Living the Alzheimer’s story

Bend woman says ‘Still Alice’ tells her story in a way she cannot

Christine H. Jones grabbed a copy of “Still Alice” from her coffee table and started to read a passage she had marked in its 19th chapter.

“‘I’m honored to have this opportunity to talk with you today, to hopefully shed some insight into what it’s like to have dementia,’' she read. “‘Soon, although I’ll know what it is like I’ll be unable to express it to you. And too soon after that, I’ll no longer even know that I have dementia.’'

Written by Lisa Genova in 2007, “Still Alice' is a New York Times bestselling book that tells the fictional story of Alice Howland, a Harvard University professor and mother of three adult children who was diagnosed with Alzheimer’s when she was 50.

It has received a lot of praise from people in the Alzheimer’s community because it paints a well-researched picture of what it is like to have Alzheimer’s — particularly when the disease strikes someone at such a young age, a rare condition known as early or younger onset Alzheimer’s. It was at the time an unprecedented first-person manner that describes what the person was experiencing as their symptoms progress.

The book was recently adapted into a movie starring Julianne Moore, who was nominated for an Oscar for her portrayal of the book’s title character.

“(This story) tells you what (having Alzheimer’s) is like from the inside out,' said Jones, 70, who loves the book because she went through a similar set of experiences as the book’s title character when she started showing signs of Alzheimer’s in her late 50s. “If I could write my story this would be it.'

The disease

Believed to be the third-leading cause of death in the United States after heart disease and cancer, Alzheimer’s disease is a degenerative neurological condition that occurs when plaques and tangles form in a person’s brain and blocks their cells’ ability to communicate with one another. The damage caused by the condition makes a person forget things and interferes with the ability to concentrate, plan and organize certain tasks. It continues until patients can no longer control their muscles, hold their heads up, swallow or smile.

According to the Alzheimer’s Association, most of the 5 million Americans who currently have Alzheimer’s started showing signs of the disease when they were in their late 60s, 70s or 80s. But in rare cases like Jones’ and Howland’s the disease can also strike people in their 50s or 60s.

“We don’t usually think of Alzheimer’s as something that happens to people in their 50s and 60s,' said Sarah Holland, field services director for the Alzheimer’s Association’s Oregon Chapter. She said this happens with only 4 percent, or 200,000 of the 5 million, people who have the disease.

Jones knew exactly what would happen when she was diagnosed with Alzheimer’s disease because she worked as a critical care nurse in West Texas and taught at the University of Texas El Paso’s nursing school. She also cared for her aunt and her father, both of whom died of Alzheimer’s, and believes her grandfather may have died from the disease as well, though he was never formally diagnosed.

When the last of her family members in West Texas died, Jones said, she moved to Central Oregon in the late 1990s so she could be closer to a cousin who lived in the area. Jones, who has lived alone since her family members in Texas died, took a job working as a nursing director at an assisted living facility in Redmond. She said it was a couple years after making this transition — a time when she was in her late 50s — that the signs of her condition started to show themselves.

“I saw what was happening to me,' she said. “I felt it and I knew it wasn’t right.'

The loss

Jones said she has lost all concept of time and cannot remember the exact circumstances that led her to suspect she might have had Alzheimer’s disease. Though, she does remember one evening when she couldn’t balance her checkbook because she forgot how to subtract numbers in her head.

“I’ve lost the ability to subtract and I’ve just recently lost the ability to multiply,' said Jones, who managed her family members’ finances when they were older and often worked with institution-sized budgets during her career. “I don’t know how to do the numbers any more.'

Over the years, Jones said she also lost her ability to read music, which is tragic to her because she sang in her church’s choir since she was a child. She also can’t remember what she read in a book or saw on TV the day after it happened, doesn’t use the stove in her apartment because she’s afraid she’ll leave a burner on, and doesn’t write anything by hand because she can’t remember how to make letters.

“My immediate memory is what seems to be going first,' said Jones, who keeps a sign on the front door of her cottage at the Aspen Ridge Retirement Community that reminds her to turn off her fireplace and lock the patio door whenever she leaves the house.

But even with her condition, Jones is able to maintain some level of independence because she has figured out how to ride the city’s bus system and uses it to get around town. She has a friend who takes her to church on Sundays and another one who comes by her house every week to help organize her medications, organize her belongings and lay out her clothes so she always has something to wear.

Jones also has an 11-year-old cat, Elsie Kate, who keeps her company, friends she can call or visit at church and at the retirement community and a pair of dry erase boards in her bedroom where someone has written little messages that remind her “God is holding my life,' “You are loved,' and “It’s okay to visit the sadness' along with the fact she needs to shower, brush her teeth and change her clothes every morning.

“While my journey has been difficult,' Jones wrote in a typed letter that she delivered to the Bulletin, “I, also, am upheld by daily reminders of the many blessings that I have.'

The movie

Because the disease’s early stages affect a person’s ability to remember things and their ability to communicate or express themselves, Holland with the Alzheimer’s Association said it is extremely difficult to find a first-person account that describes what a person experiences when their symptoms start showing up and how they manage to come to terms with their condition.

“The voice of Alzheimer’s disease as it’s being experienced is not necessarily a perspective that’s out there,' she said, explaining one of the reasons that Genova’s book is so important to her organization and the people its trying to help.

She said Genova, who worked as a neuroscientist before she started writing full-time, also spent a considerable amount of time with people who have the Alzheimer’s disease so she could write an accurate description what the fictional Alice Howland may have experienced as her symptoms progressed.

Genova also worked with the Alzheimer’s Association to craft a five-page discussion guide that comes at the end of her book. Shew has become a key advocate for people with the disease who talks about the issue on daytime television shows, news broadcasts and at events like the Oregon chapter’s 2012 McGinty Conference on Alzheimer’s, where she delivered the keynote address and met with the conference’s attendees.

Holland said she bought a several copies of “Still Alice' after Genova’s appearance three years ago so she can give it to people who are dealing with a new diagnoses of Alzheimer’s disease, or suspect they may have it, and have questions about what their future might hold.

She is looking forward to seeing the movie version of “Still Alice' because Moore put a lot of research into her portrayal of Alice Howland and spent time shadowing a member of the association’s advisory council who developed Alzheimer’s at an early age.

“Julianne Moore is great and I’m excited to see what she does,' Holland said. “Our hope is definitely that (her role in this movie) increases the awareness around Alzheimer’s disease. … Any time you raise awareness you’re going to get people involved.'

Jones is also excited to see the film because she thinks that it well describe what it is like to have Alzheimer’s in a way most people with the disease can no longer express. She feels this way about Genova’s book, which a friend gave her about six or seven years ago, even though it paints a depressing picture of the future that lies ahead.

“I know what’s going to happen,' Jones said as she glossed over passages where Alice Howland doesn’t recognize the person’s she’s become, makes plans to commit suicide and forgets her children’s’ names. “There isn’t a cure. I will die of Alzheimer’s or an Alzheimer’s related condition.'

— Reporter: 541-617-7816, mmclean@bendbulletin.com

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