Brains of the Rich and Famous

I'm a Fashion, me

Bruce Willis brought it to the Hollywood A-list, now some US talk-show host called Wendy Williams has it. I looked her up and she is 59. 

Looks like it's the in-dementia for the glitterati, the cognoscenti - the in-crowd. 

I look down my nose at those with Lewy Bodies. 

Alzheimers? Dreadfully common.

Funny how no one seemed to have heard of FTD and now it's known by many. 

I first heard of it in an article David Baddiel wrote about his Dad, who by the sounds of it was always (rather like me) amazingly inappropriate, but who at Baddiel's mother's funeral outdid himself by asking 6 different women if they fancied a shag.

Even by his standards that was extreme behaviour. It was later diagnosed as Pick's Disease.

Baddiel is a patron of RDS.

That was the first time I learned of Pick's Disease. I was also aware that Terry Jones had had problems with his Frontal Lobe. 

It always seems even more tragic when someone clever has a disease that affects thought and communication or an athlete a disease affecting their motor functions. 

It seems twice as cruel.

For the best part - and here I'm very superstitious about tempting fate - I do seem to have stabilised in my decline.  Which I'm really thankful for. 

Small mercies and all that.

Still conversing with dog walkers, still running complex daft games, still reading the papers and watching sport and not getting any more (or less) than 8 out of 15 on The Times quiz.

Next week the weather forecast is good so I will do some jobs. I have been as inert as a particular gas for 2 weeks. This always happens after a period of activity: I put my feet up, and they remain there.

But I must do a Baron Munchausen and rise from my throne of atrophy, shake off the dust once more and commence battle!

First, I'll have a cup of tea and a biscuit.

Satan's Snot

Battling a cold which I told to stay away. A bit like Kenneth Copeland did to Covid 19, I demanded judgment on colds. 

"COLDS BEGONE!" I shouted.

I'm on a war-footing against colds. Vitamin C with zinc, Vitamin Bs, Vitamin D and a green smoothie for even more Bs. Lots of water. No alcohol. Yep - still not drinking alcohol but still my gut has yet to recede to its required girth.

Optimum Girths should be a title for a future blogpost on slimming, but I digress...

I am keeping the cold at arm's length  - I wake up with a sore throat but that's it. Getting plenty of rest and mild exercise.

Always difficult to separate the tiredness from the cold from that of the dementia!

Spring?

“It was one of those March days when the sun shines hot and the wind blows cold: when it is summer in the light, and winter in the shade.” Not me, but Great Expectations by a bloke called Dickens.

At last it’s ceased raining. The floods around here have been awful. Some people's houses now can’t be insured because flooding is considered an inevitability.

New housing estates built in fields push the rainwater off leaving it nowhere to go, so rather like ancient isles in the Somerset levels, they too are surrounded by floodwater, but this being the 21st century, sewage and other ghastliness.

And as I write this, I look out of the large window of The Sheep and Penguin. The Equinox is almost upon us. The light is golden and blinding, illuminating buildings and trees and giving me hope.

The familiar comforting smell of log fires and diesel fumes waft up my hooter as I hop along Chamberlain Street.

Ah yes, Spring is about to er, spring, but it doesn't half leave you hanging, with plenty of false starts and all. 

Magnolia, daffodils, buds on the trees. Such a mild wet winter. Barely a frost.

Should be a dry, bright week - a crack of light in the darkness.

What I’m watching/listening to

Rewatching Archive 81 and listening to the podcast that inspired it.

The podcast must have been really popular in order to have inspired Netflix execs to put money behind it, but the cowards never commissioned season 2. It was the most popular programme on Netflix at the time. 

I love its Lovecraftian horror and its homage to The Order of the Golden Dawn and Crowley. The sound design is incredible; lots of droning and static and strange dissonant music. Inspired no doubt by Delia Derbyshire. 

Bob Todd's dad, Aleister Crowley

The direction really accentuates the cultish Egyptian-inspired Art Deco and the creepy, dehumanising aspect of the Brutalism. 

Best watched in a dark room with good headphones on. God it's good! Made on a tight budget too.

The podcast sounds like it was done on a very meagre budget indeed. Some of the actors in Season 1 are poor. 

Interesting as ever to see the changes they made when transferring it to screen.

There are very few other things I'm interested in on any of the streaming networks.

Moving about a bit

No physical activity for a couple of weeks. Maybe longer. I don't know. But, the weather is good for next week. That means I can go out and mow the grass and do some odd jobs for people. That's really good for me.

I shall reinstate my sister's window sills and mow the grass, and even use the new strimmer for the first time. Oh yes, life has its compensations. 

No, actually I'm going to hunker down here for a bit and watch more YouTube stuff. But I must finsih reading the paper and my adventures - less binary, more analogue.

Hypersensitivity of the wife

I was just on a chat with my other FTD buddies, and one was saying how his wife kicks him under the table whenever he says anything 'inappropriate', which as we know is symptomatic of Frontotemporal Dementia.

Not the kicking that is, but the faux pas. 

Me and my dangling modifiers!

The last year or so of being with J was very stressful for all of us. I felt like I was under watch the whole time. Anything I did or said there could potentially be an eruption. 

I was shouting out while they were working from home in meetings. I realise it was intrusive and at times aggressive sounding.

My indiscretions had become a THING. The elephant in the room. It was a pressure-cooker situation. 

I no longer feel that anymore. 

I guess when someone has something they can't help that we should try and laugh it off.

'Oh that's just X's condition! Ignore him.'

Easier said than done of course.

This shouldn't put your self-censorship offline, and I realise it's difficult to laugh or shrug something off, but I think rather than waiting for the next faux-pas to happen - and it will - building the expectation up just makes it worse for everyone. 

If you're waiting and waiting and waiting then the stress of it all just snowballs.

After all, we forgive the Tourette's Sufferer. 

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.

Remembering Simon Mayo

Simon Who?

 Lying in bed at whatever o'clock. Thinking about a film review and it took me ages to think of their names. 2 familiar people but no names. Mark. French surname. Not Lamar. The other guy. Philip? Odd surname again. Mark Kermode! 

Then I forgot the name again.

I went back to sleep. I woke up and the name - Mark Kermode. That's a good start. And Simon. Simon what though? Amstell? No.

Mark Kermode

I got downstairs and remembered Mark Kermode and Simon Mayo. But that's a new one. I'm forgetting names a lot more now. I need to keep practicing.

Bruce Willis

So Bruce Willis who we knew already had a form of dementia. His family have recently released the news that it's FTD. (J as usual guessed it was months ago.)

I hope they use his fame to promote knowledge of the disease, rather than lie back and do nothing.

It's quite nice knowing I'm a trend-setter.

Walking the Dogs

J and I walk the dogs every day. J uses it as a form of catharsis where she works through her work out loud. I don't say much at all. Just listen and occasionally drift off into my own thoughts. 

Most of it is jargon-rich corporate stuff and people who I've never met and never will. I don't understand most or any of it. But it helps her and I don't have much to say when we walk - just take in the natural world and the joy of the dogs.

Now and again she expresses the burden she feels, being the primary earner, the runner of the house, mother to me as well as the children, the dogs, her parents, her family.

It sometimes takes a while for me to express how I feel - to first work out the elemental message from all my thoughts and verbalise them in a way that's factual and free from emotion.

So I go quiet and she knows I'm upset.

I'm sorry she's burdened with my illness. It's not what I wanted either, and don't think I don't feel both guilty about it and grateful to you at the same time. But what am I supposed to do with this information? What do you want me to do?

Fair point.

I'm glad I expressed myself like that. It's increasingly difficult to express myself constructively as the alternative would be an irrational, emotional outburst.

I ask myself what do I want to say, what is underlying all these emotions?

It doesn't get any easier.

Elden Ring and gaming update

Love/hate relationship with Elden Ring. After 174 hours of game play. - 174! -  I'm on the last 2 bosses. I'm not expecting a good outcome. Some of them take 30-50 goes to get past. I ended up asking myself if I was enjoying or hating the game.

I left it for a couple of days and told J I had had enough. 

She looked relieved the man-child was off the console.

I was back on a day later. It is daft though. I'll be glad to complete it. However it's such a massive game world you could play another 100 hours to complete it all.

I've 2 D&D campaigns which are both in their latter halves - the Monday crew at its final chapter. 

I'm finding it more and more difficult knuckling down and properly prepping the games. I think having the temptation of The Elden Ring in the other room doesn't help.

But when reading and taking notes my eyes dart around the page and then I've lost my thread. Staying on a page is tough. Making notes is good but not if you find yourself on autopilot. You end up with notes that mean nothing.

I really have to knuckle down today and get my head round it all. Try and visualise the party in a situation, the motives of the NPCs (non-player characters who I run) and then play out possible outcomes. Of course, the players rarely do what you expect them to do but having various options gives me food for thought - it fleshes out the characters - so when the players throw me a curveball I'm more in the head of the character and can react accordingly.

Sunday afternoon - here I come!