Married couple doesn’t let Huntington’s Disease stop them from living

Watching a loved one battle a medical condition is never easy. One called Huntington’s Disease is taking a big toll on families. It starts with mood swings and personality changes but it gets worse. Soon, people can’t swallow, walk or talk.

Michael Dreikorn says, even if you get this, you should not give up on living.

For the last 18 years, Michael and his wife, Darlene, bonded over their love of adventure.

“We’ve been to Israel, Golan Heights. She went to New Zealand to visit me in Australia on a trip,” Michael said. “We lived life like there was a bucket list, and we just kept ticking things off.”

But about three years ago, Darlene’s behavior changed.

“We were having big issues,” Michael explained.

The couple almost split until she agreed to get help.

A neurologist ordered a DNA test, suspecting Huntington’s Disease.

“She had the test scores back, and she was reluctant to give them to me because she thought I’d leave once I had them, and that she was positive,” Michael said. “So what did I do?”

“He married me,” Darlene said.

But they knew it wouldn’t be easy.

Huntington’s is a deadly genetic disorder that impacts a person mentally and physically that gets worse with time.

While medication can improve their quality of life, it’s not cheap.

“Her Austedo is $10,000 a month,” Michael said.

“It is expensive to care for someone with HD,” said Louise Vetter, the president and CEO of Huntington’s Disease Society of America.

Vetter hopes to change that.

“HDSA is advocating for a bill called the Huntington’s Disease Parity Act, which would remove that two-year waiting period so that as soon as you’re approved for SSDI, you can take advantage of your rights to be able to access Medicare,” Vetter said.

“Many people with Huntington’s Disease don’t live five years after the diagnosis,” Michael said. “You paid into the system; you certainly deserve the system to provide the benefits that you paid into.”

“Just because you have a death sentence doesn’t mean you stop living,” Michael said.

“I made a good choice when I married him,” Darlene said.

They won’t let Huntington’s stop them from their next adventure.

DNA testing for Huntington’s is relatively new, so some people might not know they have it. If you notice a sudden change in a loved one’s demeanor, don’t be critical. Instead, get help.

MORE: Huntington’s Disease Society of America reintroduces the Huntington’s Disease Parity Act