Teresa Valko can see the writing on the wall. For the last 36 years of her life, at least one, and sometimes up to four, relatives from her mother’s side of the family have been living with Alzheimer’s disease at any one time. Her mother, uncle, grandmother… Eight in all.
And Teresa fears she is next.
But if she is, don’t expect her to go quietly.
The inheritance no one wants
Now 53 years of age and splitting time between homes in Durango and central California, Teresa first became aware of the Alzheimer’s plague affecting her family while she was a college student. Over the summers, she lived with her uncle and helped care for her grandmother, who was exhibiting memory issues.
There had been talk of ‘senility’ in family members previously, but this family full of scientists and medical professionals was adamant about getting an accurate diagnosis. During Teresa’s freshman year, her grandmother was officially diagnosed. Sadly, the three siblings of Teresa’s grandmother also were diagnosed, followed by her uncle. All have since passed away from Alzheimer’s disease.
At that point, Teresa and the other members of her family, including her mother, her mother's sister and family members in Teresa's generation, could see a clear picture of their potential futures.
“We realized we were all at high risk,” she said. “It was – and is – really bad and scary. I watched my mother live in absolute frozen mortal fear of developing Alzheimer’s disease.”
Sadly, Teresa’s mom, Evelyn Wilson, began to show symptoms of the disease in 2007. She’s still living in Georgia but hasn’t spoken in about five years and is unable to care for herself.
Since that time, Teresa has undergone genetic testing. Not surprisingly, she’s learned that she has the same genetic profile as her mother.
“Two generations – 100 percent of family on my mom’s side – have died from Alzheimer’s,” said Teresa. “The devastation is so complete that there must be something else at play” beyond the presence of the one copy of the APOE4 gene that the affected family members share. The APOE4 gene has been found to promote the accumulation of beta-amyloid proteins that cause characteristic plaques seen in the brains of people with Alzheimer’s.
Turning fear into action
“I get emotional thinking about it,” she said. “This is my family and I love them, and the amount of suffering is incredible. To not ever get a break…it just doesn’t stop. I want to make it stop.”
So, Teresa is doing something about it. About nine years ago, she got involved with the Alzheimer’s Association in California. She stuffed envelopes, answered phones, taught classes in the community, became a legislative ambassador and, eventually, was appointed to the local Alzheimer’s Association chapter’s board. She served as chair of the board for nearly four years.
Teresa also took her activism beyond the local Alzheimer’s Association chapter. She was a founding member of the Women’s Alzheimer’s Initiative, member of the Leadership Society for Alzheimer’s Impact Movement (AIM) and sat on the Ventura County Dementia Friendly committee.
And while Teresa and her husband, Tim, are becoming increasingly engaged in the Durango community, she doesn’t plan to temper her commitment to the cause.
“I’m in this fight for a reason and won’t step away because it’s time to travel and play,” she said.
More reasons for Teresa’s commitment
Teresa has two powerful reasons for continuing her work with the Alzheimer’s Association: her two daughters.
The oldest, 22, is beginning a career in science, like her parents, after graduating from Fort Lewis College. The younger, 18, is a freshman in college in North Carolina
“There’s the factor that I have children,” Teresa said. “I have a weird guilt feeling that I have contributed to their risk. It’s not a fun thing to carry around.”
The moment that hit home for Teresa was when her older daughter, then just a freshman in college and involved in her first serious relationship, asked her mother for advice.
“Mom, when should I tell my boyfriend about Alzheimer’s disease?” she asked. Teresa’s daughter had seen the devastation caused by the disease and watched her grandmother slowly slip away for 10 years. She knew both of her grandmother’s siblings before they died of Alzheimer’s.
“The person I spend the rest of my life with will need to be my partner in caregiving for you when you have Alzheimer’s, and then will need to be my caregiver when I get Alzheimer’s,” she said to Teresa.
“I believe my heart broke that day,” Teresa said with tears in her voice.
So, if you are a resident of Durango, expect to see Teresa Valko wearing the Association’s purple, whether at the Durango/Cortez Walk to End Alzheimer’s or leading programs in the community.
“I don’t want to spend my time and energy mourning something that hasn’t come to pass yet,” she said. “It really hits on that ‘fight or flight’ mechanism. Are you going to rise up and fight or are you going to just let it happen. In my family, it’s all fight.”
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.