An Idaho woman experiencing severe mood swings thought she had a brain tumor — it turns out she has early-onset dementia.
“I had so much trouble regulating my emotions. I’d become so furious over things I usually wouldn’t be angry about, like people correcting me if I said something wrong,” explained Jana Nelson, 53, to SWNS.
“My doctor doesn’t see me living into my 60s and eventually I’m going to need round-the-clock care at home,” she added.
Nelson noticed symptoms in 2017 after friends and family pointed out her personality had changed. She was repeating the same questions and sentences — she thought she had just become forgetful.
She also had trouble keeping her balance when walking, making decisions, and controlling significant changes in her mood.
Her counselor recommended she undergo neurological tests, believing she could be suffering from multiple sclerosis or a brain tumor.
An MRI scan revealed she had Stage 4 dementia, which has since progressed to Stage 5.
5% to 6% of people with Alzheimer’s disease develop symptoms before the age of 65, according to the Mayo Clinic.
“You think you’d know when something was really wrong — but I didn’t realize things were bad to this extent. I was really devastated,” lamented Nelson, an Idaho Falls mom of two children and two stepchildren.
“The symptoms and tests were so scary,” she continued. “I’m a college-educated businesswoman, why couldn’t I do simple math problems and name different colors?”
Nelson had been diagnosed with fetal alcohol syndrome at age 41, with that playing a key role in her health decline.
She underwent brain surgery in 2013 and thought she would return to her old life.
“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 to East Idaho News last year. “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 before her symptoms began, she was a “very knowledgeable person,” quick-witted, decisive and confident.
A psychology major, she ran a business managing mixed martial arts fighters.
But in 2017, she slowly began experiencing symptoms that prompted her husband, Kenny, 55, a nuclear reactor supervisor and her counselor, to encourage her to see a doctor.
“I couldn’t keep my balance and also began to really struggle with problem-solving. I just knew something was wrong,” Nelson reflected. “It also became really hard for me to calm down if I had a mood swing — which really wasn’t normal for me.”
Nelson went to the hospital for two days of intensive tests.
She was told to solve number problems, remember flashing light patterns, and name different colors — she quickly became frustrated and scared after not being able to complete them as well as she thought she would.
“The tests brought me to tears on both days,” Nelson described. “It was so demoralizing and devastating, I was scared because I knew something was wrong.”
She continued: “I couldn’t even work out how to do the numerical patterns — like, ‘You have $5 and you spend $2.50, how much have you got left’? I couldn’t draw a clock face, and I struggled to write out a check.”
She was diagnosed with a major neurocognitive disorder due to fetal alcohol syndrome — her brain had been deprived of oxygen during her traumatic birth — hydrocephalus (a buildup of fluid within the brain), and repeated concussions.
A doctor reportedly noted that she would be unlikely to live beyond her early 60s.
“The doctor even said she was surprised I was functioning as well as I was, and she’s seen people with worse symptoms at earlier stages of dementia,” Nelson shared.
Her Stage 5 dementia is typically characterized by disorientation, pronounced memory loss, and “sundowning” — confusion that worsens at night.
Nelson also complains that she has a “very limited vocabulary.”
Feeling isolated, she began researching community groups for people with dementia — but she could only find senior citizens with Alzheimer’s and not people with early-onset dementia.
She began documenting her decline on TikTok and has since discovered middle-aged people suffering from similar conditions.
She has developed a circle of friends, using their experiences as a “roadmap” of what to expect.
“It’s really rewarding to know there’s people out there who need the same guidance I need,” Nelson gushed. “It’s really nice that they just understand — and I don’t have to explain myself.”
The support comes as Nelson expects she’ll need full-time care within the next year.
“My doctors’ recommendations have been to look into resources for in-home care, and it’s probably going to happen within the next year,” she said. “We know which company we’re going to have now — so that’s ready to go as soon as I need it.”
