It seems many young adults are eager for momentous change in their formative years. Nicole Petrie was an up and coming model and college student seeking out her dreams when that momentous change came to her in ways more difficult than most. In November of 2015, Nicole’s mother, Cheryl, was diagnosed with frontotemporal dementia, a degenerative nerve disorder of the brain that affects speech, motor function and personality.
“My mom was known for being an amazing cook,” Nicole said, “It seemed like randomly, she didn’t know how to make these recipes that she had done hundreds of times before.”
In addition to struggling with familiar cooking practices, Cheryl’s family noticed her bringing home multiples of the same item after grocery runs and experiencing confusion while driving.
“When someone is so young, in her late 40s early 50s, dementia is not something we considered,” Nicole said.
The Petrie family spent years searching for answers about the progressing change in their beloved mother figure; considering Lyme’s Disease, a possible stroke, and eventually ending up with an early-onset Alzheimer’s diagnosis. With aid from family members who also had experience with frontotemporal dementia, the Petrie’s consulted their doctors who finally diagnosed Cheryl.
Alzheimer’s affects the hippocampus, the memory center of the brain, while frontotemporal dementia occurs in the frontal and temporal lobes. The symptoms of both disorders can present similarly, but a precise diagnosis is imperative to treatment and prognosis for the patient.
In the midst of her mother’s changing health, Nicole was modeling for a small agency in Wisconsin that frequently brought her to Chicago for work.
“Because we knew something was wrong with mom, it was something that was flexible and allowed me to still be (available),” she said. “Once I graduated is when I started taking modeling pretty seriously and doing it full time and traveling and eventually landed in Miami and got signed to The Walk Collective”
Nicole’s younger sister, Sydney, was also in pursuit of her own aspirations living abroad in Paris and studying at the International Fashion Academy.
“My mom was diagnosed when I was a Junior in high school,” Sydney said, “When I left (for Paris) I had been at home with my mom a lot because my sisters were gone at college. I was ready to go, I had things I wanted to accomplish.”
Both sisters knew their parents supported their goals and have found a balance between their professional endeavors and their sometimes-demanding home life. They recall many family conversations where their father urged them to prioritize their individual paths in life.
“I didn’t want to put my dreams on hold,” Sydney continued, “Its hard being away from home regardless.”
Like most young adults during COVID-19, Nicole downloaded the popular app TikTok, which has been the topic of many news stories as of late regarding its potential shutdown in the United States.
“I had tie-dyed a shirt, and I was just trying to show off the tie-dye on the shirt,” Nicole begins, “I went to go turn around and she was there. I kind of brushed her with my hand, and she had this really cute reaction to it I thought.”
Nicole posted the video of the interaction with her mother to her fifty-some followers and awoke the next morning to over a million views.
“There were so many questions; like, is she sick? What is wrong with her?” Nicole explained.
Nicole was surprised by the general lack of knowledge about dementia and decided to post additional videos to shed light on the disorder, and what life is like for those affected by it.
“I felt there was this need to fill that hole of awareness,” Nicole said.
Even after the initial video, Nicole’s following continued to grow. As of September 22nd, she boasts over nine hundred and sixty thousand followers; many of whom are dedicated fans of her mother.
“More and more people continue to see (my videos),” Nicole said, “I’m really grateful for that. The more awareness, the better.”
Nicole especially enjoys participating in TikTok challenges with her mother, some heartwarming, some silly.
“Different TikTok challenges have gotten her to dance to different songs,” Nicole said, “We have some really amazing followers who have wanted to send her things and support her.”
A fan favorite challenge is watching Cheryl try and react to different foods and snacks. She even received a whole care packaged of snacks and candy from Canada.
“She has so many snacks in the closet right now,” Nicole said with a laugh.
Nicole has also connected with other TikTok users whose loved ones share the same diagnosis as Cheryl. She is appreciative of the communal support her TikTok has provided her and so many others.
“People who comment on my videos who also have loved ones with FTD are like, ‘I’ve never met anyone else who is going through this, I’m so glad that I found your page, I don’t feel so alone in this anymore,’” Nicole said.
Nicole’s advocacy on TikTok recently garnered the attention of The Association for Frontotemporal Degeneration; with whom she is partnering for the upcoming #FTDHotShotChallenge starting on September 28.
“This is a really exciting thing for me,” Nicole said, “From the beginning, when I started posting these videos on TikTok I’ve had the AFTD’s website linked in my bio.”
Nicole worked with representatives from the AFTD to devise a campaign for raising awareness for frontotemporal degeneration. What came of their efforts was the FTD HotShot Challenge, where participants can film themselves taking a shot of hot sauce and post it with the hashtag #FTDHotShotChallenge. Participants are encouraged to donate to the AFTD’s research efforts.
Visit Nicole’s TikTok page to share in her family’s journey here, and make sure to keep an eye out for the #FTDHotShotChallenge on your social media platforms starting September 28! You can donate to the AFTD here.