By Dave Warner
It’s a disease that creeps up on you, one that you may have for two decades before you show any symptoms.
To this day, nobody quite knows what triggers the disease named for German psychiatrist Alois Alzheimer, who discovered brain tissue changes that are emblematic of the disease in 1906.
It’s a mystery wrapped in tangles that develop in parts of the brain, along with plaque in other parts.
But it is, of course, a very real disease, one that as many as 5.1 million Americans have now. Some estimates predict that number will skyrocket as the population ages, from 39 million over the age of 65, to 72 million in the next two decades. And that, say the experts, means that the number of Alzheimer’s victims will grow too.
For most people, the first symptoms appear after the age of 60. But that’s not true for everyone, and those with what is called early onset Alzheimer’s know that all too well.
Some 200,000 Americans, or about 5 percent of the total number of Alzheimer’s victims, find themselves with symptoms as early as their 40s.
Kathy Murray, now 59, knows a lot about early onset Alzheimer’s. The Frankford, Delaware resident and former bank executive has been struggling with the disease since she was diagnosed at the age of 56.
Or at least that’s when the official diagnosis was made.
“I was experiencing problems back as far as 1989,” Murray, who was 38 then, says. She went to her doctor, had a CT scan (computerized tomography) of her brain. The diagnosis back then: “I was having stress related issues at work.”
But Murray wasn’t sure she believed that. She felt that her speech, and her memory, was not what they had been, and she was concerned.
“I was having trouble finding the right words at presentations,” she said. Sometimes, in fact, she would use the wrong word.
“I just knew something was not right.”
She found herself having to take more “mental health” days just to stay focused. She had bank vice presidents reporting to her, and they would leave voicemails on her office telephone. She was having increasing trouble trying to understand what they were telling her.
She would cope by having her secretary transcribe the voice mail messages, and put them in writing for her.
By then, she had had the CT scan, and an MRI (magnetic resonance imaging), as well as blood work.
“I just didn’t feel like it was normal stress,” she said. “Alzheimer’s was never mentioned.”
By 2003, she was sure “there was something terribly wrong with me.”
So much so that she retired from her banking position in 2004, even though she had been offered a significant promotion.
In 2005, she opened a gourmet gift basket shop near her home, and ran it for 3 years. “That became overwhelming,” she explained.
She consulted with a neurologist and a psychologist and by 2009 she knew: she has Alzheimer’s.
She is now on a medication that is designed to slow the progress of the disease. Still, she has noticed changes in her life.
She cannot, for instance, always follow the details of the sporting activities of her grandchildren, and she knows the level of her ability to concentrate has declined.
Another example of her condition is that she sometimes has trouble following the plots of television shows or movies.
She does, however, describe the history of her disease and the story of her life in a clear way.
And she travels some, as she attends meetings of the Alzheimer’s Association early stage advisory group – but she now only travels with her husband Robert, who is also retired.
“I have to have a travel companion,” she explained.
She also limits her driving, to distances within 10 miles of her home, and has given up handling the family finances, something she finds noteworthy given her banking background.
Experts say that in many cases of early onset Alzheimer’s the victims inherited a gene from a parent that is mutated. That’s not true of all early onset cases, however.
Alzheimer’s is progressive, of course, and it can’t be stopped once it starts.
n the beginning, many victims notice they can’t remember things. As the disease progresses, victims can get lost easily, they have trouble handling money, and show poor judgment.
Alas, there is no definitive test for Alzheimer’s while the victim is alive.
Doctors, then, are left to questioning their patients about their overall health, testing memory and problem solving abilities and, as was the case with Murray, performing brain scans.
But experts have managed to describe the typical impact of the disease, beginning with trouble communicating. As with Murray, victims sometimes have trouble finding the right words, or paying attention during long conversations.
Personalities can change too. Patients can be easily upset and worried, or show unusual sexual behavior, including losing interest in intimacies with a partner.
Experts caution too that those who care for Alzheimer’s patients need to take care of themselves too.
“You may be so busy caring for the person with AD that you don’t have time to think about your emotional health,” advises the National Institute on Aging, part of the National Institutes of Health. “But you need to. Caring for a person with AD takes a lot of time and effort.”
Indeed, family members provide an estimated 80 percent of the care for Alzheimer’s victims who remain at home, according to the Alzheimer’s Association. It amounts to 17 billion hours of unpaid care.
And that’s based on the number of patients today. Many experts are predicting a rapid growth in the number of Alzheimer’s patients in the decades to come because of the aging of the American population as a whole.
“The growing number of people with AD and the costs associated with the disease also will put a heavy economic burden on society,” said the National Institute on Aging.
For her part, Murray and her husband have put their personal affairs in order, and are getting about their lives as they want to live them, traveling for one thing.
“Alzheimer’s is not going to define who I am,” she says.
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