GREEN BAY, Wis. — Dementia is not a disease. It’s a term that covers many types of cognitive impairments that affect memory, communication and behavior.

The most common cause and form of dementia is Alzheimer’s disease.

But one man in Green Bay is working to raise awareness about a lesser-known form, called Lewy body dementia.

What You Need To Know

  • Gary Schmidt has Lewy body dementia

  • It impacts his memory, decision-making and ability to solve problems

  • Lewy body dementia has also caused him to have sleep disorders and hallucinations

  • Schmidt wants others to know there's life after diagnosis

Gary Schmidt has lived with Lewy body dementia for the past four years. It impacts his memory, decision-making and ability to solve problems. It has led to motor and muscle weakness and rigidity. It also can cause sleep disorders and hallucinations. 

“I was bringing stuff inside from outside into the garage,” said Schmidt. “Sat down on a flowerpot and a mouse ran from underneath the shelves to me, rather than away from me and under the pot. I picked up the pot and there was no mouse. That was my first hallucination.” 

The Lewy Body Dementia Association said this condition impacts about 1.4 million people in the United States. Schmidt said navigating it has been isolating.

“I have dementia but yet I’m functioning,” said Schmidt. “I’m talking to you. I’m sitting in a chair rocking. Sometimes I drool. A lot of times my nose runs, but I’m not in a nursing home.” 

Schmidt said it’s difficult to lose some of his independence, but he leans on his family and faith to get by.

“I can’t drive and go to Ace Hardware and talk to the checkout,” said Schmidt. “I can’t drive to the grocery store and just walk around. I could walk there if I had the energy to do it, but I don’t have that energy anymore.” 

Schmidt was used to an active career and lifestyle. He spent nearly 40 years as a family medicine doctor. Now retired, he said his goal now is to help people with Lewy body dementia by raising awareness.

“This is what I’ve done all my life is advocate for people, and something I want to do,” said Schmidt. “Dementia is so feared by people and so unknown. Lewy body dementia, as one professor described it, is one of the largest illnesses or diagnoses that most people don’t know about it. I want people to know about it.” 

He said he wants others to know that there is life after a scary diagnosis and you can still live a full existence.

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