The Dementia Lie

My elephant is missing

On 1st September 2025, Nerys accompanied me on my annual appointment to the National Hospital for Neurology and Neuroscience at Queen Sq, London. 

After about 15 minutes of consultation, Professor Warren came in to join us and we were told that my PET scan from February 2025 had been assessed and the results - along with my lack of cognitive decline and not dying nearly quickly enough - showed I did not have dementia.

What?

The elephant in the room we had clearly identified and got to know well over the last 4 -5 years was suddenly gone, leaving a pachyderm-shaped void. 

What?

It's good news. You don't have dementia. You're going to live!

Ok. Er...

What do I do now? Apart from having the rug pulled from underneath me, and feeling somewhat fraudulent about all the fuss I've made about having a rare dementia, I'm left with...nothing.

That elephant was handy, as once I could see it I knew how to manoeuvre around it. It had a purpose. It was the thing we could blame, could pin certain behaviours onto, would avoid at times and push back at others.

What do I do?

Er...

Start again.

The brain is a highly complex thing. This happens. You'll probably want to go down the mental health route. Get a psychotherapist. Good luck!

Having since looked it up this is indeed a not uncommon thing with FTD. People have mentioned suing for the misdiagnosis. It would be very complicated and take years and probably not result in a win. 

I understand if my lobes looked a bit shabby anyway - I always maintained they were pulled out of a skip when I was assembled

So, the long and winding road of mental health for me. 

My self-diagnosis is Autistic Burnout. Makes perfect sense to me. Masking by copying others, which I can remember doing from a very early age. 

But we'll have to see.

Waiting time for autism diagnosis is 3 years on the NHS.

People say - are you going to go back to work now? 

Thing is, the symptoms are the same! They haven't gone away just because the label's been removed! I'm still inappropriate, easily flummoxed, get crazy tired, foggy-brained, overwhelmed, hypersensitive to noise and bright light and snappy as a demented cartoon mantrap. 

I'm not coming off the 100mgs of Sertraline any time soon!

So what should I call this blog now...?