunderstood, and very misdiagnosed," says Dr. Monica Chavez, attending physician of internal and geriatric medicine at Holy Name Medical Center in Teaneck.

In Lewy body dementia, protein deposits called Lewy bodies develop in nerve cells in regions of your brain involved in thinking, memory and movement (motor control). "The patients have similar symptoms to that of Parkinson's disease, in the very beginning – tremors, falls, stiffness in the body. Then come early onset hallucinations – very fearful hallucinations. The person gets paranoid. Depressed," Chavez says.

One of the biggest problems is that Lewy body dementia will often be misdiagnosed as Parkinson's at first, according to Chavez. Medications used to treat Parkinson's, however, actually inflame the symptoms of Lewy body dementia. So if you are misdiagnosed and treated for Parkinson's, it can make things much worse.

"Parkinson's medications are absolutely deleterious for this type of dementia. So it is very important to get a proper diagnosis early. A bad diagnosis can be even more stressful for the patient and the caregiver … Unfortunately, there is no one definitive test. The only one is at autopsy, when they can find an abnormal protein in the brain."

It was only at autopsy that Williams – who had been diagnosed with Parkinson's months before his death — was confirmed to have had Lewy body.

His wife, Susan Williams, went public with the diagnosis this week, saying that it wasn't depression that drove him to suicide as many thought, but Lewy body. She said both she and Williams were painfully aware he was suffering from something more than just Parkinson's, based on his increasing mental anguish and rapid loss of certain motor skills. Doctors just couldn't quite put their finger on it, she said, noting she forgave the comedian for killing himself, given what the disease was doing to him.

"It's not easily diagnosed. But we are getting better at ordering newer imaging studies, and identifying certain clinical features in real life. We're learning more about it over time," says Dr. Gary Alweiss, director of neurology at Englewood Hospital and Medical Center. "The diagnosis is frequently made while the patient is still alive but not upon the first few visits. It has to play itself out."

Ultimately, those with Lewy body die the way people with Alzheimer's do – either because of being unable to swallow, or from urinary tract infections, pneumonia or other such complications caused by sheer immobility, according to Alweiss. The only difference is that while Alzheimer's is a gradual decline, Lewy body is much faster, often killing in a matter of just a few years, according to experts.

About 1.4 million people in the United States are believed to have the disease, according to the non-profit Lewy Body Dementia Association of Lilburn, Ga. Though much rarer than Alzheimer's, Alweiss says: "I would encourage anyone who thinks they have dementia to see a neurologist. There are some dementias that are reversible. And if they aren't, we have medications that can at least treat your depression, we can medicate your anxiety, and there is help we can give to the caregivers," he says.

"Though the ultimate prognosis for someone with Lewy body is dismal, we can make the person a lot more comfortable and functional while they are dealing with the disease."

Email: petrick@northjersey.com

http://health.einnews.com/article/295705775/qIFztMjJywfxyvuy