Paul Terkeltaub has gotten used to getting lost on his way to familiar places, losing his keys in the oddest places and forgetting the names of longtime clients.
“Every day there are 20 or 30 lapses that you see during the course of the day that you just learn that’s the new normal and you have to accept it,” the 55-year-old father of two says.
Terkeltaub has been living with Mild Cognitive Impairment, or MCI, for four years. He was diagnosed at age 51 after – like many patients suffering from dementia-related illnesses — he began having memory issues and knew something “didn’t feel right.”
After 18 months and numerous diagnostic tests administered by a neuropsychologist, Terkeltaub had the answer to his memory problems: MCI, a disease with no known cure that causes a decline in cognitive abilities.
These cognitive hiccups — such as problems with memory, language, thinking and judgement — are severe enough to be noticed by others, but don’t interfere with independent function.
But people with MCI also have an increased chance of developing Alzheimer’s or another type of dementia that is terminal.
“You end up in the same place, but it’s a much slower downward trend,” Terkeltaub says.
And even though he’s learned to live with his impairment – by using sticky notes, a client information system that keeps track of the people he encounters and his wife of 32 years, who fills in the gaps – he still struggles with the idea of losing his mind.
“I don’t even know how to describe the frustration and also the embarrassment about it,” the Virginia Beach resident says, explaining he had to leave the insurance investment business he had built over 30 years after he was diagnosed with MCI.
Terkeltaub had to go from being a workaholic to not working at all, but he remains active, exercising, traveling, volunteering and spending time with friends and family.
“[My wife and I], we’re having a lot of good times together, and I’ve said to the kids, if I get 10 years this way before it turns bad, then I have won big time in life,” Terkeltaub said.
One of the most difficult things he has to get used to is no longer being the one caring for his family. Upon receiving his diagnosis, he and his wife Marcy made sure their finances were in order, transferred documents to her name and broke the news to their family and friends.
“I think it’s still my responsibility to make sure everyone I leave behind is going to be fine,” he says.
Terkeltaub also spends much of his time being an advocate for MCI and Alzheimer’s awareness.
“I absolutely hate the fact that this is a hidden illness,” he says, adding sharing his story means being one step closer to erasing the stigma that comes with cognitive impairment. He says many people don’t know how to behave around people living with cognitive impairment, which leads many patients to hide their disease.
“I think that the more people talk about it and the more that it is discussed, the more funding that is going to be given to this,” he says.
He raises funds annually for Alzheimer’s research, has reached out to local politicians for their support and is active with the Alzheimer’s Association, volunteering his time by sharing his story while he still can. He plans on participating in the 2015 Walk to End Alzheimer’s in Virginia Beach on Oct. 11, and has raised a little more than $2,000 of his $20,000 goal.
