My journey with Frontotemporal Dementia

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 an elephant-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...?

Update 20th February 2024

Since writing this over 3 years ago, things have changed.

In September 2022 I did my last masonry job and wound the business down.

I am separated from my wife and now live with my elderly parents in Somerset.

The semantic part of my dementia has turned out to be less significant than my frontal lobe (Behavioural Variant), which became a big issue for those closest to me with my frequent unhinged outbursts and permanent simmering anger.

I was even scaring myself.

I then took Sertraline which for unknown reasons doused the fire almost instantly.

It doesn't work for everyone but thankfully it did in my case.

I still have lots of friends, have made new friends in Somerset, and continue to be productive and play Dungeons and Dragons and try to busy myself. 

As you were.

Me, now.

December 2020

I have been diagnosed with a form of dementia called Frontotemporal Dementia (semantic variant). It’s very rare, and I’m among the youngest to get it. Please note it is NOT Alzheimer's.

This isn’t a call for sympathy by the way. Nor am I trying to show how sickeningly super-positive I am, because I’m not, at least not all the time. Some things in life are just shit and you just have to be stoical about them. What else can you do?

Dementia is weird as despite the neurological functions it affects, everyone is different and everyone is affected uniquely. It seems to exacerbate or amplify your traits and idiosyncrasies, so I’m even more me at times! 

FTD (sv)concerns shrinkage of the temporal lobe which sits just by the left ear. It’s responsible for language, insofar as I forget or confuse mainly nouns, proper nouns and sometimes numbers. I can still speak but trip over certain words, but I have to check everything I write as my syntax is sometimes very erratic and I’ve made expensive mistakes ordering stone for work!

My cognitive abilities are impaired, and I won’t be able to work for ever. In fact, I can see I have about a year left. I can’t juggle lots of things in my mind - multi-tasking is nigh impossible. I get names and numbers confused and get very flustered in doing so. Don’t ask me to make a decision quickly!

Also, what they call executive functions such as even starting a job are incredibly difficult. Sitting around doing nothing has never been easier!

Oddly enough the working or carving of stone along with driving are unaffected as these are motor functions which reside in other parts of the brain.

I find social situations and noise tough to deal with. At a party I’ll often go outside for some quiet rather than be in the middle of a loud conversation which I find hard to bear.

My frontal lobe is also affected, and this affects my behaviour. Sometimes called Pick’s Disease, it is concerned with the loss of social mores (I know, me of all people!) and I can lose my temper in a second then be back to calm in a second. It always used to take me hours to calm down in the past when that happened, now my temper subsides in seconds. 

I make even more inappropriate comments than I ever used to. I think I’m being funny but I end up just sounding rude. And you thought the old me was bad enough!

Another thing is how emotional I am, yet one of the first things Jacqui noticed was my lack of empathy - a classic FTD sign, Empathy and emotion are controlled by 2 different parts of the brain. Who’d a thunk it?

I have a sunflower lanyard ready to show people when I really can’t cope anymore, but this is for further down the line!

I’m still playing Dungeons and Dragons and Dungeon Mastering is the equivalent to me of sudokus and crossword puzzles - a mental workout. I live for this.

My family and close friends have been - unsurprisingly - incredibly supportive. 

Life expectancy from diagnosis is between 2 and 20 years.