Four years ago, Karen Garner received a phone call she'll never forget.
Her husband, Jim, traveling on business in Savannah, Ga., called to tell her he was looking at the same bridge that they'd seen on a recent vacation.
She hung up the phone in her downtown Hampton office and cried. The family had never been to Savannah. She couldn't convince Jim that he was confusing the bridge with one in Charleston, S.C.
"I knew something had changed in my life, and it would never be the same," Karen recalls.
The problems had started a couple of years earlier. Jim would say things that didn't make sense to Karen, now 42, and to their children, 11-year-old daughter, Frankie, and son, Bradley, 8. This led to huge, no-win arguments. His mental lapses weren't consistent, which made them more difficult to understand. "The children need consistency in diet, love, bedtime, discipline. There are so many facets of parenting that require multitasking and teamwork. Both parents have to be able to follow through," she says.
The Newport News couple went to marriage counseling, but Jim would just agree with everything she said. "We must have been very frustrating," she adds, while he nods in agreement. "Frustrating" is a word she uses a lot; she wishes there were a stronger word for what it's like trying to raise two children while living with someone who, in her words, "is slowly losing his mind."
Jim, now 50, lean and fit with classic good looks, has early onset Alzheimer's.
Though he was diagnosed in the preliminary stage, designated as "mild cognitive impairment," there is currently no treatment that can stem the progression of the neurodegenerative disease — the same disease that took the life of his mother at 61, and earlier this year, his older brother, Bruce, at 52. It is likely his uncle, grandmother and grandfather were also victims.
Early onset Alzheimer's, whose symptoms typically emerge between the ages of 40 and 50, is genetically predetermined. His children face even odds of acquiring the inherited dementia at the same age.
Though it's most likely too late for Jim, the Garners are committed to raising awareness and funds to find a cure for the disease that's wreaking havoc with their family.
How it started
At Karen's urging, in 2008, Jim went to his doctor. Jim said he had trouble sleeping, and the doctor duly put him on anti-depressants, changing the prescription several times over the course of 18 months, to no avail. The doctor then referred him to a neuropsychologist, who conducted cognitive testing over a three-year period, and to a neurologist who proved "ill-equipped," as Karen dubbed it, to handle their situation.
"This is a very slow process. They don't officially tell you; it's not like a heart attack where you have the date. It slowly comes out that it's not this, this and this," said Karen. "I knew before the doctors did."
Patricia Lacey of the Southeastern Virginia Alzheimer's Association said it's not uncommon for early onset to be misdiagnosed initially.
"It seems out of the realm of possibilities for someone so young. For older people, Alzheimer's is the first thing you think of when someone starts forgetting things."
Yet the greatest progress in Alzheimer's research has been in diagnosis, rather than treatment, and it's now possible through new brain imaging techniques and a spinal fluid test to identify the disease with some certainty. Jim was the first person to have the cerebro-spinal fluid test at Riverside to check for Apoe4, a tell-tale genetic marker. A fault in the test's handling, however, rendered it inconclusive.
Then, in 2011, he went to the National Institutes of Health for comprehensive diagnostic trials. In an exhaustive battery of tests, the NIH ruled out everything else and diagnosed him with "mild cognitive impairment," or the precursor to Alzheimer's; they used the new Pittsburgh Compound-B test in a PET scan, along with blood work and cognitive assessments to determine that he is, as the NIH letter stated, "considered by most in the research field … at high risk of developing Alzheimer's."
How their lives changed
His illness has affected everything, from the family's daily routines to planning for the future.