By Jamie Ten Napel Tyrone
Have you ever wondered about your genetic risk for Alzheimer’s disease?
I never thought of myself as an author, my poor grades in spelling and grammar as a child probably had something to do with that! So, being here and sharing my genetic journey by authoring Fighting for My Life—How to Thrive in the Shadow of Alzheimer’s was the furthest thing from my mind. But that all changed in 2009 when I inadvertently discovered that my genetic status puts me at a 91 percent chance of getting Alzheimer’s disease.
As I opened my test results with complete naivety and lack of genetic counseling—much like the experience with direct-to-consumer companies like 23andMe—I was informed that I have two copies of the ApoE4 gene that will forever shadow my life.
Even though I have a strong family history of Alzheimer’s disease, I was blissfully in healthy denial. I was totally blindsided, but I took a leap of faith hoping that my story will help others decide how they will live their life’s journey through Alzheimer’s and to help them decide if genetic testing is right for them. And thank goodness for spell check!
After being counseled not to disclose my genetic status due to possible discrimination (especially with long-term care, life and disability insurance), the lack of counseling in obtaining my genetic information, and possible Alzheimer’s future, I fell into a deep depression and even considered leaving this earth.
As destiny would have it, I met world renown Alzheimer’s researcher Dr. Marwan Sabbagh. He impressed upon me that my story could change people’s lives and that my story needed to be told. We discussed the value of genetic counseling when embarking on one’s journey of deciding if one wants to know their genetic status.
He shared with me his expert knowledge and great medical advice on how I can decrease my risk for Alzheimer’s disease. Even though there is no prevention or cure at this time, there is hope. We are making great strides in understanding Alzheimer’s disease better and realizing the power of living a healthy lifestyle. I am blessed that Dr. Sabbagh chose to be my co-author.
When I look back at my life and calculate how much energy I put into planning my career, my marriage and my life, and how things can change at any moment, I am reminded of a quote by Marianne Williamson: “Ego says, ‘Once everything falls into place, I’ll feel peace.’ Spirit says, ‘Find your peace, and then everything will fall into place.’
I have been blessed to realize that God gives us gifts in packages that we may not recognize unless we choose to open them! He gave me a beautiful gift of purpose. Every day I wake up knowing that my life story can help others navigate their own journey of discovery, to help them make that decision—giving them the pros, cons, and pitfalls of genetic testing—and to live a full life no matter what they may decide.
I have found my peace!
Bio
Jamie Tyrone is an author, retired Registered Nurse and hospital marketing executive, and Founder/CEO of B.A.B.E.S. – Beating Alzheimer’s by Embracing Science, a non-profit 501(c)(3) charitable organization she created after she learned of her 91 percent lifetime genetic risk of succumbing to Alzheimer’s disease. Only two percent of the population has this genetic status which motivated her to become a research volunteer and a dedicated advocate for the needs of research—increased funding and research participation.
Jamie Tyrone envisions a world without this cruel disease that destroys memories and often shatters families. She is a founding member of WomenAgainstAlzheimer’s and has been honored with a place on Maria Shriver’s “Big Wall of Empowerment” recognizing those who are architects of change.
Jamie’s family history with Alzheimer’s disease is documented in the CNN award-winning film Filling the Blank, produced by Filipe Barrel. Her story was also highlighted in the BBC documentary Curing Alzheimer’s. Her personal experience of living with this genetic status has been a feature story in the New York Times, a cover story in the Washington Post, featured in the daily newspaper San Diego Union Tribune, and included in a PBS News Hour segment discussing how Alzheimer’s disease researchers seek better prevention with early detection. Her book Fighting For My Life—How to Thrive in the Shadow of Alzheimer’s was released by HarperCollins May 7th, 2019.
Connect with Jamie Ten Napel Tyrone
Website – www.alzbabes.org
Jamie Ten Napel Tyrone – Personal Facebook page
Public Figure Facebook page
Beating Alzheimer’s By Embracing Science Facebook page
Purchase Jamie’s book on Amazon.
One Response
Wow, Jamie! You are amazing and strong!! I have chosen not to be tested, but am in awe of your courage. You are in my prayers.