All Change!

 Communications Hub

Oh dear me. I seem to be the reason everyone is upset. Well I don't seem - I AM the reason. Having wanted to mitigate for any possible confrontation which I would have found unbearable to deal with, I decided to be the conduit of communications between J and my parents and sister while keeping everyone apart. 

Big mistake.

In my efforts to mitigate any potential conflict, I ended up getting rather confused and my worries became truths. 

For reasons I can't at present go into, it's been deemed best that I go to live in Wells for a bit with Mum and Dad. They are good, solid reasons too.

You may have gathered that I'm not very good at planning or thinking of the future in any way. It doesn't compute in my head and I also find when I visualise the future it's not a nice place. How can it be?

So a combination of panic about the future, trying to mitigate potential conflicts, and keeping people who should be talking apart has led to mistrust between people and a lot of hurt.

This was obviously not my intention, but I guess my declining cognitive faculties and general risk avoidance makes me the least appropriate Director of Comms there could be.

For example, when I explained things to my parents about 'the situation' at home, their natural reaction was to become very protective of me and side with me. Things at this point get a little muddy for me. I remember trying to explain the situation and everyone getting really uppity and adversarial. So I joined in too. I was scared and confused. So many things had been said, ideas and various solutions, which was the end one? My brain was scrambled. 

It also appears I am more fickle than I used to be.

Events cascaded until J suggested a Zoom call with everyone. The lead-up was very stressful as I was expecting fireworks, but it has quelled the storm and clear lines of communication have reopened, with me on the touchline cheering on. I still give my thoughts, but it's clear I'm not to be trusted! 

I don't even trust me anymore.

The Future

I am going to be living in Somerset for the next few months at the end of July/early August, to give everyone here a break. However I want to come back to Kingston every weekend to play D&D though, but it will mean staying in a Premier Inn or on someone's floor.

That's okay.

As long as I can get to see my friends  - I've lived in London for most of my life and the densest population of friends is here in and around London - I'll be happy. I have a couple of friends in Wells too, my sister and Mum and Dad, and other friends in Bristol and Cardiff. I shall have to jump on the train and visit them!

You have been warned...

But I will have to make a life in Wells too. There are gamers everywhere so it shouldn't be too difficult. I shall be upfront about my dementia, and I am still a good player and DM. And gamers are an inclusive bunch. 

I also have the games holiday to look forward to in October.

And it would still be nice to go on walking holidays with J and Ben and Dr Becks.

But I shall miss both my human and dog friends very much.

Fly Swatting Update

I have swatted dozens of flies now. I have divided them in 2 groups: alpha flies and rubbish flies. Rubbish flies hang around in the kitchen and are quite small. They are easy to swat. They are slow and congregate together. They are rubbish.

Alpha flies are big and very aggressively buzzy. They are large and black and very fast and agile. I lock myself in to a room with one and with Wilbur we hunt the varmint down. The great advantage of hunting with Wilbur is that once the fly has been swatted Wilbur then eats the fly. 

It does involve standing on chairs and sofas and bashing curtains to activate the flies from their slumber. NEVER GIVE THEM TIME TO REST! 

What now then?

Why this blog is rubbish

I read the other day that most good art is created by flawed individuals who may be in a bad place. Some examples would be Larkin, Picasso, Caravaggio, Liszt.

And there is that current conversation of separation between art and artist: do we take down the Eric Gill because he sexually abused his daughters? If yes, do we take down the Caravaggios because he was a murderer? The difference is surely how long ago these things happened. If the 20th century it's more pertinent. If it happened now immediate expulsion. The 16th century? Doesn't matter!

I do find it genuinely easier to write when I'm in a bad place. My ideas just flow out of me, like thought-diarrhoea. And I'm as fucked-up as Philip Larkin, but I just don't get angry any more.

This post has taken days to get going.

The thing is I'm trying - and often succeeding -  to live in the moment and notice beauty and warmth and pleasure. All the easier while I have no capacity for planning (or indeed facing the future) anymore.

I have so much time I can use what grey matter I have left to take on big ideas and watch and listen to footage of the likes of Christopher Hitchens and Werner Herzog. 

I've always like the company of intelligent people.

What was I saying again?

Gut-buster

I'm fat again. It's sugar. Sugar in biscuits, sweets, beer. I look bloody awful, and my jeans have never been tighter, and yes, I do wash them at 30', so it is me.

I've felt really indulgent recently, and the new Lidl is amazing for biscuits and being me I want to sample all of them. 

I tend to drink alcohol on Tuesday evenings and at the end of a D&D session on a Sunday - having drunk zero-alcohol beer up until then, to keep my struggling brain as functional as possible.

I need to be more disciplined. I yo-yo these days.

Favourite Dinner party guests

Mars Bars are the most popular confectionary. The reason is they are sweet, and not much else. And the textures are easy on the gob. Is it the best chocolate? Of course not; I wouldn't even describe it as chocolate. 

But it's the most popular. 

I use this particular metaphor to remind people that popular doesn't mean best. It often means least offensive.

People who I would love to have met, who may not have got on so well at a dinner party would certainly offend a lot of people.

Frank Zappa - highly difficult music, very intellectual guy who interspersed his music with offensive words and lyrics. The man who put the sneer into rock and roll. Huge output of music from large orchestral pieces to self-indulgent guitar solos, with incredible songs using multiple key changes, meters and improvisations. Check out the band he had in the early 70s with George Duke and Ruth Underwood. 

Werner Herzog - auteur director and actor. Made feature films and documentaries, usually of individuals trying to achieve something in a world that is alien and hostile to them. Aguire Wrath of God, Fitzcarraldo, Grizzly Man. He is fascinating to listen to, and the stories of the making of his films are as fascinating as the films themselves. 

Andy Kaufman -  a performance artist masquerading as a stand-up comedian. The joke is on you. And if you don't get the joke, at least Andy is laughing. Also Elvis's favourite Elvis Presley impersonator.

And why do I admire them? Because they're mavericks. They followed their vision without any compromise or tangents. I realise they're very Marmite (adj). But mavericks tend to be. 

You may hate them, and that's okay.

By the way, I am the antithesis of a maverick. 

My Current Addictions

So much news going on and so much of it terrifying. I've found CNN is the best one in the States: Fox is rabid, MSNBC horribly smug.  Thank goodness for Sky and BBC and C4 in the UK. And left and right criticise them.

My list of top news stories is as follows:

Trump. This is huge. America split down the middle. And I fear this could end in a civil war, the implications of which would be profound for America but also the rest of the world.

Ukraine: Belarus is about to install Russian nukes and Medvedev is threatening to sever the info cables under the sea that connect us to each other. This could be the start of Cold War 2. But is Putin desperate enough to actually go ahead? We (collectively) in the West certainly didn't trust the USSR back in the day (some of us didn't trust America either) and I see no reason to trust Russia/Iran/ChinaNorth Korea now.

Starvation in North Korea. This is a country that can't grow enough food to feed its 26 million inhabitants and there is a starvation there that echoes the starvation in the 1990s. Compounding this is the fact that the leadership is spending money it could feed its citizens with on its nuclear development program, and has stopped importing food from China. In fact over the last 3 years it's closed its borders and expelled foreign citizens to the extent we only know what's going on there from the few people brave enough and canny enough to have communications with the outside.

B Johnson is dominating the front pages in the UK but this story is a footnote. If you haven't already realised that to him the truth is an irrelevance then you should probably get some therapy. 

Buffoon.

Swatting

I always hated this time of year as it's exam weather - the most brutal time to be indoors for days swatting away. Seeing as I never could get down to any effective form of revision, and would always get sidetracked, I have always hated exams as the stress I endured was awful.

The Executioner.

This is all a pathetic attempt to try and make a pun about swatting as now I'm running round the house looking for flies (for some reason we get a lot of them here) with this bad-boy (pictured). And it's addictive.

However, this farcical attempt at a joke is not working and probably was never going to.

Sorry. I'll go now.

Mid-Somerset Ramble

BBC Rare Dementia Podcasts 

Firstly, the Radio 4 series on rare dementias what J and I were interviewed for back in whenever it was, was aired last week. People have been very positive about them. I thought Jo, the novelist with Semantic Dementia was the best programme of the lot.

Really worth listening to as a window into the different dementias. I hope this opens the door or rather plants the seeds for more programmes and education on rarer dementias.

https://www.bbc.co.uk/programmes/m001kww0/episodes/player

Here’s a shortcut to my one with a totally fucking awful photo of yours truly:

https://www.bbc.co.uk/programmes/m001kwvx

Time Stop

I’m in my childhood bedroom typing this. On this desk I did my homework and I wrote some of the most illogical yet super-creative Dungeons and Dragons adventures of all time. Amazing how many teenagers would fit in here back in the day.

(Sounds a bit weird saying that now.)

Teenagers under cultural circumstances

I’m hoping some of the creativity lives on as a morphic field, bound to the desk, and that I will be able to successfully convert a 42 year old first edition Descent into The Depths of The Earth to a 5th edition Dungeons and Dragons adventure for a party of 4 14th level adventurers. 

It’s a big ask, I’m sure you’ll agree. 

It’s taken me days just to read through the bafflingly Joycean prose of the original in the full awfulness of its tiny sans-serif justified type. As a friend said, early D&D was written by computer-programmers: it needs translating to human before digestion.

Is it a cold or hay fever? I’ll take an antihistamine (thank you spell-check) and find out.

Surrounding me are photos, books on golden ages of Welsh rugby, Ben’s Star Wars lego; outside old  neighbours who’ve been here nearly as long as my parents, multiple Ford Foci, and acres of regularly mown lawn. 

TIDY! As they say in Glamorgan. 

Here’s a word in Welsh: Hiraeth. No wonder we have King Arthur. 

I was always nostalgic. MAGA - is that an ugly version of Hiraeth? Something intangible that never was.

Properly rambling now.

Why I’m here

I’ve been asked to bugger off for a couple of weeks from Kingston, very nicely it must be said, and I was also willing. So I’m visiting my parents who are kindly eschewing Cash in The Attic on my my behalf due to my incapacity for noise. I’ve cooked for them a few times the wonderful food J cooks for me. 

‘Interesting’ was Dad’s verdict on the Butter Chicken and Black Dhal I cooked last night. That usually means ‘shite’ as far as I’m aware. He ate it all anyway. Mum’s off her food and found the tender-stem broccoli anything but.

Jesus - I could be a food writer. How difficult is this? Just wasn’t born a Coren or a Gill.

Meeting old friends

Met up with Franca, Tanith and Clare. It was nice to see them all. I have good chats with people but I’m also aware that I shouldn’t bug people like the saddo I really am. So keeping it to once a week while I’m down here, per person. 

Nice to chew the cud and have a laugh at other people’s expense. Visiting certain people is like meeting Huggy Bear in Starsky and Hutch. I’m getting the low-down from the street, baby.

John Hannam opposite asked where my van was. I told him about my dementia and that I’d had to give up. Mum and Dad haven’t told people obviously. I don’t blame them. Gossipy little place this. It’s enough for them to have to live with it without being constantly reminded of it by busy-bodies and the well-meaning.

Nerys has been busy with everything this week so I’ve seen very little of her, and Mark will be down to look after his mother from next Wednesday.

At least being Jonny-no-mates is a good incentive to sit down and write.

I miss the dogs and am starting to miss the female humans.

Atypical Dementia

It’s odd having an atypical of an atypical dementia diagnosis. When you’ve got it you don’t know what will happen next. What will be the next part of my self to go downhill. Being part of various support groups, I can see and hear people’s prose or speech degrade, to the point where they make less and less sense.

Mine is behavioural so I am just increasingly inappropriate. But, I’m not aware a lot of the time how. I have a little rule that I often - in the moment - fail to follow, and that is, if I think of something hilariously funny I should probably best not say it.

Many of the things I post now are quite outrageous I hear. I think they’re funny. 

But then again I’m a bit demented.

Cheery Thoughts at Christmas

You have no idea how alone you feel 

Withdrawn into a world ever distant from those closest around you. Told how out of order you are, that your behaviour is scaring certain people, that people are treading on eggshells around you. It feels everything I do or say at times is wrong or offensive to someone. You end up just wanting to go into a room where you can lock the door behind you and indulge your own quirks and interests. It's better for everyone.

Me and you are understanding each other less and less.

It's increasingly impossible for me to understand what is upsetting people. I know I lost my temper weeks ago but I'm still paying for it. I scared people. So I took pills to mitigate my anger. I still lost my temper - we all lose our tempers now and again (well, most of us do) but in a less explosive way. 

So I'm here listening to Louis Cole's latest album which is delightful, and typing this as a form of catharsis. And a smile is back on my face. 

Last time I did this I mentioned names but I've learned that lesson. There's some very sensitive souls out there.

Mortality

My parents are elderly now. You know that thing where you visit them periodically and they are incrementally older each time? You notice it if you live apart.

Mum had a stroke last summer and I was there to witness it. It was like she'd saved it for all of us to be present and then let go for it to happen.

It wasn't like that of course, it was just a coincidence. But it felt like that to me.

I think she's had mini strokes since then. She doesn't want to leave the house now. In a way her and I have synchronised. She has issues with her semantic memory, gets muddled up from time to time. 

Dad is doing everything around the house but he is getting more frail. Demented son is going to go back in the New Year to do some odd jobs for them around the house. God help 'em...

Mortality becomes really apparent when you witness chronic conditions in yourself and your loved ones.

I'm gonna be a star!

On the upside, I've been contacted by those awfully nice people at RDS to be interviewed for Radio 4's Women's Hour. I sent an email to the neurologist who'd be interviewing me and if my pathetic attempts at humour haven't put her off I may be chosen for the final cut.

I'm also part of a group of partners/carers and people with dementia who will be doing talks to get the word out about the seven rare dementias (there are around 200 different types of dementia) that RDS represents.

It feels good to be able to speak about my condition without hopefully bleating on about how terrible it all is.

I shall make some huge faux pas no doubt - all part and parcel of being demented!

Dungeons and Dragons update - no wait!

D&D is ongoing with the 2 campaigns. I would play every day of the week if I could.

But I need something else and I've just bought the 7 books of Narnia. When I was around 8 I read The Lion The Witch and The Wardrobe. It was the best thing I ever read. I loved it so much - (SPOILER ALERT) that there was another world accessible through an old wardrobe.

But the teacher, Mrs Allery, never told me that there were other books in the series so I read it again and it was only years later that I learned it was a series of 7.

I'm really looking forward to reading them through Christmas and the New Year.

That and the speech-making/giving for RDS are really positive intro to 2023.

Quaint little hellhole

 Vanless, clueless

Having sold the van I’m now consigned to public transport. I came down on the train for the first time in years. I’d thought Castle Cary was much further away  - the same distance Bath is - but it’s only 10 miles. Dad was there to pick me up - just like when I was in my early 20s! It was a really nice journey on a new train. My noise-cancelling headphones and a half-full carriage added to the quality of the journey.

Dad chose a really dumb way to go back. I wanted to go back through the pretty villages of Croscombe and Dulcote for old times’ sake. I used to cycle to see friends who lived there. Bike lights back then had about as much illumination as a cigarette. I never got run over, but I did end up in ditches a couple of times. 

Instead we went back through country A-roads with high hedges and littered for miles. With the detritus poured out of vehicles by scum. 

Long-haired hippy bastard!!

What can I tell you about this place? Well it’s changed and I’ve changed. We’ve changed. More populous, more affluent and at the same time more down and outs. Visible heroin problem and lots of mental heath issues. The 2 are not necessarily mutually exclusive of course.

I realise this is par for the course for almost every developed country in the Western World, but hey.

I know very few people here now. It always amazed me who came back, not who stayed. When I left and being a creature of habit, I never wanted to leave, yet I ended up in London, dirt-poor, looking for work. But it was so exciting and vibrant. To a young person it was great. No one calling me out for looking different, no one trying to ruin mine and my friends’ evening because it was their way of feeling better about themselves. In fact, lots of people like me, relishing their new found anonymity and that no one else gave much of a fuck either. No one was going to try and ruin your day. There were lots of people much more edgy than me so I really truly was a minnow in an ocean. Bliss.

Freedom in other words; a chance to reinvent oneself. I shone brightly for a few years, thankfully realising there was no place for me in the world of advertising - despite having won an award as a student - and then after an epiphany and retraining to be a stonemason, I found that the umbilical cord I thought had long-gone snapped me back home like a bungee and I got a job in a local stonemasonry banker shop - the only positive reply I received from a dozen letters, and so I returned, churning out stones in factory conditions at £4.15 per hour in 1996. A 39 hour week meant I would have a net pay of £130 if memory serves. And the place was like Lord of the Flies with the chosen alphas at the top who would give beatings out to the apprentices, but had their favourite - a surly little bastard just like them. They’d call it toxically male these days. 

I spent a year there an then went to a much nicer place in Shepton Mallet which produced a far better quality of work.

But I digress. It’s strange moving back to a small place when all your peers have left as well. It’s like the heart and soul of Eden has just disapperaed making it feel like a semblance of itself. There are people who never left who can be quite resentful that you were ‘disloyal’ as they see it. I find the patheticness of that really funny.

It’s also funny - to me at least - that the biggest rebel I know returned there. I know she’s told me why but I can’t remember and I think the reason that I can’t is that I could never truly get my head round why.

Brain not compute…brain not compute…

So after 2 1/2 years I packed everything in and moved back to London, but that’s another story.

Modern life IS rubbish (but it has its compensations)

I’m at the cafeteria of The Bishop’s Palace having a vegan sandwich. I’m not a vegan but I’ve developed an intolerance to lactose. It’s an age thing, you see.

Middle-classed hippies with their home-schooled boundary-free kids running and screaming at the other end of the restaurant. I’m here at the furthest end from them, safe with my coffee and cake with my noise-cancelling headphones.

What would I do without you…?

I recommend these to everyone who has dementia or any sensitivity to noise. Other people’s dogs, children, mobile phone conversations, loud revolting students (a tautology, I realise) and just general pub/restaurant/classroom etc noise. Makes life more tolerable. Not a cure, but a treatment.

You probably need a product demonstration. In fact, you definitely do if you haven’t put a pair on. Unless you’re already hard of hearing which I would say is a far better place than being hypersensitive to noise.

I should have been in advertising. 

Actually, no.

Even the people I know who went into it regret it.

Stonemasonry was the least worst way of earning a living I ever found. I tried a lot of different things see. I would have much preferred to be a trustafarian just doing course after course. Loved learning new things.

Maybe in the next life.

Behavioural it is then.

 Angry lever jammed in the ON Position

Friday afternoon - I met the goblins at The Antelope (seriously) and there happened to be a beer festival. Amazing beers - New England Pales, IPAs and unfiltered pales. Gorgeous. I didn't realise how drunk I was.

I came back in good spirits and was sat in a room with X. What set me in a rage is immaterial. But rage it was.

Since then I have been very quiet and have made the decision not to drink except with a meal. I have been looking back at this moment in time and since then I have been feeling as though a change has occurred.

 A change within me. I could go more easily at any time. This is not a good place to be. It's like I'm shaking inside.

To placate it I listen to calming music and read. I watched The Rings of Power last night. Despite the basement dwellers' condemnation of it, I found it a great tonic.

It would seem the overriding form of dementia I have at  present is FTD Behavioural Variant, or Pick's Disease. The Frontal Lobe is degrading, which is a shame in the main as it's responsible for behaviour. So, more irrational shouting out, rudeness and anger.

This is a genuine trough in the overall dementia wavelength. I'm also a little bit more discombobulated when it comes to being put on the spot with conversation, being questioned and so forth. 

My conversational topics are becoming very limited as well. This must be very tedious for everyone else!

One of those clients

A man phoned me today as my masonry website is still online. He started almost telling me what I was going to do in the job as I would be working with another bloke I don't know. I took an instant dislike to this guy. You don't phone up a specialist and tell him how to do his job. He was pretty condescending in his manner too.

The conversation was very stilted and the temptation to tell him to fuck off was palpable.

I didn't though. 

Don't worry! If he calls again I will.

Bye Bye Van

There are certain things in life - key moments. This was one of them. Over the last couple of weeks 2 friends have come over to buy tools and equipment from me I will never use again. (Saying that, I kept other equipment I will probably never use again, but hey...).

But it was the van being sold and driven out of the driveway that has really resonated. We've been through a lot - we had a symbiotic relationship. I couldn't have done so many things without it. And then with all my decals still on, it goes from my life. And that was the end of that.

That's pretty significant I'd say.

It's funny how we anthropomorphise inanimate objects, machines etc. We love our pets and grieve for them like a family member when they pass. 

Although I haven't wept, there's definitely a part that's gone from my life. It wasn't just the van - it's what it signified: my working life; my contribution to the family; my living; the one job I hated less than the others.

It's made me feel confined. I want to go out less and less and only to places I'm familiar with, unless I REALLY want to see someone or something.

That chapter is now well and truly over. Suddenly my arrogant distain for the RDS monthly group has gone - I need it now. I belong there. These are my people. I've seen people degenerate in only the 2 years I've been a member. I thought I was almost immune to it. Like Chris or Alison my dementia would remain constant for 8-10 years. 

Nah.

Next Chapter

Well, I'm enjoying cuddling up with the dogs on the sofa and taking them for walks, although Stanley is extremely naughty at the moment. His mother won't hear anything of it though.

Evil Incarnate

I'm enjoying reading and preparing and running Dungeons and Dragons games. 

I need something physical to do as well. I'm atrophying quite quickly, plus the exercise is v good for the brain.

I'm going to Barnes Wetland Centre for 6 mornings starting in October in conjunction with RDS (Rare Dementia Support) as I love birds and nature so I am really looking forward to that.

I've got the games holiday in early October for a week.

I'm going to see my family in Somerset late September, and see my friend Mark.

Still got the gaming, Sundays, Mondays and Tuesdays.

That's pretty good. Better than nothing. Helps to write these things down so you can see them.

 I feel better now. Thanks for reading 🤓

The Truth about my dementia

 The Grim Bit

What to write anymore?

I could go on about the minutiae of my life in that droll way I do which everyone is very complimentary about. But I think it's getting boring. 

I suspect it's lost its way a bit.

So what can I tell you? I don't want to sound self-pitying. It's a danger area I try to steer clear of. It never helps anyone.

I'm going to try to cut through the chummy guff and tell you what I can. 

There are 2 people immediately involved with this dementia issue: J and me.

Our relationship has been more companionship than anything for the majority of our marriage. There was a period I wasn't aware of when J couldn't bear to be with me due to how I'd changed.

We had relationship counselling 2 years ago. It was always going to be the sticking plaster over the rift.

It was horribly upsetting. For me, I felt such a failure. I still couldn't understand why things had just gone; just petered out.

We then got my FTD diagnosis.

The more we learned about the condition, the more it explained why I didn't get where J was coming from most of the time, my lack of empathy, why I was behaving like I do, and the symptoms I was directly conscious of, like tiredness, irritability, oversensitivity to light and noise, my unwillingness to do shared activities or go anywhere, losing words, substituting words, the ever increasing brain fog, my temper and even more faux pas than ever before.

We probably use FTD as the whipping post more than it deserves, nevertheless...

...here we are J and I, in the present. Her working upstairs and me downstairs typing this. 

I try not to think of the future as it means further degradation of my brain and behaviour. Nothing I nor anyone else can do about it.

I've always been nostalgic for romanticised visions of my past and at the same time haunted by those myriad times where I let myself down, which I'm reminded of every morning as I wake up.

J is very future-focused (management -speak) and we are finding it very difficult.

What is our relationship, what will future relationships look like, how rapid will my deterioration be?

It's very difficult planning if you don't have even a rough idea of timings; key-moments.

I don't know where any of 'this' is heading. 

But this is where we're at.

Mitigating the Inevitable

Okay, let's try and be positive here. I am trying to keep my brain fit and functioning. This is how.

I'm playing with the dogs every day - Stanley and I play a game with these balls which bounce irregularly. I throw them off the wall and he goes crazy trying to catch them. I think it's his new favourite game. He's not interested in the other balls that have a regular surface and bounce predictably. We do this for half an hour at a time. 

Aren't dogs brilliant?

I love the dogs. Chippy is a bossy dachshund who is deeply suspicious of strangers, and Wilbur is a dopey Spaniel who is the greediest dog in the world, but he's lovely.

I've also started juggling again, to try and keep my coordination from going. Years ago in the 90s there was a juggling craze. While juggling 3 balls is muscle memory you do get out of practice and I used to be able to do tricks. I'm trying to do 4 ball juggling again as I used to really like that. I'm getting there...

I read lots of news  - The Times everyday, parts of The Guardian, BBC website for news as it happens, and also other magazines and feeds. Looking forward to today's news to see who our latest totes-inappropes PM will be.

I also run D&D games as no doubt you know. This involves assimilating huge amounts of information, storylines, and roll-playing numerous characters while riffing with the players. All the while trying to keep the flow of the story and plot(s). It can be exhausting.

I DM'd a new campaign yesterday - very different in its setting (think Game of Thrones meets John Carpenter's 'The Thing') which I think went pretty well.

I write a journal every night. It's complete salacious garbage but it's my complete salacious garbage.  

It's cathartic, if nothing else.

So I am trying to keep going - keep ticking over - while the temptation is to sit on my backside watching the same old stuff on YouTube!

All things considered I'm doing okay.

I'm okay.

SHUT UP GERAINT

Nothing to say

I feel I have less to say these days. And that's not like me at all.

I read the newspapers and walk the dogs and play my games, do my chores. I just don't seem to generate the same yield of rants and opinions that I did even a year and a half ago.

This must be part and parcel of the general decline in my brain activity. 

I've had the intention of reading lots of Dungeons and Dragons books and have achieved very little - a chapter a day at best. Disappointing.

I still have my lists. My reminders on my calendar that pop up to put me back on the tracks.

God it's easy to ignore those. 

In fact I laugh in the face of digital pop-up reminders! 

I chat over the news with J, but less so I think these days. It may be that with the 5th rate venal scum we have running the country that it's just too depressing to talk about any more.

D&G Decline?

We keep on cancelling the Monday evening sessions. Sometimes people just don't respond on the WhatsApp messages if they're able to attend or not. It may just be my perception of things but I feel there's a decline in the energy - the positivity - that used to drive the games.

It may be the particular adventure we're doing is less interesting, my DMing (Dungeon Mastering) or just that people are tired after work, the campaign has just atrophied, or something else. 

Maybe it's just my perception.

Perceptions are everything though. 

I get concerned as I drift off into the Astral plane of dementia, that the silvery cords that bind me to you, the world and everyone and everything are disintegrating atom by atom, molecule by molecule.

They are here...

(This is a big D&D reference from the Astral Projection spell!)

Already I feel more distant than I did when I started this blog 9 months ago. 

Increasingly separated from everything until there is nothing.

Oh well, look on the bright side.

😶‍🌫️

Finally Retiring

I've sold my van, which is being picked up next week, and 2 of my masonry chums are coming to buy my old tools, though I am  keeping my hand tools for futile purposes.

2 other friends have asked me to carve a green man for each of them. I'm happy to do this. Whether I get round to doing it is another thing, but as usual I INTEND to do it. It's a great get-out clause I learned from an old (non-masonry) boss years ago. We INTEND to be there. We INTEND to win. I INTEND to knock smack on the head, etc etc..

I'm not really on smack by the way.

Finally I'm doing something meaningful and getting shit done.

A new world beckons. I shall visit my friends, sort out the house, sell things on Ebay, run myriad games groups.

Well, I intend to of course...

I don't do meetings, I just do doing.

Culture of Guff

Having not been in the culture of corporations or medium to large companies for several years, I'd rather forgotten meetings. 

There's a certain type of people who relish meetings. "Goody! We're going to have a meeting!" they cry.

They've been practising their delivery, their jokes (the obvious ones the rest of us think of but can't be bothered to say) which they laugh at themselves, and will drone on and on about the one thing they're interested in that's of little or no interest to the rest of us. 

In my judgmental way, I imagine such people are often pretty ineffective in the workplace, but I digress...

To the rest of us, meetings are an intrusion to an already hectic workload. At best, a necessary evil where 5-10% of the content actually applies to you. 

As you can guess, I was in a meeting the other day. I can't divulge the contents, suffice to say I was no clearer at the end than I was at the beginning.

I used to think a meeting was a sorting office, to provide clarity and strategy in order to efficiently achieve a shared goal.

What an idiot I was!

Now this may just be me being demented, or it may be that in my 20 years absence from the world of meetings, their very nature has changed to become more nuanced and holistic. Perhaps I'm not aware of the subtleties of New Meetings and this is how I fail to grasp the information subtly contained within.

It must be me, as at the end of the meeting almost everyone looked really pleased. However, we did not put a proposition down as to what we wanted to achieve, who we needed to speak to and how we were to communicate it. 

I had mistakenly thought this was the whole point.

When Martin Duncan-Jones - a very clever friend of mine - was at university he was told to not write  essays starting with an assertion, which is then backed up with facts, ending with a conclusion, but to talk about things in a 'perhaps this could be said...perhaps that could be said..." type of way. 

He produced a meandering essay he knew was absolute drivel, and they were so impressed they ended up using it as a teaching-aid.

He realised then the world had gone mad.

Hello world.

The Burden of Dementia

As a person with dementia I'm always trying to delve deep within myself to ascertain what is guiding me at any one moment. Why did I do that, why did I say that to that person, in that way, what makes me happy, what could I do now this minute, what I didn't I like about this or that.

It's all about me, with the odd realisation that I could make the others working upstairs a cup of tea or vacuum the house. 

If something's out of place or someone's left something somewhere it shouldn't be I can get really arsey about it. An obsession with order is very much an FTD trait.

As is lack of empathy.

I don't consider those closest to me a lot of the time  - the space and time they're giving me. Their patience at dealing with me while they deal with their own lives: the cost of living crisis, their own careers, their own money worries, worries about other family members and on it goes.

And for much of the time I'm quite oblivious to their needs. I've become a teenaged me who is happiest gaming or listening to music, with friends. 

I should start going swimming again.

See? No worries at all.

Then it dawns on me and I remember to consider others and that if they left something where it shouldn't be they were busy or tired and it probably doesn't bother them and after all it's not a big deal. 

But that mindset is difficult to sustain.

Dementia is a burden to everyone nearest you.

The last Bay

Back to tangibles...

Worked with Fyfe this week in Teddington. This is my penultimate job. Very simple - to take out a PVC double-glazed window and the bricks and lintel above the window and install brand new hand-carved Bath Stone features to an early 20th century semi-detached house.

Before and After...but can you tell which is which?

The PVC window was held in with just 4 galvanised screws and some mastic but it had been there 20 years or so. The lintel was odd but again like the terrible brickwork, was poorly constructed using pea shingle as aggregate so it was light enough for us to take it out quite easily.

We worked hard and effectively that week. Oddly enough my muscle memory was intact and lifting, sawing and everything else was fine. I guess walking the dogs had prevented me from atrophying too much.

The client was really happy and paid us on the day. It was a job he'd been wanting to do for a few years so it was a great relief for him to finally have it done. Lovely people - I've been lucky for the best part with clients. Only had a couple of cu....nutters.

As these things do, a sleepless Sunday/Monday night and the adrenalin keeps me going, then I crashed at the weekend. Fizzled out.

However, I hope to keep myself going  - this has galvanised me and like Baron Munchausen  I have shaken the dust and cobwebs off and am now striding around the world like a mighty Apollo...

I shall seize the moment with this new found energy and next week: garden-weeding and bramble-destruction! 

I shall use a variety of sharp objects and powered implements. 

Death to invasive flora!!!

Yes, gardening. At least I can do stuff around the house and garden. Being busy is difficult to maintain, but I should be doing odd jobs far more.

Let's see if I can keep the momentum going...

Am I still demented?

I don't feel demented...

So this has been a good week. I'm pretty compos mentis. 

I've had brain fog for so long I didn't know if I still had it anymore. It certainly doesn't feel any worse. Then when I stop to really analyse myself, the way I'm looking at the world, taking it in, trying to listen to what J is saying, putting one foot in front of the other, it's then I realise I'm as foggy as ever.

I just seem to be calm, reasoned, (some would say that this is definitely NOT me) cognisant and you would outwardly not know much was wrong with me. 

I'm not finding noise much of a problem, I was out with the goblins (gamers) yesterday afternoon and really enjoyed myself although I feel I may have said one or 2 things which might have been inadvertently rude. 

Sorry if I did.

Of course I know I'm not getting better, but I should revel in these good times as a trough will occur sooner or later, where I will find typing much more difficult, the slightest noise will get to me, and I'll be even more useless than I am now.

It's just the bumpy down-hill track of a long-term illness. 

I'm skill, me.

What's next?

I've a whole bunch of medical tests coming up soon - dementia as well as non-dementia related stuff.

It' s been noted by Professor Warren's team after studying my initial MRI scan from November 2020 that my FTD Semantic Variant diagnosis is in his opinion  atypical. 

We don't know what this means yet. This is harder for J to take than me, as I just add it to the list of shit and keep carrying on. 

We still haven't heard about appointments re the lumbar puncture and the MRI, so I'm sure it will be months before we find out what the diagnosis is and what if anything can be done about whatever it is.

V stressful for J. It's always more stressful for those nearest you than it is for you as the sufferer.

Support Group Angst

Had our monthly Rare Dementia Suppoort meeting yesterday.

I'm struggling with all the other demented folk. When you're experiencing mild symptoms and you see other people who can't speak, think or express themselves as fast as you, it is frustrating. 

Yesterday's session was difficult. 

Tragically having been a member of this support group for 18 months I've seen people getting a lot worse. One person has actually gotten better! But as she discovered her methods of treatment empirically the scientific community are ignoring her results. (see below)

Whilst the support groups were initially such a relief, they don't quite provide what most of us require. The bar is set too low for me and others. As individuals we are suffering a variety of dementia types and at very different stages. 

I'm not sure anyone's getting a great deal out of this at the moment. 

I don't know what the answer is. It's difficult for anyone trying to run these groups and I don't want to sound ungrateful. 

I probably failed on that last point, right?

Rude Words

As I found out recently, EMPIRICAL is a dirty word. At least it is to the scientific community. That's why - to some of us - when they do these RDS seminars online or wherever, they really don't want us to be part of proceedings or to hear what we have to say, so they have one carer whose partner died 20 years ago, and no dementia sufferer.

The word empirical is HERESY to scientists. 

That's why it's always going to be me doctor, you patient.

We just try anything to mitigate the symptoms -  throwing the ball for the dogs, CBD oil, dance, playing an instrument, cycling and other flow activities, vegan diets. What have you got to lose? And if there's something working, why not take a look at it and find out how?

I don't get it, but then again I'm dumb.

Till next time, cheers me sons. 

Gussets from hell!

Atrophy be Damned!!

Exclamation marks are the order of the day. Yes, I'm in one of those moods.

Days have been wasted by yours truly watching YouTube videos on my computer. They are my TikToks. I'm actually rather angry with myself for this as I'm wasting what life I have left.

So I turned the computer off and started reading that D&D adventure, and then I started to précis it, which I've found is the only way I can ever remember what the hell it is and then run it competently.

I am now  - for me - really on the ball and full of energy. It's lifted me up from a trough where I was getting pretty depressed, thinking I would not be able to DM anymore.

I'm my own worst enemy  - it's easy to fall back into just wasting your days away achieving nothing. I don't want to do that, so I turn my computer off and read and write instead. And it makes me tired, but in a good way.

The Exclamation Mark in Art.

(Dear reader: I lapsed and spent the rest of the day watching videos on YouTube...)

It's the weather forecast, stoopid!

So it's forecast to be the hottest day of the year. We've walked the dogs and and breakfasted every man, woman and beast (and other). J's been asked to travel to the west of England for work tomorrow (which is utter madness) and is concerned about tyre pressure, the risk of mechanical and tyre failure forefront in her mind, and her idiot bosses have called a meeting for the hottest day of the year.

Today they cancelled it.

I always wonder what takes these people so long to figure shit out. The meteorological centres use some of the biggest computers in the world. It's for our benefit. Why leave it to the last moment?

Fyfe and I are due to start a project in Teddington and we're sensibly taking Monday and Tuesday off as it is unhealthily hot to do any manual labour.  Many's the time I've worked in 30 degrees plus. You take on gallons of water and you sweat it all out - your t-shirt ends up white with salt - and in the evening you finally do a very low yield of pee that looks like creosote.

Very few things are worth that amount of toil - I'm not putting myself through it when it's not a matter of life or death.

I'm keeping cool by closing the curtains in the morning and keeping the doors shut. Leaving the windows open with the sun streaming in and you'll be as hot as it is outside. Makes sense don't it?

Plus I love to let the darkness enshroud me.

Holidays in Dementialand

Pubs

I was doing really well. We’d had a funeral, 2 big walks, meals out. I had coped with all the new people, the crowds (the hustle, bustle, noises and so forth) and then after a not very good meal we decided to go to the pub nearest to the restaurant - the best pub in town too.

Suddenly lots of people. I thought it would be relatively quiet on a Tuesday. The people we were with knew a couple at the bar - they went back years. Hugs, bon homie, chitter-chatter, old friends and everything that entails.

Something in me switched. I can’t grasp what exactly but I went very silent, looking everywhere else but the conversation. I went outside for 5 minutes but that didn’t do anything except leave me feeling colder. 

I guess I was hoping the four of us from the restaurant would be on our own having a quiet chat. I just wasn’t expecting there to be new people joining us. I don’t know why this is so difficult. It seems I slip a gear when this happens and can’t get going again. 

I guess I don’t cope well with the unexpected anymore

So I stayed there, in that space.

The old me would have tried to join in the conversation but like a roundabout going too fast I just couldn’t get the timing right to grab a hold and be part of it all. Nor, if I’m honest, did I have the inclination to even want to try.

The people at the bar were friendly enough. It’s just the dementia.

I think our friends felt awkward with my behaviour and I’m sorry about that. It’s not something I can do much about anymore, and some episodes are worse than others.

Oh god, it’s him…

Shopping

I woke up this morning and J and I decided to do some shopping. The feeling from last night was still there, as I entered shops with music playing and people milling about; lots of voices. I was finding the whole thing just slightly overwhelming. 

I put on my Sunflower lanyard.

(I’m never sure if people know what it means.)

Anyway, I tried on some approach shoes and while they fitted my weird feet, I didn’t like the styles. I don’t know about you (and why would I?) but some seasons I buy nothing as I find the styles and colours pretty ghastly. 

I had neglected to pack enough hiking t-shirts due to dimness/dementia, so I did buy 2 hiking t-shirts (cotton T’s can get uncomfortable on a long hike) with Jacqui’s help. I then said that we should abort the shopping sortie as it was just a fruitless exercise.

I’m now writing this. This evening we are going out once more to a restaurant. It will be fine. This sort of thing just happens now and again.

I’m just looking forward for it to pass over so I can return to the new normal. 

It can take days however.

My Neurological Diversity, innit?

Someone I was at school with sent me a friend invite after viewing my profile on Facebook. We didn’t really know each other very well, but she had read my blog and a lot of it had resonated with her. Amongst other things she had been diagnosed with autism. She said if she had not known she would have thought I was writing about autism - especially the need to wear dark glasses and noise-cancelling headphones bit.

We compared notes and have had similar experiences socially all our lives; not really fitting in to any one group, saying the wrong thing/ faux pas, and more. 

Yes, I know everyone does. 

But they really don’t.

It was very interesting anyway, and good to have a new friend to understand/empathise with.

Benjamin Buitoni

Reversal/Nostalgia

So I'm going backwards. I'm obsessional about Dungeons and Dragons - a game I played as a teenager which I recently took up again (as a lot of people have done) when the latest edition came out in 2014.

I've got back in touch with old school-friends as they were happy days for me. Precious memories. 

Well, the sixth-form was at least.

My favourite group is now Abba. As a boy I hated them, though did I secretly like them? I don't know. I remember thinking they were soppy as they sang about love and relationships. I was 12 when they split up, so I guess I was too young and/or the wrong sex. 

For some reason their music completely resonates with 52 year old me. Björn Ulvaeus says there's a happy/sad that that's part of the Swedish character, and that is very prevalent in their music. Lots of other studies show that the verse/chorus patterns and the sing-a-long-ability of their songs also resonates in our brains.

(However, some of the songs are deceptively difficult to sing and the harmonies very, very difficult!)

Jacqui and I are going to see them on Sunday. I'm wearing my sunflower lanyard for the first time as I think I will be an emotional mess. The concert is apparently incredibly immersive and emotional. 

I don't think, I KNOW I will be an emotional mess.

NOT holograms. Okay?

Dining Realisation

Last week J and I went for lunch in a lovely restaurant in Surbiton. We were the only ones when we arrived. Some soft funk/fusion music played in the background. It was really agreeable.

We hadn't been for a meal like this since before lockdown.

I was very much in the moment and realised how much I'd deteriorated. So much visual and aural information bombarding me. My brain foggier than ever. Smiling Jacqui in front of me looking so pretty. I was happy but I realised at that point I have about 5 or 6 years left. 

My grandmother used to say stuff like that at Christmas dinner. Lol. 

This realisation didn't make me sad. Those things don't anymore. It's just the way it is.

I'm DEFINITELY retiring after the bay window in Teddington (scheduled for July 22) and liquidating the business. Time to find something else to do, and enjoy what's left while I still can.

Lazy

One part of the realisation above is that I'm finding it harder and harder to motivate myself.

That feeling you get when you know you should be doing something but you're doing nothing instead. When you think of all the friends you haven't spoken to for ages and you still don't contact them. I know that I should clear the back of the van, but I don't. I know I should vacuum the house, order a skip, chase up the DVLA etc etc.

Nothing happens.

I should read that particular book in preparation for Sunday's session. 

I just about manage to do this, still.

I know, I know. You do that exact same thing too. 

Sure you do.

You've been avoiding me.

Remember me? 

Nice guy up the road. He has a spaniel too. We used to stop and chat. Have a middle-aged bloke moan. All good natured. I saw him the other day. He said "Hiya!" and turned right to go up the main road. I'm pretty sure that's not the way he intended to go as the park entrance is on the adjacent road, where he was originally heading.

I don't think he wanted to make contact.

I've had that on social media too. People I thought I had a long history of friendship with: those friends and acquaintances separated by distance or time who you knew really well back in the day. You'd been through formative experiences together, helped each other, fallen out, fallen back in; all the stuff friends do.

Silence from some. I can't help but feel disappointed when that happens. 

A few people (and they are a minority) didn't send me a text or post on Facebook when I did my dramatic "Notification of Dementia" Facebook post back, whenever it was. 

One family in particular really disappointed me by an almost total absence of communication. 

I guess some old friends probably feel awkward, or they may be thinking well, he was always a bit of faux-pas merchant or a loose canon; he must be bloody mental now. 

Or simply 'what do I say?, 'what can I say?'

That's me on the left and you on the right.

The fact is I haven't changed markedly since we last spoke. I am going downhill in many ways, but not so as you'd notice. Not superficially at least.

I still read the paper, have an opinion on almost everything. Yeah - still the same. 

Just more emotional, forget words, absent-minded. That kind of thing. Can't do noise - children's birthday parties would be hell.

(And the rest, but I won't go into details here.)

But it would be nice to see you. 😜