UPDATED September 21, 2019
Most people think of Alzheimer’s or dementia as something that happens to older people. That is not always the case. Mayo clinic says that early-onset Alzheimer's is an uncommon form of dementia that strikes people younger than age 65. While only an estimated 5% of all those with Alzheimer’s have early on-set, imagine if you, or a loved one, was one of them? Generally, we prepare for the financial costs and burdens of aging before we retire thinking about what happens as we grow old. The facts is many people require care or supervision well before they get old. Unless you have an affordable Long-Term Care policy in place you will pay for these costs. Your family will go into crisis management.
What if your doctor told you,"You have Alzheimer's"? Read this story originally published on Every Day Health. Start thinking about researching your options by reviewing the LTC NEWS resource page by clicking here.
By 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).
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
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.
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!
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’
About the Author
An LTC News author focusing on long-term care and aging.
Contributor since August 21st, 2017
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