Baldwin man lives with rare brain disorder

Last October, Irwin Markus, of Baldwin, accidentally took the wrong Long Island Rail Road train, and ended up in East Rockaway. He called his ex-wife, Lisa Markus, because he couldn’t figure out how to get back home.

The frightening experience led Lisa to become concerned about Irwin’s cognitive ability, so she scheduled a doctor’s appointment. A month later, after several visits to a neurologist, Irwin, 58, was diagnosed with moyamoya disease, a rare cardiovascular disorder characterized by a narrowing of the blood vessels that supply blood to the brain.

Lisa quickly, and unexpectedly, became a caretaker for her ex-husband as he began experiencing cognitive decline.

“He hasn’t been able to work since the end of December, and he hasn’t been allowed to drive,” she said.

She explained that moyamoya patients are typically diagnosed with the disease after they have a stroke, but Irwin did not. Lisa described it simply as a “switch flip.”

“He’s always had a very easy-going, laissez faire kind of attitude,” she said, adding that the disease has affected both sides of his brain.

He underwent his first surgery in April, and a second one on July 13. Lisa said that the doctors were unable to predict whether his cognition would improve.

“He doesn’t even recognize our children anymore,” Lisa said.

“The cognitive decline is absolutely astounding.”

The cost of the surgeries totaled more than $20,000, and Lisa has set up a GoFundMe page to help offset the medical bills. Her goal is to reach at least $18,000.

The link to the GoFundMe is tinyurl.com/4fm72byd.

She is also hosting a fundraiser at South Shore Craft Brewery, in Oceanside, on Aug. 6, from 4 to 7 p.m. Irwin was a loyal customer of the establishment for years, and brewery employees reached out to Lisa, asking how they could help.

“He’s been a brewer recreational hobbyist since 1998,” Lisa said. “He’s a big fan of local breweries, and would go to South Shore Brewery every Wednesday.”

At the fundraiser, baskets and gift cards will be auctioned off, desserts such as cheesecakes and other baked goods will be sold, and there will be a raffle for a week in Fire Island.

“The heart of the whole purpose of this fundraiser is to keep him in the house, keep the medical bills paid, help provide clothing and food to my kids, and pray for some kind of miracle that will give us at least 50 percent of the person that we know,” Lisa said.

Lisa and her sister-in-law, Fran Markus, have been coordinating Irwin’s care. Lisa said that at this point, she just has to “keep moving forward.”

“It’s hard to watch,” she said of Irwin’s condition.

He struggles to put sentences together, so he has limited ability to communicate with his family. “It’s frustrating for him,” she said, “because you don’t know if there’s any piece of him in there.”

Although Lisa is trying to remain as optimistic as possible, she is unsure whether Irwin will ever be totally functional again, which is the hardest part, she said.

“Having to balance my children’s reactions to all of this, and have them understand that the dad they know isn’t going to be around anymore, I don’t know if that sunk in yet,” she said.

“Who knows? Maybe someday there will be something that can be done, but at the same time, it doesn’t look that way, because there’s no cure.”