Local mom talks about living with dementia after TikTok video goes viral

IDAHO FALLS — A 52-year-old Idaho Falls mother is living a “bad dream” and wishes she could wake up from it.

Jana Nelson is married to her husband Kenny and has two children and two stepchildren. For years, she was an independent and high-functioning person. She went to college and worked in administrative positions, owned her own air duct cleaning business and managed a women’s retail store. At the same time, she started another business managing mixed martial arts fighters.

“I was driven, focused on my kids, my career and fitness,” she told EastIdahoNews.com.

But in 2012, at the age of 41, her entire life was drastically turned upside down.

The diagnosis

Nelson found out she was born with congenital hydrocephalus, a condition where an excessive accumulation of cerebrospinal fluid is in the brain. She underwent endoscopic third ventriculostomy brain surgery in April 2013.

“I had lived 41 years not knowing anything was wrong with my brain. The rug was literally ripped from underneath me on a day off from work,” Nelson explained. “I awoke and discovered I could hardly speak or walk. Four days in the neuro department of the hospital and my life was never the same.”

Nelson said the “first hint” her brain was “unusual” was when the on-call psychiatrist came in to speak with her. He sat down and as soon as she started to speak, tears rolled down his cheeks. He told her he had four patients with brain MRIs that looked like hers — three of them were in a vegetative state and one was in a coma. The doctor had no idea how she was functioning at all, according to Nelson.

She eventually met with a neurosurgeon at the University of Utah who said she was within hours of dying. He immediately cleared his books to get her in for surgery.

Nelson thought she’d return to her old life after surgery but she was far from it. She was later diagnosed with mild cognitive impairment, the stage between the expected decline in memory and thinking that happens with age and the more serious decline of dementia. And years later, at the age of 47, she was faced with another hardship.

“I started getting frustrated with others because I couldn’t understand why they weren’t explaining things fully. I could no longer tolerate more than one person talking to me at a time. I got overwhelmed quickly and my ability to multitask diminished,” she said. “Then came the day I started forgetting appointments and daily routines. My counselor at the time pointed out I was no longer staying on track in conversations, my speech was halting more and I was having more trouble finding words.”

On July 1, 2020, she was given her full diagnosis — major neurocognitive disorder due to fetal alcohol syndrome, hydrocephalus and repeated concussions.

A local neuropsychologist explained to Nelson that her brain was affected in the womb from fetal alcohol syndrome, along with a traumatic birth that deprived her brain of oxygen for an unknown amount of time. She was missing the back portion of her corpus callosum that has millions of neurons responsible for passing messages from the left and right sides of the brain. She also suffered numerous concussions that resulted in what her doctors call ‘the perfect storm.’

“Each of us is born with a reserve that allows for us to recover from injuries and to form new pathways if something occurs and when we hit the ‘aging years.’ This is called plasticity,” Nelson explained. “Because of the trauma at birth and the birth defects my brain had, I used up that reserve upon or shortly after birth. What’s occurring now is a result of accelerated atrophy on top of reaching my ‘aging years.’”

Living with dementia

Earlier in her life, dementia was a word Nelson attributed to “old age.” Her grandma on her dad’s side died of Alzheimer’s at 94 and her uncle, also on her dad’s side, died from dementia in his 80s. She is now aware that young-onset dementia happens when symptoms begin before age 65.

“Living with dementia is a constant state of losing pieces of myself,” Nelson mentioned. “Continually adapting to things that used to come naturally (are) now difficult or impossible…I now have to rely on my husband for nearly every aspect of my daily life.”

Nelson, who doesn’t have memories like attending, writing or reading the eulogy at her brother’s funeral, said she has to constantly monitor how much energy she spends daily. Despite working with physical therapists on alignment and building strength, her muscles are still weakening in her hands, arms and legs.

“Some days I can’t get dressed by myself. I can’t tie my shoes. I need assistance in and out of the bathtub, and I can’t control my bladder,” Nelson said. “I no longer have an appetite. I forget if or what I’ve eaten. … At any given moment my brain misfires and causes me to fall or lean one way or another. I have to walk with a cane.”

She experiences hallucinations, delusions and night terrors, and struggles knowing if her dreams are reality or not. Dementia has also changed the way she’s able to express and process her emotions and facial expressions. But Nelson said the hardest part of having dementia is the toll it’s taken on her family.

“It’s stealing memories we shared together that I no longer remember. It’s interfering with the new experiences I want to have with them,” Nelson mentioned. “It’s changing who I am as a person, a mother and a wife. … I hate the thought of my family mourning the loss of me while I’m still here — physically at least.”

Going viral on social media

Nelson started documenting her journey on TikTok when she was at a point in her life where she felt isolated, misunderstood and alone.

“I’d spent hours online looking for people experiencing dementia in the way that I was and there was no one,” she explained. “(My physical therapist) told me there were people out there that would benefit from hearing my story. I had no interest in the app until she told me that.”

Nelson made her first TikTok about dementia in May 2021 with the goal of wanting her followers to see the reality of dementia. One week ago, she posted a three minute TikTok that went viral and as of Tuesday afternoon had 2.1 million views. She now has more than 80,000 followers.

“There are over 400 types of neurocognitive disorders that fall under the umbrella of dementia,” she said. “I want to help educate those experiencing it themselves, caring for someone who has it or those who have lost someone to it before it takes me. I want to empower others living with dementia to share their journey too. We need to hear their voices in order to break the many misconceptions surrounding it.”

For her followers that ask for advice, she recommends if they notice changes in themselves or loved ones to keep a journal of symptoms for a couple of months, seek doctors help to check for vitamin deficiencies, infections, thyroid or hormone imbalances and if that’s ruled out, move onto MRI and full neurocognitive testing.

What’s next?

The prognosis for Nelson is uncertain. She said there’s no statistics, case study or precedent to follow.

“My decline is occurring at an increasingly rapid rate,” she stated. “My brain is wearing thin and as my dad used to say, ‘Everyday on this side of the grass is a good day.’”

Although Nelson believes dementia is “the ultimate thief of time,” she’s learned countless lessons since being diagnosed. She’s learned more about humility, having empathy for others, the importance of compassion and the need to find inner peace, forgiveness and give her past self grace for mistakes she’s made.

“It’s made me lean into my faith of God, the afterlife and the next journey waiting for me when my time here is done,” Nelson said.