Advertisement
Share
Books

Author Jamie Tyrone explores possible dangers of genetic testing in ‘Fighting for My Life: How to Thrive in the Shadow of Alzheimer’s’ in La Jolla

Jamie Tyrone holds a book signing at Warwick’s bookstore in La Jolla on July 14, 2019.
Jamie Tyrone holds a book signing at Warwick’s bookstore in La Jolla on July 14, 2019.
(Photo by Jeanne Rawdin)

Newly published author Jamie Tyrone had a book-signing at Warwick’s bookstore in La Jolla on July 14, 2019 to showcase her tome, “Fighting for My Life: How to Thrive in the Shadow of Alzheimer’s,” published by HarperCollins Publishers. The book is co-authored by renowned neurologist Dr. Marwan Sabbagh.

Tyrone, a retired nurse and former hospital marketing executive, said she decided to write the book after she learned she had a 91 percent chance of getting Alzheimer’s disease in her lifetime — something she discovered quite by accident. She participated in a genetic study, she said, because she was having neurological difficulties at the time and thought she might have multiple sclerosis . As it turned out, she didn’t have MS, but a high probability of developing Alzheimer’s.

Tyrone’s first memory of the disease was with her great-grandmother, Neva, when she was 10 years old. She writes about the experience in her book, recalling when her family drove back to Iowa and went to the nursing home where Neva lived. “She was slouched in a chair, a line of drool snaking down her chin and onto a soiled hospital gown. Her eyes were dim behind smudged spectacles, her mouth agape. She wore a restraint and reeked of urine. It was horrifying. She would live in that wretched condition — if you could call it living — for six more years.” Her great-grandmother died at 93.

Tyrone says 38 years later, the memory came roaring back. The shocking news of her own test results put her into a tailspin — she began to battle with depression and thoughts of taking her own life. Her worst fear was that her husband would have to take care of her — a fate she wouldn’t wish on anyone after watching her mother care for her mother who had Alzheimer’s and Tyrone’s own experience caring for her father who had Alzheimer’s. She was well-acquainted with the journey and didn’t want to be on the other side of it.

Advertisement

At the urging of her husband, she said she went into therapy and was diagnosed with post-traumatic stress disorder, or PTSD. It was a turning point for Tyrone.

“I came to the point where I had to ask myself — do I take the dark road or do I take the bright road? The dark road seemed too dark for me. I was only 49 at the time. I know now that if I’d had genetic counseling earlier, it could have been very different. A genetic counselor would have taken into account all my family history, what my motivation was to be tested, and many other factors that would’ve helped me decide what to do and how to react.”

Tyrone’s personal experience is what prompted her to write the book. With the popularity of DNA testing exploding in recent years, she sees the possible dangers of genetic testing only multiplying.

“With genetic tests like 23andMe and Ancestry.com, you sign an informed consent, but you get no interactive education at all. Then, eight weeks later, you get your results. But I’ve learned there are a lot of things you really need to take into consideration in genetic testing. One big one is possible discrimination — in getting life insurance, long-term care insurance and disability insurance. So think about whether or not you want this on your medical record, because once it goes on your medical record, it’s now discoverable.”

Advertisement

And sometimes, Tyrone points out, test takers have positive intentions that turn around completely.

“People say, ‘Oh, it’s going to help me change my lifestyle and motivate me,’ and that may be true. But others become so obsessed, as I did. Any time I misplaced something, I immediately thought my Alzheimer’s was starting. So the stress of knowing and wondering when it will come can outweigh the benefits.”

Tyrone says she also wrote the book to bring awareness to the extensive research being done on Alzheimer’s, including at UC San Diego’s Shiley-Marcos Alzheimer’s Disease Research Center. She urges others to participate in research studies “because the first person who’s cured of this disease will be a research participant.”

In order to raise money for a cure, Tyrone founded the nonprofit Beating Alzheimer’s By Embracing Science, or BABES. She’s also a founding member of the Women Against Alzheimer’s group.

She said she hopes a cure for the disease will come in her lifetime. “If I have 20 years left, it will happen in my lifetime. I have no doubt about that. Hopefully, the next generation won’t have to go through this. Hopefully, I will be out of a job as an author ... that would be awesome.”

“Fighting for My Life: How to Thrive in the Shadow of Alzheimer’s” is available at Warwick’s bookstore in La Jolla and other booksellers. To learn more, visit beingpatient.com


Newsletter
Get the La Jolla Light weekly in your inbox