Jana Nelson has been given the grim news she may not live to see her 60th birthday. Photo / Facebook
Jana Nelson has been given the grim news she may not live to see her 60th birthday. Photo / Facebook
Five years after undergoing lifesaving surgery for congenital hydrocephalus - a neurological disorder caused by an abnormal build-up of cerebrospinal fluid deep within the brain - a middle aged mum was given another devastating diagnosis.
Jana Nelson was known for being laid back so when she began developing a short temper and extreme mood swings in 2017, her close friends and family knew something was wrong.
On top of her out-of-character responses, the Idaho mum also became unsteady on her feet and started to repeat herself. Worried it might be linked to her previous diagnosis, she sought medical help. Doctors were concerned she might have multiple sclerosis, however, an MRI scan revealed something else.
Then 50, the mother-of-two was diagnosed with early on-set dementia, and was given the heartbreaking news that she might not live to see her 60th birthday.
With no family history of the disease, Nelson said she was “devastated” and “didn’t realise” how bad things really were.
Speaking to the Daily Mail, she said: “You think you’d know when something was really wrong - but I didn’t realise things were bad to this extent. I was really devastated.”
She added: “My doctor doesn’t see me living into my 60s and eventually I’m going to need round-the-clock care at home”.
Jana Nelson with her daughter. Photo / Facebook
Before her diagnosis, Nelson thought of herself as a “very knowledgeable person” with a vast skill set after studying psychology and managing MMA fighters.
However, she realised she needed to seek help when she noticed she couldn’t regulate her emotions and would often get irrationally angry at small things such as if people corrected her when she was wrong.
“It also became really hard for me to calm down if I had a mood swing - which really wasn’t normal for me,” she added, “I couldn’t keep my balance, and also began to really struggle with problem-solving. I just knew something was wrong.”
When she entered the hospital and underwent two days of intensive neurological tests, she found the process “demoralising and devastating” because she couldn’t do tests she assumed she would be able to complete easily such as solving number problems, remembering flashing light patterns and naming different colours.
Other tests included drawing a clock face - something she couldn’t do, and writing out a cheque.
“It made me feel stupid and really confused - I knew something was wrong but I didn’t realise the extent of it until then,” she told the news outlet.
Jana Nelson with her husband and young son. Photo / Facebook
Once tests were completed and Nelson was discharged, doctors asked her to return to the hospital with her husband, Kenny, and 20-year-old daughter before telling her the test results revealed she was suffering from stage four dementia.
“I thought ‘okay, it’s dementia - but surely it must only be in the early stages’. But it wasn’t, I have advanced dementia and a prognosis of 10 years to live.”
Nelson noted that the doctor was “surprised” she was functioning as well as she was as there were people with “worse symptoms” at “earlier stages”.
In the months since her diagnosis, she has entered stage five of the disease and is experiencing speech issues. She also has a “very limited vocabulary” and could develop disorientation, pronounced memory loss and ‘sundown syndrome’ - which worsens confusion in the night.
According to Healthline, the stage is expected to last from 12 to 18 months and those with the disease will likely need assistance with daily tasks as they can no longer live independently.
In an effort to find solace in people who are experiencing the same or similar situation, Nelson has turned to TikTok, finding a niche group of similar aged people suffering from dementia and earning over 90,000 followers along the way.
“It’s really rewarding to know there’s people out there who need the same guidance I need. It’s really nice that they just understand - and I don’t have to explain myself.”
Just last year, she went viral after explaining to a follower what it feels like living with dementia.
“At first it was not wanting to wake up. I’d sleep and I would be so tired and sleeping and being in the dream state felt so good that I would just want to stay there so then when I would wake up, I would feel extremely angry and I would be really agitated and just want to sleep.
“And then it got to the point where I thought people around me were patronising me because of the way they would talk to me, I felt like they weren’t listening good enough.
“[I found out] that I wasn’t finishing my sentences, or that I was repeating the same question and they would notice that and use a different tone.”
She continued to say as her symptoms developed she began feeling “terrified” about interacting with other people, becoming more “quiet”, and only feeling comfortable around her family.
Nelson also said in the video that was posted in February last year: “I feel betrayed by my brain because there’s things that I should remember like doing the eulogy for my brother, planning the funeral and not remembering a thing - just what I’m told”.
Currently, Nelson does not need in-house care unless she is injured or ill. However, her doctors have warned her that she will require full-time care in the next year.
Nelson said she and her partner have already decided which company they will employ to assist her when she needs it.
