KIMT News 3 - Imagine having a loved one start to experience dramatic personality and behavioral changes with no explanation.
That's the harsh reality for those dealing with an uncommon form of dementia.
It's called frontotemporal dementia, often known as FTD. It's less common than Alzheimer's, but it tends to effect younger people, usually between 30 and 70. Right now, not much can be done for those with FTD.
It's a situation Deb Scharper, of Osage, knows all too well. Scharper started dating Tom Nash when they were just teenagers.
"We got married in 1991 and we have two amazing kids together," Scharper said.
In 2008, Nash started to change.
"We started to see some personality changes, along with some behavioral changes. We didn't know what quite was going on. We thought it was going to be severe depression and we were treated with medication," Scharper said.
But Nash's symptoms only got worse. It wasn't until 2015 when they finally got an answer.
"We were diagnosed with frontoemporal dementia," Scharper said.
"It's primarily a personality change," said Dr. Brad Boeve, a neurologist at Mayo Clinic in Rochester.
"It's really a devastating illness. And to have no therapies that are even remotely effective has been very disappointing," Boeve said.
But there is hope. The National Institutes of Health is awarding Mayo Clinic and the University of California - San Francisco a grant of more than $63 million for research. The funding will help them work toward their goals in the battle against this devastating disease.
"One is to try to improve symptoms. Another is to try to slow down the rate of progression. And because a lot of these folks are in families, so in those that have a mutation but don't have symptoms, the hope is to delay the onset. Or obviously, more preferably, prevent it altogether. and there's a lot of reasons that may happen," said Boeve.
Scharper and her family are also finding moments of hope. In October, Nash was able to walk his daughter down the aisle at her wedding.
"I've been dreaming and hoping for the day. And praying that Tommy would still be around to be able to walk her down the aisle. And he was," Scharper said.
Nash will turn 49 later this week. He lives in a nursing home and he will spend the rest of his life there.
"He'll always remember us, he'll always remember the past. It's his short term memory that is gone. And you have to cue him how to wash his hands, cue him how to brush his teeth. It's the every day living that he needs cued on. But when we walk through the door, he knows who we are, so that's what's so amazing," said Scharper.
Scharper and Nash got divorced, and Scharper has since remarried. But she is still Nash's legal guardian and his best friend.
"How do you know what God meant 'til death do you part? Because I'm still with him until death do us part. He knows i'm his Deb, and he's my Tommy and I will always take care of him," Scharper said.
Scharper organizes the Crusade for a Cure golf tournament every Labor Day weekend in Osage.