Read how Oceanside's Irwin Markus lives life with a rare disease

Last October, Irwin Markus accidentally took the wrong 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 her to become extremely concerned about his cognitive ability, so she scheduled an appointment for him to see his doctor.

One month later and after several visits to a neurologist, Irwin, 58, was diagnosed with moyamoya disease, a rare cardiovascular disorder in which the blood vessels that supply blood to the brain become narrowed.

Lisa Markus quickly and unexpectedly became a caretaker for her ex-husband when he began experiencing this cognitive decline in the fall.

“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. However, he never suffered a stroke. This felt like a “switch flip” for Lisa Markus.

“He’s always had a very easygoing, laissez faire kind of attitude,” she said about him before he had cognitive decline.

The disease is affecting both sides of his brain, she said. He underwent his first surgery in April and then a second one on July 13. Lisa Markus explained that the doctors couldn’t give any sort of indication whether or not his cognition will improve.

“He doesn’t even recognize our children anymore,” Lisa Markus said. “The cognitive decline is absolutely astounding.”

Both surgeries totaled more than $20,000, and Lisa Markus has set up a crowdfunding page to help offset the cost of the medical bills. Her goal is to reach at least $18,000. The link to the crowdfunding campaign is tinyurl.com/4fm72byd.

Lisa Markus is also hosting a fundraiser at South Shore Craft Brewery in Oceanside on Aug. 6, from 4 to 7 p.m.

The establishment holds sentimental value to Irwin Markus — he was a loyal customer to the brewery for years, and the brewery reached out to Lisa Markus asking her how they could help.

“He’s been a brewer recreational hobbyist since 1998,” Lisa Markus said. “He is 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, and a raffle will be held with the winner getting a week in Fire Island. Also, desserts such as cheesecakes and other baked goods will be sold.

“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 Markus said.

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

“It’s hard to watch,” she said about her ex-husband’s cognitive decline. “It’s frustrating for him because you don’t know if there’s any piece of him in there.”

He has struggled putting together sentences so he has limited ability to communicate with his family. Although Lisa Markus is trying to remain as optimistic as possible, she is unsure if he 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.”