Cindy Jacklich, who has always enjoyed poetry and making silly rhymes, put her feelings about being diagnosed with Alzheimer's on paper. Then she recorded herself reading her poems and put the readings on CDs, which she has sold to raise money for the Alzheimer's Association.
The feelings she expresses on the CD offer insight into what it's like for people diagnosed with dementia.
"I'm terrified"
"My spirit is strong. I fight to hang on, knowing eventually I'll lose my memories to Alzheimer's disease.
I'm terrified of losing my memories. Where will they send me when they can no longer care for me?
Will anyone still love me?
Will anyone come to visit with me?
Will there be anyone who will care about me?
I'm terrified of being lost in the world of Alzheimer's, not knowing family, not knowing where I am or who I am.
I'm terrified this disease will separate me from my family.
Please don't forget who I was.
I may be here locked in the world of Alzheimer's unable to show my love. I am still the one who loved you as your wife, your daughter, your sister, your friend.
Please don't stop loving me."
Treasure Valley Memory Walk in Veterans Memorial Park Sept. 6.
Southeastern Idaho Memory Walk in Pocatello Sept. 13.
Magic Valley/Mini Cassia Memory Walk in Twin Falls Sept. 20
Wood River Valley Memory Walk in Ketchum/Sun Valley area, TBD
Alzheimer's disease surpassed diabetes as the sixth-leading cause of death in the United States in 2006, according to the Centers for Disease Control and Prevention.
People 65 and older are at the highest risk for Alzheimer's, though more and more individuals in their 30s, 40s and 50s are being diagnosed.
Ten million Baby Boomers will develop Alzheimer's or other forms of dementia in the coming years, according to studies.
In Idaho, about 26,000 people age 65 or older will have Alzheimer's in 2010, a 37 percent increase over 2000, according to a 2008 Alzheimer's Association report.
Researchers have developed drugs to treat some of the symptoms of the fatal disease but have yet to find a way to slow or stop it from destroying brain cells.
"I continue to remain optimistic, just because there are so many drugs coming down the pipeline," said Neil Buckholtz, chief of the Dementia of Aging Branch of the National Institute on Aging. "Eventually there will be one that does modify disease progression. We'd really like to prevent the onset of the disease entirely."
For every 10,000 drugs synthesized, one will reach market, said Troy Rohn, a Boise State University researcher who studies neurodegenerative diseases. The process takes 10 to 15 years and costs hundreds of millions of dollars. "It's a longshot," he said.
There are dozens of Alzheimer's drug trials going on, though none are in Idaho.
Rohn told the Jackliches about a phase III drug trial in Salt Lake City run by Elan Pharmaceuticals. Cindy Jacklich qualified to be part of the trial.
"When you've made it to phase III, you've shown the drug has some kind of an effect," Rohn said. "Now you're testing it on a large-scale ... I'm very optimistic this drug is going to be effective."
It could be at least 2011 before the drug could be used, if the trial is successful and if the Food and Drug Administration approves it.
It is a double-blind study. That means that neither Jacklich nor those administering the drug know whether or not she's getting the drug or a placebo.
1. Memory loss. Forgetting recently learned information is one of the most common early signs of dementia. A person begins to forget more often and is unable to recall the information later.
What's normal? Forgetting names or appointments occasionally.
2. Difficulty performing familiar tasks. People with dementia often find it hard to plan or complete everyday tasks. Individuals may lose track of the steps involved in preparing a meal, placing a telephone call or playing a game.
What's normal? Occasionally forgetting why you came into a room or what you planned to say.
3. Problems with language. People with Alzheimer's disease often forget simple words or substitute unusual words, making their speech or writing hard to understand. They may be unable to find the toothbrush, for example, and instead ask for "that thing for my mouth."
What's normal? Sometimes having trouble finding the right word.
4. Disorientation to time and place. People with Alzheimer's disease can become lost in their own neighborhood, forget where they are and how they got there, and not know how to get back home.
What's normal? Forgetting the day of the week or where you were going.
5. Poor or decreased judgment. Those with Alzheimer's may dress inappropriately, wearing several layers on a warm day or little clothing in the cold. They may show poor judgment, like giving away large sums of money to telemarketers.
What's normal? Making a questionable or debatable decision from time to time.
6. Problems with abstract thinking. Someone with Alzheimer's disease may have unusual difficulty performing complex mental tasks, like forgetting what numbers are for and how they should be used.
What's normal? Finding it challenging to balance a checkbook.
7. Misplacing things. A person with Alzheimer's disease may put things in unusual places: an iron in the freezer or a wristwatch in the sugar bowl.
What's normal? Misplacing keys or a wallet temporarily.
8. Changes in mood or behavior. Someone with Alzheimer's disease may show rapid mood swings - from calm to tears to anger - for no apparent reason.
What's normal? Occasionally feeling sad or moody.
9. Changes in personality. The personalities of people with dementia can change dramatically. They may become extremely confused, suspicious, fearful or dependent on a family member.
What's normal? People's personalities do change somewhat with age.
10. Loss of initiative. A person with Alzheimer's disease may become very passive, sitting in front of the TV for hours, sleeping more than usual or not wanting to do usual activities.
What's normal? Sometimes feeling weary of work or social obligations.
Source: Alzheimer's Association
WHERE: 1111 S. Orchard St.,Suite 200, Boise, ID 83705
PHONE: 208-384-1788 or 208-385-7191
HOURS: 9 a.m. to 5 p.m.
E-MAIL: suzette.albers-tunnell@alz.org
Over the past year, Cindy Jacklich has become increasingly self-conscious about going out in public. Alzheimer's disease has muddled her thoughts and slowed her speech.
The effects of the disease are noticeable, although the disease itself is buried deep in her brain. Few understand that Jacklich's confusion and speech problems are two symptoms of a disease that afflicts more than 5 million Americans. She sometimes draws painful stares and humiliating snickers when she's out and about with her husband, Tony.
"They think I'm drunk or on drugs," says Cindy, who speaks haltingly at times and often asks Tony for help in remembering things.
The feisty 56-year-old former business owner and manager hasn't let Alzheimer's - or the embarrassment it causes her - keep her holed up in her Nampa home. She visited hundreds of valley business this past spring, raising $18,000 in donations for Alzheimer's research and support services.
"I say let's stop complaining about it and get up and do something," Cindy Jacklich said. She said having something to work for puts a smile on her face.
"I live for today. If I wake up tomorrow the way I am today, I'm happy," Jacklich said. "I've got things to do."
'IF I CAN DO IT, YOU CAN DO IT'
Fundraising has become a full-time job for Jacklich and her 68-year-old husband, who drives her from business to business.
"Tony says, 'I'm tired, I'm tired,' " Cindy says. "I tell him, 'Oh, shut up, if I can do it, you can do it. Quit complaining.' ... He keeps going. He goes all day with me."
Cindy Jacklich set a goal of raising another $7,000 by September for the Memory Walk, an annual fundraising event for Alzheimer's research. She wants the event to be Idaho's largest ever.
"That's the most important thing in my life right now," Jacklich said. "I want people to walk with us."
Jacklich's personal campaign to raise awareness and money for groups that support families and caregivers in Idaho is not lost on those working in the field.
"That's what's needed - somebody really focused. It's amazing that someone with Alzheimer's disease is out there making it happen," said Suzette Albers-Tunnell, director of the Alzheimer's Association of Greater Idaho. "It gives her hope and a purpose. We all need a purpose. ... She's exceptional, and her husband is a wonderful support."
The Jackliches want to increase the staff at the Boise-based Greater Idaho Chapter of the Alzheimer's Association, which is a resource for families in 35 counties. Albers-Tunnell is the only full-time staff member.
"I do all the grant writing, fundraising, annual celebrity benefit, member walks across the state," said Albers-Tunnell, who has headed the chapter for nearly four years. "I work around the clock, pretty much. I work weekends as well."
In the next few years, she's hoping to add a development director, program director, and someone to answer the phones full time.
The chapter has 25 support groups that are run by trained volunteers.
"So many people are caring for loved ones in their homes. They don't really have the information they need," Albers-Tunnell said. "That creates tension and fear. The more information they have, the less fearful they are."
This isn't the first time Alzheimer's has touched Tony Jacklich's life. His mother began to have symptoms of dementia when he was in his early 20s.
His wife doesn't like to hear about that. The Jackliches choose to be optimistic about the future.
"If Cindy and I sat in the chair and took Alzheimer's as a death sentence, we wouldn't have a chance," he said. "You have to have a direction in your life, or you're lost."
MEMORY GETS WORSE AND WORSE
Cindy Jacklich started noticing she had memory problems several years before she was diagnosed with Alzheimer's.
She was working as manager of a mini-storage business that they owned in California when she started noticing that she was doing things repeatedly.
"I'd be counting money, and I'd have to start over," she said.
That was odd for Jacklich, who had previously worked as manager of five mini-marts and a bait-and-tackle shop. She and Tony later started their own vending machine business and ran it together for 13 years.
She never before had trouble staying organized or doing tasks repeatedly because she'd forgotten she'd already done them.
She also noticed that she was having concentration or memory lapses when she was playing cards.
"I would forget what I was doing with my card," she said, noting that it usually elicited laughter because people thought she was being funny. "I kept telling Tony, 'I don't know what's wrong with me. I need to go see someone.'"
The couple moved to Nampa about three years ago. Her memory problems worsened.
"I'd say, 'OK, I want a cup of coffee.' I'd walk in there (kitchen), and I had no idea why I was there," Jacklich said.
She'd leave the room, remember what she was after, return to the kitchen and forget again when she got there.
Things she'd always taken great pleasure in, like cooking, began to be a problem.
"I'd want to cook dinner, but I don't know what I'm doing," she said, admitting that she began to fear being alone.
Last year, she began to have difficulty speaking, so she went to the doctor. After a battery of tests, she was diagnosed with Alzheimer's disease.
But the doctor didn't come right out and tell her. Cindy said she found out when she read the label on the medicine prescribed to treat her symptoms.
"I was sitting in the car," she said. "I knew I was having problems, but I didn't think it was that."
Both Cindy and Tony were down in the dumps for a month. They went to California to visit Cindy's mother and while there went to one of the chapters of the Alzheimer's Association, which provided some counseling on coping with the disease.
'THE HAPPIEST YEARS OF MY LIFE'
Cindy Jacklich has good days and bad days. She tries to stay positive by setting goals and working hard to meet them.
She's hopeful that the drug trial she's in now will help her. If it doesn't, she's optimistic that it will help someone else.
"The last three years have been the happiest years of my life," she said. "I've met so many wonderful people. I wouldn't change that for anything."
Sassy, a new golden retriever puppy, is a joyful addition to the Jacklich home. Cindy said the pup became an Alzheimer's Association mascot (she has the vest to prove it), and she plans to train her to be a therapy dog who can go into assisted living facilities.
"I want to her to be able to go to rest homes and see her put a smile on their faces like she does me," she said.
Katy Moeller: 377-6413
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