From Dailymail.Com’s Health Reporter
15:32 January 26, 2024, updated 15:56 January 26, 2024
- When laid-back Jana Nelson became cranky, her family knew something was wrong.
- An MRI scan revealed that he had dementia at the age of 50, despite no family history.
- Read more: 8 lifestyle factors that indicate you’re aging well
My mother, whose personality suddenly changed in her late 40s, was diagnosed with early-onset dementia.
When the famously laid-back Jana Nelson started having a short temper and extreme mood swings in 2017, her family and friends knew something was wrong.
The mother of two from Idaho suddenly felt unsteady on her feet and started repeating herself. Amid concerns that she might have MS, she was advised to undergo a brain test.
However, an MRI scan revealed that he had dementia at the age of 50, despite no family history, and was told that he would probably not live to be 60.
“You know when something really goes wrong, but I didn’t know it was this bad,” said Nelson, who can no longer work. I was really shocked.
“My doctors don’t expect me to live into my 60s and I will eventually need 24-hour care at home.
“The symptoms and the tests were so scary. I’m a college-educated businesswoman. Why couldn’t I do simple math problems and name the different colors?”
Although only about 3% of dementia patients develop dementia before the age of 65, the loss of memory can be devastating.
Before her diagnosis, Nelson described herself as “a very knowledgeable, resourceful, decisive person, and someone who speaks her mind.”
Confident in her abilities, she studied psychology at degree level and ran a business managing mixed martial artists.
But in 2017, she gradually began experiencing a series of symptoms, and her husband, Kenny, 55, a reactor supervisor, and a counselor recommended she see a doctor.
She said: “I had a really hard time controlling my emotions. I would get angry over things that I wouldn’t normally get angry at, like people correcting me if I said something wrong.”
“I also found it really hard to calm down when I was moody, which wasn’t really normal for me.
“I couldn’t keep my balance and started having a really hard time problem-solving. I just knew something was wrong.”
Although there was no history of dementia in her family, Nelson was diagnosed with fetal alcohol syndrome in 2013 and was thought to be at risk for future health problems.
The condition is caused when babies are exposed to alcohol in the womb and is thought to increase the risk of chronic health conditions for a myriad of reasons, although the long-term effects are still being studied.
Following family feedback, Nelson, the mother of a daughter and a son, went to the hospital herself, where she underwent two days of intensive neurological testing.
She was asked to solve number problems, memorize flashing light patterns, and name different colors. However, she was not able to solve the problem as she expected and she quickly became frustrated and scared.
Her doctor also sent her for an MRI, hoping the scan would find something wrong.
“I had tears in my eyes both days during the test,” Nelson said. “It was very demoralizing and devastating. I was scared because I knew something was wrong.
“There were so many different things. There was a little pegboard and you had to take a key out and fit it into the right shaped hole, and you had to do it as quickly as possible.
“Then they made me stand in front of a computer where colors and words were flashing and I had to remember the patterns.
“I couldn’t even figure out how to calculate the number patterns. Like, ‘You have $5, you spend $50 on $2. How much do you have left?'”
“I couldn’t draw a clock face and had trouble writing a check.
“It made me feel stupid and really confused. I knew something was wrong, but I didn’t realize the extent of it until then.”
Nelson’s doctor asked her to return to the hospital with Kenny and her 20-year-old daughter, where she was told an MRI and tests showed she had stage 4 dementia.
She was told that she was unlikely to live into her early 60s.
She said: “I thought, ‘Okay, it’s dementia,’ but I’m sure it’s only in the early stages.”
“But that wasn’t the case. I have advanced dementia and have 10 years to live.”
“My doctor even said she was surprised that I was functioning as well as I used to. She had seen people with much worse symptoms in the early stages of dementia.”
Her symptoms have continued to progress and she now experiences a speech impediment with a “very limited vocabulary.”
Symptoms have now progressed to stage five and typically include symptoms such as disorientation, significant memory loss, and “sunset syndrome,” meaning confusion that worsens at night.
Feeling isolated, Nelson started looking into community groups for people with dementia. However, they were only able to find elderly people with Alzheimer’s disease, and had trouble finding people with early-onset dementia.
She started documenting her decline on TikTok and has since discovered many middle-aged people suffering from similar types of dementia.
Through this, she found a group of friends and uses their experiences as a “roadmap” for what she expects from herself.
Furthermore, she added: “My therapist encouraged me to start my own TikTok. I didn’t want anyone else to feel as isolated as I felt at the time.”
“It’s really rewarding to know that there are people out there who need the same guidance that I need. I’m just really happy that they understand – and I explain it myself. There’s no need.”
Until now, Jana only required in-hospital care for injuries or illnesses, but doctors believe she will need full-time care within the next year.
She said, “Doctors are recommending that we consider resources for home care, and that will probably happen within the next year.”
“I already know which company I’m going to join, so I’m ready to respond when I need it.”