If Linda Brewster wore a band aid on her forehead, then people might realize that she’s hurting. She’s got an illness that affects her memory and her ability to recall the “big words” that she used to sprinkle in her conversation during her career managing 14 early childhood education centers.
If you met Linda on the street, you might see her as any other neighbor or friend. The 57-year-old, who recently relocated with her husband to Gillette from her native California, is an affable retiree who loves the wide-open spaces of Wyoming. And like 10,000 other Wyomingites, she is living with a disease that day by day steals a bit more of her.
After retiring from her career in education, Linda was working as a human resources recruiter when, in late 2020, she accepted a recruiting assignment. The job was identical to countless others she had done. She had even written procedures manuals so that other recruiters would know what steps to take. But Linda didn’t know what to do next. She relied on her own written manuals to manage her job.
“My journey started with me documenting for three months the changes I was noticing in myself,” she said. “I couldn’t remember how to do my job. My speech was off. I was having trouble getting words out and could not pull words from my memory. This was not normal.”
After Linda shared her concerns with her family physician, and later with a neurologist, she was diagnosed in April of 2021 with shrinkage of the hippocampus region of her brain (the short-term memory part) and Mild Cognitive Impairment (MCI), an early stage of memory loss or other cognitive ability loss. She was prescribed medication to address symptoms and told to come back in a year.
“They (doctors) want to see if it goes away,” Linda said. “I probably have a better chance of winning the lottery. There is no medicine to cure MCI. Nobody told me ‘then what?’ What happens in a year? If you have a diagnosis of cancer, you have a follow-up appointment. It’s not ‘see you in a year.’”
My world was changed forever
Linda’s MCI diagnosis hit her hard for several reasons. First, it confirmed her fears about the symptoms she was experiencing. The “queen of multitasking” who loved managing students, parents and staff at her early childhood centers, presenting to city councils and training new employees, she could no longer manage more than a single thought at a time.
“My world was changed forever,” Linda said. “I had to quit my job. I was now a liability.”
The other reason for Linda’s concern was the recognition that her mother had lived with dementia. And while not related to him by blood, her stepfather had died from Alzheimer’s disease, and she had helped provide care as he experienced his decline.
The challenge of diagnosis at a young age
While there is no good age for a diagnosis of MCI or any form of dementia, a younger-onset diagnosis (pre-65) poses a number of challenges. For Linda, an important one is having people understand that her condition is a medical one, and that it is not a part of normal aging.
“My husband is very supportive, caring and loving, but it’s hard for him to understand something he cannot see,” she said. “He’s expecting the worst (from the MCI diagnosis) and not seeing that it could take me my lifetime to get there.”
Linda also is working hard to keep her MCI from progressing. She’s committed to exercising both her body and brain. She walks several miles a day, has adjusted her diet, and works to keep her mind active. But, occasionally, the changes get the best of her.
A regular visitor to Starbucks, Linda always orders the same thing. But on one visit, Linda experienced what she calls a block between her brain and her mouth, and she couldn’t give her order a name.
“I knew what I wanted – I always get the same thing – but it didn’t come out,” Linda said. “The young woman behind the counter, thinking I was indecisive, tried to be helpful, so she started rattling off different things. I stood there for a second or two. I hesitated, then I started to cry. It felt like an eternity because I couldn’t answer. I was finally able to say: ‘just give me something with caffeine.’”
Finding helpful voices
While Linda has great appreciation and respect for her doctors, she felt at a loss for what to do after receiving her diagnosis. For many people who are diagnosed with MCI or any form of dementia, the individuals usually feel alone and misunderstood. After receiving her diagnosis, which Linda likened to “being shot,” she spoke with an aunt who is a psychiatric nurse. She referred Linda to the Alzheimer’s Association’s free 24/7 Helpline (800-272-3900).
“It’s hard making that leap to pick up the phone,” she said. “That’s the first step – picking up the phone and calling. I first called Helpline just to talk, and the woman put me at ease. I told her I was just diagnosed…I need help. She said: ‘We’ve got you…we’re here to help.’”
Since that day, Linda has joined two Alzheimer’s Association support groups for people like herself in the early stages of the disease. And she has even joined the Association’s community educator program, leading an education session in Gillette for others with questions or concerns about Alzheimer’s.
“The Alzheimer’s Association is a great resource for people with cognitive decline,” she said.
Since that time, Linda has also gotten involved in Alzheimer’s research at the Cleveland Clinic and the search for a cure to the sixth-leading cause of death in the U.S. and the only leading disease without a prevention or cure.
“I’m used to being my own advocate, but this is a whole new world,” she said. “This is prime time for me since I’m in early stages, but it’s coming. It’s vital for me to be part of that research. It will help my unborn grandbabies. I saw my stepdad die of Alzheimer’s in his 80s. If I can make it to that age, I’ll be a happy camper. It’s getting everyone else there that’s important.”
The Alzheimer's Association leads the way to end Alzheimer's and all other dementia — by accelerating global research, driving risk reduction and early detection, and maximizing quality care and support. Our vision is a world without Alzheimer's and all other dementia.™ For more information, visit www.alz.org or call the 24/7 Helpline at 800.272.3900.