Am I a fraud?

No news isn't necessarily good news...

I was going to write about Bruce Willis's recent diagnosis of FTD, but I won't because we had a meeting with the Neurology team as a follow-up to my lumbar puncture in late November and I know more about us than him.

The neurology team had sent a letter we hadn't received as a follow up from the lumbar puncture. They told us in its absence, that the tests had shown up no signifiers. This is more than likely, good news.

They did a quick neuropsychology test which as usual I performed with flying colours.

They said the MRI from 2 years ago and the most recent one showed no obvious increased atrophy in the frontal or temporal lobes, but did in the Hippocampus. They are going to use an AI program to 3d model one image over the other to get a more accurate picture of my brain.

They said they didn't know for sure what my dementia was - Behavioural or Semantic variant or other, and that in time it will show itself, but for now my dementia symptoms (searched long and hard for that word!) are atypical with any one dementia and are mild.

I'm due an MRI scan in July again.

As for the replaying of events over and over in my head and me shouting out for them to fuck off, that could well be a psychiatric problem.

When we got home I checked my email and paperwork. 

Despite my illness I'm still very organised compared with most people.

I put all my medical correspondence in the green box file. The letter isn't there, nor do I ever recall seeing it. They said they'd emailed it too. Nope. Been waiting months for it too. I would have known if it had arrived.

Who cares for the carers?

J has taken yesterday really badly with another sleepless night. 

No definites - no tangibles - from the best neurology department in the country.

She no longer has a husband. Just this child. What is the future? How can she plan? This isn't what she signed up for. And am I making it up? 

She's not so sure it seems. 

Geraint earlier today

That old adage of walking a mile in someone else's shoes. Very difficult to do of course. The nearest thing I can do to communicate where I am is write this blog.

What with work, family and the house, and the lack of sleep that induces, J doesn't have time to write a blog.

This aspect of the disease and how it affects others is horrible.

I don't want to put words in J's mouth, but it's clear to see how awful this is for her.

So do I have dementia?

Well, I'm finding reading more difficult. It's more of a mechanical process and I don't always ingest the message of the writing. I will sometimes start at the last paragraph then impatiently dart to a previous paragraph, then to others, not completing the article, and then move to a different article entirely which will hopefully garner my undivided attention.

I can't cope with work. Haven't really been able to for years. Fyfe was doing everything by the end.

I leave lights and the oven hob on. I discover unfinished tasks, and search for things I never used to lose.

I need to make notes about a D&D session so I know it really well. I open my notepad and the notes are already there. A vague recollection of doing it; the names and contents are familiar, but I don't know it well enough to run it, but I end up doing it anyway because I can't knuckle down to study for the reasons above. 

More mistakes but the players don't know and are  - hopefully - still enjoying it.

I'm just being rude when I think I'm being funny. I can't do light and noise like I used to. I just want to get out of party-situations, which I used to love.

I don't want to go out or do anything, apart from games and TV. I obsess about something for a while then another thing after that. 

I'm more absent-minded and my short-term memory is going. I lose words, take ages to find them straining my brain, then forget them again in seconds.

I flap at anything unfamiliar. I can't deal with stress at all. I feel the physical effects - brain-stalls, headache and blood-pressure sky-rocketing almost instantly. I can't take this in. Got to get out. So I walk away.

Is it part-Alzheimers, part FTD, part Semantic Variant? I think a bit of all of them. 

But even putting one name to it - does that even really help? As we know dementia can have a name but it brings out very different behaviours in the sufferer. 

Floating in the void.