"I thought I had a brain tumour after I went from laidback to aggressive - but I have early-onset dementia and won't live to see my 60s" - video Dailymotion

Real Fix

Credit: SWNS / Jana Nelson  A mum who thought she had a brain tumour after she went from laidback to aggressive was told she has early-onset dementia aged 50 and won't live to see her sixties.  Jana Nelson, 53, first noticed symptoms in 2017, after friends and family pointed out her personality had changed.  She was repeating the same questions and sentences and thinking she'd just become forgetful.   She also felt like she couldn't keep her balance when walking, was having trouble making decisions, and suffered from severe mood swings.

Transcript

00:00Do I feel that my brain's dying? I probably won't live to see my 60s.

00:10I started feeling like the ground when I was walking was unsteady, like I was on a boat.

00:17My family started telling me that I was repeating questions, not remembering

00:25the answer or that I asked the question to begin with. Just getting confused and not understanding

00:35things that people were telling me as well as I used to.

00:46The prospect of dementia wasn't really, it didn't cross my mind. I didn't really know

00:52how affected I was. July 1st, I think of 2020, and it's the diagnosis is major neurocognitive

01:02disorder due to fetal alcohol syndrome, hydrocephalus, and repeated concussions.

01:10I'm in stage five now. At the time of diagnosis, I was in stage four. And the prognosis is,

01:20they don't really know how long before I hit the next stage. I probably won't live

01:30to see my 60s. There's just not enough brain mass and my brain is atrophying

01:36at an accelerated rate. So it's not a very good prognosis.

01:49So I don't struggle with anxiety. That's just something that turned off in my brain

01:56when the atrophy happened. Same with being scared. I very rarely feel scared. I get angry and agitated

02:05that's how my symptoms show up for me. Like whenever I run into those walls of, oh, this

02:12word's not available to me, or this task is not available. Like I can't figure things out.

02:18That's when I know that the atrophy is occurring.

02:22What I found was there was a lot of people like me that, and you know, younger than me,

02:29that are experiencing the same type of situations. They all have

02:36different types of dementia. There's people with FTD, Lewy body dementia,

02:45vascular dementia, and so on. And so I was able to work with people who were experiencing

02:52Alzheimer's. I mean, it's just, we all, even though we all have different types of dementia,

02:57we do have a lot of things in common. And it just really gives us each a sense that,

03:06you know, we're not in this alone.

"I thought I had a brain tumour after I went from laidback to aggressive - but I have early-onset dementia and won't live to see my 60s"

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