One Sentence Changed My Life: ‘You Have Early-Onset Alzheimer’s’
These days we all try to prevent Alzheimers early; so what happens when you find out you have it? (Photo Courtesy: Nancy Johnson)
On July 17, 2013, a single sentence changed my life forever:
“With extensive amyloid plaques on your brain, along with the results of the neuro-psychology testing, it is clear you have early-onset Alzheimer’s disease.”
Before that, I had worked as a physical therapist in many settings for more than 30 years, but in the last three, work had become more difficult. After experiencing three seizures over the course of one weekend in early 2012, I noticed a progressive decline in my memory function. Completing daily tasks, doing paperwork, and even remembering names of patients and friends took longer (or I couldn’t do it at all).
Related: Alzheimer’s at Age 30: An ‘Old-Person’s Disease’ Hits a Young Family
I Saw Myself in ‘Still Alice’
I received the book Still Alice, a story of a woman living with early-onset Alzheimer’s, for Christmas and, to my alarm, saw myself in her character. More than I wanted to admit. My husband and I (pictured below) began having “reality check” conversations after my diagnosis that led to my retirement this past December.
I’ve had to make many compromises through my disease process. Many daily tasks I can no longer perform. My husband now pays all of the bills and schedules all of our family times, vacations, medical appointments, and more. Those things used to be my responsibility, and I miss them. I’ve lost my job, my earning power, and much of the identity I have known for so long.
Related: Alzheimer’s Strikes Women Harder Than Men
On a positive note, I have found many other things that I can still do. I love to volunteer at local schools, helping third graders with their reading fluency. Their joy in learning is a bonus in my day. I also love to take time with family and friends and to travel to see the amazing wonders of this great world (Nancy is third on the right in the family photo above). You only get one chance to do this journey; I want to make it the best one I can.
Let’s Really Talk About Alzheimer’s
I, like many others who share my situation, have seen many friends go silent in my presence because they don’t know what to say to me, or they disappear from my life altogether. Alzheimer’s is a grieving process with which each of us deals differently, and that’s okay. Most people will process the situation over time and find ways to engage and encourage the individual who is affected, as well as their family. I want people to not be afraid to talk about Alzheimer’s.
Those who know me know I have nothing to hide, and I am encouraged in my journey when people genuinely care to ask how I am doing and what it is like to have the disease. More than just my friends, however, it’s time for the rest of America to start talking about it too.
Related: 10 Foods to Cut Your Risk for Alzheimer’s Disease
Every day is a gift. Ask questions, I have nothing to hide. I know I am encouraged and strengthened by others finding their journeys, as well.
Now, my mission is to advocate and get the message out about early-onset Alzheimer’s. Of the 4 million Americans living with Alzheimer’s, at least 200,000 of them have early-onset disease and, like me, were diagnosed before the age of 65. That number is steadily climbing.
We need additional funding dollars on the state and national levels to continue the current research being done to find a cure. You can lend your voice to the fight against Alzheimer’s on the local and national level. With your help, we CAN do this!
Related: U.S. Alzheimer’s Population Will Triple by 2050
Nancy Johnson, age 54, lives in Auburn, Washington, with her husband, Joel. She has three sons, Chris, Matt, and Ben. She practiced physical therapy for more than 30 years before retiring in 2014, and owns three physical therapy clinics in the Seattle area with her husband. Since retiring, Nancy fills her time volunteering at local schools and advocating for the Alzheimer’s Association.
This article originally appeared on EverydayHealth.com: One Sentence Changed My Life: ‘You Have Early-Onset Alzheimer’s’
By Nancy Johnson, Special to Everyday Health
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