00:00 I started feeling like the ground when I was walking was unsteady, like I was on a boat.
00:06 And then my family started telling me that I was repeating questions,
00:16 not remembering the answer or that I asked the question to begin with.
00:26 And that just getting confused and not understanding
00:32 things that people were telling me as well as I used to.
00:37 It was my actually my counselor that I'd been seeing for a few years and
00:47 she started noticing things and
00:54 and that the prospect of dementia wasn't really, it didn't cross my mind. Maybe it was in the back
01:03 of her mind, but she didn't tell me at the time. Just that something besides my hydrocephalus was
01:11 happening. And so she at first wanted me to get the MRIs and the blood tests. And then when those
01:19 all came back stable or normal, she suggested I go see this neuropsychologist.
01:29 I thought I had an awareness of what I was capable of doing. And each time that I would do something
01:38 and not be able to do it, it just became one more thing that I realized I wasn't able to do.
01:44 So it was really, it took me completely off guard and
01:49 just made me feel like I didn't really know how affected I was.
01:56 I got the diagnosis in July, July 1st, I think of 2020.
02:11 And it's the diagnosis is major neurocognitive disorder due to
02:17 fetal alcohol syndrome, hydrocephalus, and repeated concussions.
02:23 And I'm in stage five now. At the time of diagnosis, I was in stage four.
02:39 And then I went back for retesting, reassessment, just because the first initial one was a baseline.
02:48 And then in 2022, I went back to see if I progressed or if it stayed
02:54 the same and it's continued to progress. So now I'm in stage five.
03:08 And the prognosis is, they don't really know how long before I hit the next stage.
03:16 But she did say that I probably won't live to see my 60s.
03:25 There's just not enough brain mass and my brain is atrophying
03:32 at an accelerated rate. So it's not a very good prognosis.
03:38 What I found was there was a lot of people like me that, and younger than me,
03:44 that are experiencing the same type of situations. They all have
03:50 different types of dementia. There's people with FTD, Lewy body dementia,
04:00 vascular dementia, Alzheimer's. I mean, it's just, we all, even though we all have different types
04:06 of dementia, we do have a lot of things in common. And it just really gives us each a
04:14 sense that we're not in this alone.
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