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Getting Personal

Longtime Advocate for Alzheimer’s Families Faces Dementia Diagnosis

July 16, 2014
By BETSY BETHEL - Associate Life Editor , The Intelligencer / Wheeling News-Register

Peggy Baller Everly has been involved with the annual Walk to End Alzheimer's in?Wheeling since its inception five years ago. Her connection was personal as well as professional: her paternal grandmother had a dementia-related illness, and Everly spent 25 years serving local residents and their families affected by Alzheimer's and dementia.

But in recent years, the Alzheimer's Association benefit walk has become even more personal because Everly herself has been diagnosed with a form of dementia.

In her career at Family Service-Upper Ohio Valley from 1987-2012, Everly headed geriatric services and ran the state's second adult day care center serving people with Alzheimer's and dementia.

Article Photos

Walkers participate in the 2013 Walk to End Alzheimer’s at Wheeling Park.

She was the type of "super caring, grassroots social worker" who always put her clients and their families ahead of herself, said June Leindecker, Family Service executive director. In 2012, she received the Rockefeller Award from the West Virginia chapter of the Alzheimer's Association for her work.

Her years of experience gave her a keen awareness of the disease's symptoms and progression. So, in 2006, when she started having memory lapses and losing things, a red flag went up. She was a busy mom and grandmother, working full time, highly active in the Elm Grove Eagles Auxiliary and cook for the St. Vincent de Paul summer camp, among other activites. At first, she chalked up her symptoms to stress. But she had a funny feeling about it.

"I think the day I realized I needed to do something was the day I found a journal I started three years earlier." She had lost it and forgotten all about it. She also started having dizzy spells and severe headaches.

Fact Box

Key Differences Between FTD and Alzheimer's

  • Age at diagnosis may be an important clue. Most people with frontotemporal dementia (FTD) are diagnosed in their 50s and early 60s. Only about 10 percent are diagnosed after age 70. Alzheimer's, on the other hand, grows more common with increasing age.
  • Memory loss tends to be a more prominent symptom in early Alzheimer's than in early FTD, although advanced FTD often causes memory loss in addition to its more characteristic effects on behavior and language.
  • Behavior changes are often the first noticeable symptoms in bvFTD, the most common form of FTD. Behavior changes are also common as Alzheimer's progresses, but they tend to occur later in the disease.
  • Problems with spatial orientation - for example, getting lost in familiar places - are more common in Alzheimer's than in FTD.
  • Problems with speech. Although people with Alzheimer's may have trouble thinking of the right word or remembering names, they tend to have less difficulty making sense when they speak, understanding the speech of others, or reading than those with FTD.
  • Hallucinations and delusions are relatively common as Alzheimer's progresses, but relatively uncommon in FTD.

- Alzheimer's Association, www.alz.org

Ten Warning Signs

Of Alzheimer's

1. Memory loss that disrupts daily life.

2. Challenges in planning or solving problems.

3. Difficulty completing familiar tasks at home, at work or at leisure.

4. Confusion with time or place.

5. Trouble understanding visual images and spatial relationships.

6. New problems with words in speaking or writing.

7. Misplacing things and losing the ability to retrace steps.

8. Decreased or poor judgment.

9. Withdrawal from work or social activities.

10. Changes in mood and personality.

For more details on these signs, go to www.alz.org/10signs or call 800-272-3900.

By the Numbers

An estimated 5.2 million Americans have Alzheimer's disease today, including about 200,000 individuals younger than age 65.

Almost two-thirds of American seniors living with Alzheimer's are women. Of the 5 million people age 65 and older with Alzheimer's in the United States, 3.2 million are women and 1.8 million are men.

- Alzheimer's Association

West Virginia

Fourth Tuesday, 5:30 p.m.

Marshall County Senior Center

805 Fifth St., Moundsville

Third Tuesday, 5:30 p.m.

M.J. Viola Senior Center*

51 11th St., Wheeling

* Adult day care provided

Call Shirley Sisarcick at 304-232-6730 to confirm meetings.

Ohio

Fourth Tuesday, 1 p.m.

First Presbyterian Church

400 Walnut St., Martins Ferry

Third Thursday, 6 p.m.

Eastern Gateway Community College

Room 1502

4000 Sunset Blvd., Steubenville

Call the Greater East Ohio Alzheimer's Association at 800-272-3900 to confirm meetings.

Around that time, she was scheduled for an MRI of her hip. "I decided to do one for the head (too) and do it in one swoop," she said. Her doctor OK'd the test, and then called her at 8:15 a.m. on Sept. 18, 2009 - Everly recalled the exact date and time - with "good news and bad news." The good news: her hip needed replacing, which was a problem that could be fixed. The bad news, her doctor said, was that "there are changes in the right side of your brain, and I can't do anything about that."

She was 56.

"Being in the business," Everly knew where to turn for help. She made an appointment with Dr. Eric Fishman, a neuropsychologist at Wheeling Hospital.

"I went through the three hours of (memory and comprehension) testing my families had told me about all the time," Everly said, and she discovered firsthand what an unpleasant experience it was. She had to go through it twice, and Fishman diagnosed her with a form of dementia known as frontotemporal disease, or FTD, which is more common in people under 65, according to the Alzheimer's Association.

"It's FTD, but they're not bringing me flowers," Everly said.

According to the Alzheimer's Association, "the cell damage caused by frontotemporal dementia leads to tissue shrinkage and reduced function in the brain's frontal and temporal lobes, which control planning and judgment; emotions, speaking and understanding speech; and certain types of movement."

Fortunately, "the progression of losing cells is really slow," said Everly, now 60. So far, she is able for the most part to continue life as usual. Fishman is keeping tabs on her, but he has ruled out Alzheimer's for now. She goes back next year for an evaluation.

Everly said she has trouble speaking at times - "the words are still going but the mouth quits." She takes medication for her headaches, heads off memory loss by keeping paper in her pocket to write down what she needs to remember and relies on people such as longtime friend Ann Koegler for support. Koegler is a social worker and coordinator of Altenheim Resource & Referral Services in Wheeling. Koegler's mother-in-law has dementia, and after Everly's retirement, Koegler hired Everly to take care of her mother-in-law three days a week.

Mornings are better for her, she said, and she "hibernates" when she feels she is unable to effectively communicate. She stays busy babysitting her own granchildren, who range in age from 19 months to 15. She does the daily Sodoku puzzle in the newspaper, writes a letter every week to her ex-father-in-law and is helping organize and promote the upcoming Walk to End Alzheimer's, with which she has been involved heavily since Koegler and the Alzheimer's Association started the Wheeling walk five years ago.

"I look at the better part of it; I'm healthy," Everly said. Her Christian faith fuels her hopeful outlook, and she said she is "a firm believer" in the addage, "Everything happens for a reason."

Rallying around her, Everly's friends at the Elm Grove Eagles are sponsoring Peggy's Run, a motorcycle ride and benefit dinner for the Alzheimer's walk, starting and ending at the Eagles, 2153 National Road, Wheeling, on Aug. 23. The event is open to the pubic, with dinner and entertainment starting at about 5 p.m.

Part of Team Altenheim for the walk, Everly also will be involved with a yard sale from 8 a.m. to 1 p.m. July 26 at Garden Park in Warwood, Wheeling. Any team is invited to set up a table to raise money for the walk.

The Walk to End Alzheimer's takes place Saturday, Oct. 11, starting at the Wheeling Park Stone Room. Registration is at 8:30 a.m., and the event begins at 10 a.m. Koegler said the event is still seeking sponsors, as well as donors for the raffle and silent auction. For information, visit www.alz.org/wv and follow the links for the Wheeling walk.

 
 

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