At 55, Terri Walker was too young to be diagnosed with Alzheimer's disease.
Symptoms stemming from the neurodegenerative disease normally occur after patients have reached 65.
"I would get to the top of my road, and couldn't remember where I was going," Terri said. "I struggled to find words. I called Cheetos, 'Cheezits.' April 5 was my 'Ah ha!' moment."
The day before, she was making plans to take her cousin to a winery. Her son, Jonathan, even volunteered to make reservations for her.
The next day, (April 5) she discussed her plans for the day with David Walker, her husband of 35 years. She said Jonathan had made reservations for her and her cousin, "Wasn't that nice?"
"I know," David replied. "I was right beside you."
She ran to the bedroom, crying.
"This stuff is happening, and it's not just the migraine medicine," Terri realized.
Her then-neurologist still wouldn't accept that Alzheimer's was at the root of her worst symptoms.
She returned to her family doctor, Bradley Sloan, at Jefferson City Medical Group. He connected her with Sudhir Batchu, a neurologist in the group. Among other tests he ordered, Batchu ordered a positron-emission tomography (PET scan), which showed three-dimensional images of her brain.
PET scans, when used for detection of Alzheimer's, may show amyloid plaque (a buildup of protein plaques) associated with the disease in the brain.
Called back into the doctor's office about half an hour before her grandson's 7th birthday party, Terri said she could read the diagnosis on the document across the desk from her even before the doctor announced it.
One in 10 people 65 or older has some dementia associated with Alzheimer's.
More than 110,000 Missourians have been diagnosed with the disease.
Almost two-thirds of Alzheimer's patients are women.
So the Jefferson City woman and doctors brushed off her periods of forgetfulness, her struggles to find words and her tendency to repeat herself as side effects of Topomax, an anticonvulsant drug she'd been taking for about two years to relieve symptoms associated with migraine headaches.
Terri started to cry: she has Alzheimer's.
Later, at the party, family members could see something was wrong, they just didn't know what.
"I wanted to throw up," she said. "I just looked at their faces and realized someday I was not going to know them."
She'd seen the toll the disease takes on a family.
Her grandmother had struggled with Alzheimer's; Terri had been her caregiver.
Her grandmother had wandered in the night, had mistaken outside doors for bathroom doors. She'd forgotten to eat.
She'd forgotten people.
Her grandmother died in Terri's arms.
Not uncommon in Missouri
The disease is now the sixth-leading cause of death in the United States.
Alzheimer's — a mental deterioration caused by degeneration of the brain — generally occurs in people who are 65 and older, but can show up in people who are much younger.
The condition makes different parts of the brain shrink, according to Joel Shenker, a neurologist with Missouri University Health Care. So, Alzheimer's affects people in different ways, Shenker said.
It's most often recognized as the leading cause of dementia — a general description of symptoms.
To be considered dementia, symptoms have to meet several tests.
There has to be a decline in the person's normal cognitive ability. The decline has to involve at least two cognitive domains — such as the ability to form words, solve problems, plan or create recent memories.
It has to affect the way people function — such as remembering to take medications, being able to balance a checkbook or whether they meet appointments.
And it has to have been going on for a long time, Shenker said.
"The patients who are coming in to get medical attention are coming when it's already too late," Shenker said. "The changes in the brain have been going on for a long time. Probably decades."
According to the Alzheimer's Association, a nonprofit organization which focuses on care, support and research for Alzheimer's disease, 5.7 million Americans have Alzheimer's.
One in 10 people 65 or older has some dementia associated with Alzheimer's, according to the organization's website.
Almost two-thirds of those stricken with the disease are women.
Older blacks are about twice as likely to have Alzheimer's or other dementias as whites. Hispanics are 1.5 times as likely to have Alzheimer's as whites.
In Missouri, more than 110,000 people have been diagnosed with the disease.
Many more may not even know it.
What are the signs?
The Alzheimer's Association lists 10 early signs or symptoms of the disease. One of the most common is memory loss, particularly for recently learned information. However, the memory loss may include important dates or events, repetitive requests for the same information and increasing reliance on memory aids.
Many people develop changes in their ability to create or follow a plan or to work with numbers, according to the organization's website. They may have trouble following a familiar recipe or keeping track of monthly bills.
Some find it hard to complete daily tasks, such as driving to a familiar location, managing a budget or remembering rules to a familiar game.
Others become confused by the passage of time. They may forget where they are or how they got there.
People may have vision problems — difficulty reading, judging distances or determining color.
They may have trouble following a conversation, sometimes using the wrong words for things.
They may misplace things and lose the ability to retrace steps.
Their judgment may be impaired. They may also pay less attention to grooming.
People affected by Alzheimer's may remove themselves from hobbies, social activities, work projects or sports. They become isolated.
Changes in mood or personality can be associated with Alzheimer's disease.
Terri recognized some of the symptoms.
On Valentine's Day, she knew she'd bought chocolates for her husband, David. But, like other items, they seemed to disappear. Two months later, the Walkers found the chocolates on a shelf in the garage, where Terri put them when she stepped out of the car.
Although Alois Alzheimer identified and published in 1907 a case about a woman's brain showing signs of "presenile dementia," it's only been in the past 10 years or so that research into Alzheimer's disease has stepped up, Shenker said.
In the '80s, there were fewer than 10 clinical papers published per year on the disease, he said. Fifty percent of all papers on the disease that have been published in the medical community were published in the past 10 years.
"We still don't know what gets the ball rolling — why do some go down that path earlier and some later," Shenker said. "It may be a consequence of age. There may be factors that cause them to occur earlier or later."
The efforts that are happening now are to identify who's "going on that slide" earlier than others.
Studies like that were done for conditions like coronary disease and arthritis. The trick is finding people who are asymptomatic or just a bit symptomatic, but are at a higher risk of developing symptoms.
"We need to be able to get to people in their 20s and 30s and find out if they are this far progressed beyond where you should be at this age," Shenker said.
There should be more studies like the A4 Study, he said. A4 tests whether a new treatment can prevent the development of amyloid plaques on the brain. The three-year study invites 1,000 older individuals who have normal thinking and memory function, but may be at risk of memory loss, to participate.
In the study, researchers give participants an investigational treatment drug or a placebo. The participants are to take memory tests every six months to compare changes in cognition over time.
Several treatments for Alzheimer's symptoms are available.
"We have four (medications) now that don't do nothing, they just don't do much," Shenker said. "What they do is make it so that a year later — after you've gone on the medicine — you haven't gotten as bad as you were going to become."
Doctors can't help where you are now, he said, but can help where you are going to be.
Patients can also help slow the progress, he said.
Terri and Sloan have agreed to take a holistic approach to her treatment. In addition to medications, she began eating healthier, including healthy oils and focuses on exercising.
Terri has changed medications for her migraines. She had found she was sleeping about one night a week. She now takes Restoral to help her sleep.
There are varying degrees of evidence that argue people who stay physically active, get a good night's sleep, don't smoke, don't overuse alcohol, maintain good blood pressure and eat healthy diets decrease their risk of Alzheimer's, Shenker said.
Experts are advising people to eat diets rich in fresh fruits and vegetables. They advise to not eat too much red meat, but rather consider fish.
In the time since her diagnosis — less than two months — Terri has stopped repeating herself as much, her husband said.
And she's less frustrated.
"One thing people don't talk about is the frustration. I call it the meltdown," he said. "That's kind of gone away, too."
Having services available has helped.
Extended effects, caregivers
The Alzheimer's Association offers care consultations designed to address issues specific to families living with the disease; early stage programs, which are mentally stimulating activities for people with mild memory loss; education classes; faith outreach initiatives; safety services and support groups. It also offers online support at alz.org/greatermissouri and a 24-hour helpline at 800-272-3900.
Support groups provide a place to learn, share helpful tips and meet others coping with Alzheimer's.
David Walker said in July he plans to attend his first meeting of Men Emerging as Caregivers in Osage Beach. The group meets the second Wednesday of every month to provide support and resources for each other.
He finds himself playing a new role. David, an Army veteran who lost an eye in service, is also a retired postal worker. Several years ago, he suffered a major stroke and had to relearn to walk.
He's now preparing for his role as caregiver for Terri.
The most important issue with Alzheimer's is families, parents, children and spouses must step up and provide care for people who will no longer be able to care for themselves, Shenker said.
"There was a patient I saw a few weeks ago that had early onset. Their family is stepping up to the plate," he said. "Some adult kids moved back home. They built a wing onto their home."
Bringing their beloved family member home is a step Rosy Hays and her Osage City family took. Hays' mother-in-law, Freeda Justice, lived in Ohio and began to forget things about four years ago. Freeda became concerned because she had lost her mother to the disease, so she went to a doctor. The doctor said her memory loss was simply from age.
"Everybody around her knew something was wrong," Hays said. "It was hard for the whole family to accept the fact that she was losing it."
The woman continued to drive.
To get lost.
She wasn't eating.
All the signs kept popping up, Hays said.
The family knew they had to bring 87-year-old Freeda into their Osage City home. There are three bedrooms in their home, but all are upstairs and would have been impossible for the woman to get to or from. But, they had a mud room on the main level that had two walls, each with banks of windows.
"What I did was remodel," Hays said. "We painted a cheery coral color. I put in curtains that were her style."
If not for the former mud room, they would have had to convert their dining room into a bedroom for her.
"That's how you do it," Shenker said.
There are families around that wouldn't have been willing to go through as much effort for a family member, he added. When people begin to lose cognitive abilities, they need help. They can't drive, can't manage their own medicines, can't live alone. Shame on families who allow them to, he said.
The Alzheimer's Association stresses taking care of the caregiver, too, Hays said.
Help is available
Hays has reached out to the Alzheimer's Association for help — as much as she can get. She has attended support groups. Her family has received care consultations and respite funding.
Respite funding provides financial assistance to help families with care-related assistance. It can be used to hire somebody to provide family members a break from being a caregiver. It can also be used for products, equipment, safety services and legal guidance.
The best way to get connected with support groups is to work directly with hospitals and neurologists, said Jacob Simburger, communications director with Alzheimer's Association of Greater Missouri chapter.
"Getting connected directly after diagnosis is really important," Simburger said.
There are new people at the support group Hays attends during every meeting. They are trying to do it all by themselves; they think they have no support, and they are in tears, she said.
"You're going to need extra support," she said. "You've got to reach out. I encourage people to go online or call (the Alzheimer's Association)."
Hays' mother-in-law, Freeda Justice, is in a moderate stage of dementia. But, Freeda knows everyone and knows what's going on around her.
Back in Ohio, two doctors had told Freeda she couldn't live alone at home anymore. She either had to move in with family or consider a nursing home.
A nursing home would have been too expensive and out of the question. On Friday, Freeda, who was at first resistant to moving from Ohio, said she's beginning to enjoy being in Missouri.
"I feel like I'm blessed that they wanted me," Freeda said. "I feel like they'll take care of me."
Hays plans to take Freeda out West on a trip to visit grandchildren. The family has already made up gift boxes for each family member.
The Walkers are also preparing for the future. David Walker is already watching Terri's medications list to be certain she is taking them at the proper times.
Terri has created sheets that show what her daily routines are, or when he has to do tasks for which she is currently responsible.
They're getting legal documents in order.
And they've created a team to participate in Jefferson City's annual Walk to End Alzheimer's. It is one of about 600 walks held in communities nationwide. It is the world's largest event to raise awareness and funds for Alzheimer's care, support and research.
Her team name — "Team Terri-fic" — comes from when Terri was in second grade at school and a teacher was teaching her and her friends, Lisa Knife-Bradshaw and Kelli Stiles, how to spell terrific. The teacher told them to start with Terri's name and add "fic."
The walk is shortly after noon Oct. 7 at Ellis-Porter Riverside Park Pavilion.
There have been a series of tragedies in Terri's family.
A son died a day before his daughter was born.
Her brother drowned a week before her wedding.
One son was diagnosed with Type-1 Diabetes as a child.
Her husband's stroke.
"I used to ask my grandmother why these things happen," Terri said.
"God is trying to pull you away from all the unnecessary things in the world," her grandmother said.
"I understand now," Terri said. "Politics and greed and judging people — that doesn't matter. Family is what matters."