HOUSTON - Todd Miclette from Conroe is learning to live with Lewy body dementia.
He's under the care of Dr. Paul Schulz at UTHealth Houston and Memorial Hermann.
"I think the first warning sign was that I was having difficulty doing my work in a job that I had been doing for 10 years. And I was making mistakes, and I was having trouble following the various computer programs.
Todd says he even showed up at work on his day off, confusing days of the week. Many people have never even heard of Lewy body dementia, or LBD, yet it's the second most common form of dementia.
"More than a million Americans have it. Essentially, it's a combination of Alzheimer's disease and Parkinson's disease. So, we see people getting the common Alzheimer's symptoms, getting a little forgetful, maybe getting lost, and at the same time, we'll see the Parkinson's symptoms that people, can get maybe a slower walking, sometimes a tremor, and there's a whole bunch of symptoms that fall in the category of hallucinations, delusions, that kind of stuff," explains Dr. Schulz.
Sounds all too familiar to Todd. He loves to travel and is trying to enjoy quality of life while he can, but he has to be careful.
"I have balance issues, sometimes where I just can be standing normally but just lose my balance or I will have issues where I cut corners too sharply in my house and I run into the wall with my shoulder. I have the kind of typical Parkinson's gait, where my one arm will just kind of hang to the side where it normally would be kind of swinging normally," states Todd.
Because symptoms mimic Parkinson's and Alzheimer's, people often get misdiagnosed with one or the other. Doctors didn't realize actor Robin Williams had LBD until they examined his brain during his autopsy.
"Robin Williams was a really sad case. I met his wife when she came to Houston a couple of years ago. She said that they went around to a lot of doctors to try to get a diagnosis. Number one, it's hard to diagnose but number two, the poor guy had depression to start with. That got worse. And the doctors weren't certain whether his forgetfulness was because he felt terrible or whether he had a neurologic disease," says Dr. Schulz.
Most patients with LBD suffer from depression. Todd makes sure to take medications to control the disturbing problems.
"Dr. Schulz has been very good about treating my individual symptoms because that's really all we can do right now. So, I'm on medication that helps me with my mood, keeps me from getting too agitated or irritated because Lewy body really does change a person's personality and that makes it difficult to interact socially," explains Todd.
He also takes medications to fight memory and sleep problems, which have allowed him to take on a part-time job. "It's amazing, so much better! This gives me something to look forward to several times a week and interact socially with people at work, and kind of gives me you know, makes me feel like I'm productive," says a smiling Todd.
Dr. Schulz feels a promising treatment could be available in a few years that could heal the affected cells.
"It's very exciting, really the first possibility that I've seen for something that we might use to change the course of something that Todd and other folks like him are suffering from," says Dr. Schulz.
Now, Todd waits for the day, hopefully soon, to better fight his Lewy body disease. The treatment is in Phase 3 clinical trials right now and Dr. Schulz is hopeful it could help a lot of patients.
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