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...

My Brain has Stalled...

Have you seen my sausage?

 I talk a good game at times. Like a lot of people I have great advice for everyone on how to live. 

Today I am on the struggle bus, as J calls it. 

We walk 3 dogs every morning. Today X's Dachshund ran off in the woods. For 40 minutes we were in stress-city calling him, chasing him, calling him again. Hearing him bark in the distance. 

The other 2 dogs  - Wilbur especially - were getting stressed by it all. Why weren't we moving? Canine panic!

For us humans it was worse on J than it was for me. The very thought of losing another person's dog is so horribly stressful.

Eventually we got him. He had crossed the road a few times (not good) and I managed to lure him from 20 feet. He'd obviously scared himself witless and it was a huge relief to all. 

When we got home J had to jump straight into work. 

That's not the best way to start the week of course.

I can hear J upstairs. Sounds like she's up against it at work but I may be wrong. 

Me, I just can't get going, which is why I'm writing this.

I had a list of things to do - admin things relating to closing down my business. They'll wait till tomorrow.

I have some other things to do - physical stuff like putting some weeds and plants through the garden mincer and cutting a tile for a neighbour's DIY project. I can do those and at least they will be the boxes that I tick today,

Let's not set our sights too high today: listen to my body; listen to my brain.

I ❤️ Unimogs

Like a lot of men my age I'm notoriously difficult (in general too it must be said) but specifically in this instance with regards to buying presents for. 

So for Xmas my family had taken note of me extoling the many virtues of Unimogs - 4 wheel drive utility lorries made by a division of Mercedes - so they got me a driving experience with one!

Now me being me I left the gift card on the bookcase and did little about it as with FTD your executive functions become increasingly inert. After all, it's much safer here in front of the computer surrounded with D&D books.

Cue stepson Ben who prompted me to act, and we booked the session in for Saturday 20th August. We drove there - 5 of us - (leaving the dogs to be capably looked after by a neighbour's son) and had a very pleasant afternoon at https://tanksntrucks.com in the heart of Kent.

I'd never done off-roading before but it was really fun. Unimogs are quite different to regular vehicles. The 1984 model I drove had 10 gears and lever to make it go forward or reverse, so it was possible (if you were mad) to drive it at 70MPH in reverse. 

It's a very mechanical vehicle and and a very enjoyable experience pootling along. 

I would thoroughly recommend it. 

By the way, I was knackered in the evening, falling asleep on the sofa. J pointed out that it was not the 45 mins of driving the Unimog, but the socialising I had done that day that had done for me. 

And she was spot on.

Dream car...

What is there left to do?

• Sell van
• Liquidate (or whatever term they use) company
• Transfer stuff over to me after taxes etc
• Sort out the garden
• Decorate J's bedroom
• Decorate Ben's old bedroom
• Other stuff.

That is a lot of stuff. Easy to become quickly overwhelmed. I must break it down into smaller pieces or I'll be having sleepless nights. 

There's always so much to do isn't there?

Dementia Boiling over

 I'll fight you for a beer

Having FTD BV/SV isn't great. Well, it's shit actually. I get by. I'm keeping busy and active and that's pretty good for me. 

I did a load of gardening last week, filled the skip, ordered things for the house. God - I'd let everything slip for months and months and now there's mountain to climb, but I'm breaking it down into doable chunks. It's good for me to keep active - have lists of achievable tasks for each day and it's good for my mental well-being.

But however much I do, I still have dementia. And it comes to the surface when you are least expecting it.

On Saturday I was at a friend's house. It was a birthday party. We were all sat outside with the blistering heat and the 11 year old daughter of our host was fetching us drinks the whole time.

A new couple joined us, sat at the other end of the table. He had one of those voices that just carried above all others. A sort of unfortunate nasal South eastern accent. He and a woman were talking politics. 

He said a couple of things that jarred with me. "Margaret Thatcher. She had a job to do." It was all sounding rather Daily Mail to me. I had to leave the table.

After a relatively short time everyone apart from him and the woman were indoors. Later, after even more beer in the heat, he was talking to J. She flailed her arms around, gesticulating. 

I couldn't hear what was being said, but neither could I help it anymore. I stormed up to him to berate him of his Daily Mail bollocks and the fact everyone came indoors leaving him outside as that's all they could hear was his voice talking shite.

I was quickly ushered away by everyone.

I'm afraid this is probably the future. I'll expect to be hit a few times in the short and long term. And at the age of 53 never having had a fight in my life, it's probably not the best tactic.

But at the time I was unrepentant and angry at this guy's views.

And another thing...

I woke up sweating with alcohol in the early hours and made my way down to the hammock beside the pool (!) and expected J and everyone else to be furious with me. 

When J found me she was really sweet. I wasn't expecting that reaction. Oddly no one seemed to mind. Maybe I'd said what they were thinking. Or maybe the waters had been calmed with everyone being told I had this weird dementia.

I was too embarrassed to ask. It was S's (our host's) belated birthday party and I'd presumably upset the evening, or had I provided the entertainment? 

We had breakfast and drove home.

We have another 'do' in the near future where I know there are 2 people who drive me nuts with their pro-Putin right wing views. I think avoidance of them and alcohol will be the order of the day.

Improvisational Skills

I DM'd some downtime for the players in last night's session with my Monday crew. You may know we have a WhatsApp group called D&G which was set up before I joined. I asked after a month or 2: 

- Why is the group called D&G?

- Dungeons and Dragons!

- No that's 'D&D' not 'D&G'.

- Oh.

They're all dyslexic, see. No one had noticed.

Anyway, the players finished one part of the adventure. It's kind of done in chapters - modules in old 1st Edition - which they have to complete, and then they have downtime - like a rest back in the town where they live, with minor events thrown in for good measure. 

They had rescued a dwarf called Morley from a hermitage on an island that was under attack from some aquatic zombies. They later revealed to the dwarf that there was a price on his head. Morley, suddenly terrified, pleaded with them and told them he'd been set up.

From here on in I basically improvised a story with counter claims and subterfuge with a powerful local merchant who is very popular with the townsfolk, despite being an utter crook. None of this will play to any single group's  benefit. Any outcome will be a Pyrrhic victory at best. 

Just like real life really.

The session went really well and served to enrich the environment with role-play and (almost) zero combat. 

I really enjoyed doing it and it gave me a lot of confidence and contentment with my neurological faculties, in stark contrast to Saturday night's frolics.

 

 

The Sedentary Life Calls

Busy as a bee

I don't know what the hell has happened with the formatting here. I fxxxing hate centred or justified type. And yes I have been trying to get the formatting back to ranged left.

I've been really busy recently. Following on from the 6 days of work (I worked Monday too putting a sundial pedestal back for a Royal personage in Richmond Park) and so I thought I would continue with the momentum and do lots of work around the house - work I've neglected for months. J is simply too busy with her job to do stuff, so it's only fair I do the janitoring.

And then today…walking the dogs with J. She lets Chippy off who’s going ballistic and he shoots

off. We then saw that he’s not running after squirrels but some deer - he’s a dachshund too, which is comical yet still unacceptable.. Panic takes us. 

I’m wearing sunglasses at 7 in the morning in the expectation that within half an hour I’m really going to need them. I start running not looking at the uneven ground and turn my ankle. 

Cue Malcolm Tucker impression.

Oh blast...

So this throws a spanner in the works. I’ve turned ankles and sprained wrists all my life so I know how to deal with them (foot up, ice pack on and off in 20 minute bursts).

Back to the walk and we searched for Chippy for 15 minutes or so. We returned to the spot where he'd disappeared and there he was, coming from the other direction, with a euphoric, deranged face on.

But I’m a bear with a sore head. Don’t come near me.

I will bite. Or throw something. Or worse. 

Oh, if I had napalm right now...

Thing is while I still had the bit between my teeth I was going to start decorating a bedroom next week. Hopefully with a rest I can still do that. 

If not I'll read that ever increasing mountain of D&D books.

Bring on Autumn. The coolness, the water, the colours, the perfumes, the relief from this un-British heat and drought.

So next week we are thankfully forecast lower temperatures and rain. I read today our wonderful privatised water utilities haemorrhage billions of gallons; Thames Water alone 600 million gallons of water A DAY. We have the only privatised water companies in the world, and when they’re not pumping thousands of tons of raw sewage into our lovely rivers they’re awarding themselves and their shareholders millions of pounds in dividends. 

Makes ya proud, don’t it?

Think of the animals

Awful pictures of wildlife that have been killed by dehydration. I’ve got an insect water feeder coming today.

I get very depressed and sad about animals. We treat them so awfully. I still eat meat but I’m veering towards vegetarianism. With the passing days I like to think I would miss meat less and less.

I suspect this is to do with FTD - even though my empathy to humans is diminished I have heightened emotions. Especially towards maltreatment of children and animals.

Current Music and Media Tastes

I’m very much in a practical mode at the moment. I’m really not interested in reading D&D books (despite having bought yet another adventure book…).

What I’m currently into:

George Duke - Fusion

Banda Black Rio - 70s Brazilian funk

YouTube - barely watch it. Ditto Abba.

Samba makes me really happy - keeps my spirits up. It just has that vibrancy and vivacity that is absent from say, this.

Especially when George Duke plays it on Brazilian Love Affair. Don’t like the sloppy R&B stuff, but I do love the fusion!

It’s too much noodling for most. I love to be bombarded with it. I can’t get bored with it. 

As you were.

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.

Never mind the heatwave, here's some bollocks

Culture

Less is going through my mind than ever before. Dungeons and Dragons - mehh. Abba - barely listen to it, and that's despite having spent hundreds more on tickets to see them twice more! I seem to be less into stuff, but on the other hand I'm very much back to exploring my old musical tastes - back to progressive music: Gentle Giant and Frank Zappa especially but lots of other interesting things too.

I love this. But then again who doesn't?

Since watching snippets of Glastonbury while on holiday in The Lakes, I've been revisiting Paul McCartney. Everyone talks about Lennon being a god but a lot of the stuff he released after The Beatles is unlistenable, especially the stuff with Yoko Ono. 

Talking of McCartney I remember when Mull of Kintyre was no 1 for 6 weeks. I was amazed to find out the song was only 4.43 long. Feels like half an hour when you listen to it. Funny how We are Sailing by Rod Stewart which was also a massive hit in the 70s never gets played any more either. 

That's a good thing.

Yes. This really is LIVE.

Plans

So not only do I have no get up and go I have a lot of stuff to do. J is away for work so I walked the dogs before the heat really sets in and now I'm writing this; not so bad so far. 

Got to do some more stuff: write some D&D notes and really get on top of things. Last night was pretty lacklustre (the heat didn't help) but I just couldn't get round to doing much in the way of prep for the session. 

I also have to have a hairdo and moustache and beard trim (which I will do next) and try and keep busy but pace myself in the heat (32' today - v hot for the UK).

Politics

Last week I was glued to the computer, radio, TV and news feeds and papers. I couldn't get enough of it.

 

It was hilarious. 

At last the worst Prime Minister in HISTORY is gone. But actually he hasn't - he's still there squatting in No 10 Downing Street. And now the most venal collection of politicians in history are all fighting for the top job espousing their credentials, integrity, and principals.

Excuse me? 

Fifty of them resigned in 36 hours to save their own necks. They were all complicit in the lies and hypocrisy of Johnson until they knew it was all over.

And the likelihood is one of these will be our next PM. 

Health

As a DEMENTED I'm supposed to crave sugar. I have had stages of eating Tangfastics and also liquorice - that was a big food fad for me. However I now get my sugar in the far more convenient and refreshing form of BEER.

The effect of this is initially pleasure and as an aid to relaxation which leads to conversation. 

According to Thomas Jefferson, "Beer, if drunk with moderation, softens the temper, cheers the spirit, and promotes health." 

However having not drunk in moderation I now have a beergut. Bugger. 

This means I am no longer a SEXY.

And why do alcoholic drinks taste so good the older you get? A cruel joke of nature I'd say.

So anyway, despite the myriad gorgeous flavours waiting to be imbibed and the wonderful feelings and conversations to be experienced, I must curtail my consumption of beer. 

Bollocks.

Second Opinion

National Hospital for Neuroscience and Neurosurgery 

Monday - To the National Hospital for Neuroscience and Neurosurgery for a second opinion on my condition. 

The journey in was strange. I haven't commuted in to central London for years, so I wasn't looking forward to the crush of commuters. The legacy of lockdown is that people are working from home, and we got seats on the train to Waterloo and the Underground. Really weird, for someone like me who took the tube for decades to see the change.

When we arrived we were seen immediately and went into an office with 2 neurosurgeons and Speech and Language Therapist god, Anna Volkmer. We were later joined by Professor Walker himself who asked very specific questions and suggested to us that he thinks something else is going on with me. Not just FTDsv and FTDbv but something else.

I did a load of memory tests recalling numbers and pictures, physical tests with one of those hammers to test reactions and also tests to determine my coordination. At one stage there was a huge amount of talking in the corridor which made me unable to concentrate on a visual test and I shouted "Can someone make the noise stop?" Christ.

As J said, it was good they saw that, as I flew through many of the tests with flying colours.

I then had more extensive testing by a neuropsychologist for a further 90 minutes. Very tired by the end.

I'm having an MRI scan soon and a lumbar puncture to ascertain what other stuff is going on. J reckons it could be Lewy Body Dementia but it will all be revealed in due course.

Step this way sir...

It was a bit of a pisser to hear this - that there is another dementia prevalent. But after 15 minutes I was fine with it, having stoically absorbed it.

It's the others closest to you who suffer more with the anxiety of it all. 

Further Notes from Dementialand

Pub Landlord

Second week of the holiday. It started badly. We discovered our cottage was on a main road with barely a pavement separating the house from the road. Nowhere to park to unload our stuff, including shopping for the week. There is a pub opposite our house which everyone told us was great. So I parked in the pub car park to unload and started doing so. 

Pub landlord comes out and points to the painted sign on the tarmac ‘Pub patrons only”. I said yeah, I’m sorry - I’m just unloading as you can see and we’re here for the week - we’ll be in the pub later. 

If you haven’t got a pint on the table right now, move your car. 

I said I’ll be down your pub later. 

Then a lecture about holiday cottages spoiling the villages; hey, I get it. I agree with you. But can you not just…

No.

So I go to the hotel carpark, book the car in for a week, and shlep all the stuff 100m back and forth from the car to the cottage.

And after that I never went to his pub. That’s the deal.

Fight Club

I seem to be having particularly restless nights, waking numerous times, the duvet everywhere and some insane dreams, involving anyone and everyone in my past who I feel I have unfinished business with. People I worked with, old school friends, old school enemies and so forth. 

The dreams are sometimes quite extreme even by the standards of the horror/slasher genre. 

You know that every morning I wake up there is a nugget from my past, embedded in my consciousness. It’s usually something where I felt embarrassed, behaved selfishly or upset someone, or spoke or acted inappropriately. That kind of thing.

Inner me.

(I’ve come to realise I probably am on the spectrum: never knowing how to act or having the confidence to be myself. Always looking to emulate or even copy others to try to fit in and be socially accepted, and mask my social anxieties and hang-ups. Even my chosen profession of stonemasonry is all about copying, in this case the work and designs of people from the past.)

 

It plays on repeat in my mind, until I think I’ve rationalised the situation: what I said, what I should have said, what I could say to the person or people involved now, face-to-face. Should I apologise? Do they even remember? Should they apologise? And on it goes. 

And just when I think it’s all gone away it springs up again. It’s particularly hard at the moment. I shout out ‘Fuck off!’ for it to go away, sounding like I have Tourette’s or Schizophrenia.

I also feel more and more detached from everyone, and I think they realise that I am drifting away. I shouted impatiently at them the other day. 

I wouldn’t have done that the previous holiday.

Pass the SALT

Apparently I said a few sentences the other morning with all the meaningful stuff missing. I was trying to describe an angle grinder my mate bought from Aldi and nothing made any sense to anyone. That’s pretty worrying as it would indicate I need a Speech and Language Therapist (SALT). 

A big day of Neuropsychological tests on my return home. This will be an exhausting day but worth it. 

I hope.

Walks

Despite the negative bits it’s been quite nice so far, but the first week was especially good as we were in Keswick which just feels lovely to be in, and we were staying with J’s sister and husband who are great. 

This cottage is nicely furnished but the village is bleak, stark. There is no warmth here. 

We did a big walk yesterday and some good ones last week, but little Stan has hurt his paw 🐾 so I’m staying in with him and it also gives me an opportunity to write this. 

You’ll be pleased to know we did go for a little walk together locally and he did a massive 💩.

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.

ABBA VOYAGE Concert Review

Journey

You arrive from a little unknown station in the East End called Pudding Mill Lane. Straight out of the station and there is the Abba Arena. It seats 3000. And yet it is not an eyesore in the area at all. Maybe it was always there? Seems to have been.

We entered the foyer. Calm, all-wood vaulted structure, bars everywhere with food stalls and shops. It's crowded yet calm, just like a Nordic airport.

I can't remember if at this point I put my sunflower lanyard on.

I certainly had a beer though, and J and I bought a couple of t-shirts.

All the people working there were really happy and polite. Nothing like the feeling you get of being treated like livestock at lots of other venues.

And there's barely any queueing. 

We had a hot dog and did a bit of people-watching, as you do. Some people had dressed up. J was wearing something or other and looked spectacular. The feeling was really friendly. Everyone on earth seemed to be represented here, young and old. And we were all here for one thing.

So we go into the auditorium and there is a large cinema like screen showing an animated forest scene with the occasional will o' wisp  in the background. Snow gently falls. Ambient music plays.

We chat to the people next to us. I'm looking at my watch.

WOW!

And the concert starts  - everything is pitch black, and the 4 members of Abba rise through the floor. It must be said that the light on the figures is key to the look. It really makes them look as thought they are actual corporeal figures right there in the show. Holograms are translucent and rather washed out. These are NOT HOLOGRAMS, but 2D projections onto glass, created by George Lucas's effects company Industrial Light and Magic (ILM).

The attention to detail is astonishing, and the movement with the lighting is incredible. 

They are there, real, right in front of us.

Frida is wearing a red feathery cape, and Agnetha a blue one. There are big projections to the side of the stage which show them close-up. It must be said Agnetha is the least convincing. Slightly rubbery and not as pretty as she was. Benny is the most convincing as I guess his face isn't as expressive and he has a beard. It kind of distracts from the figures on stage at times, which is where the realness is.

Oddly enough, I didn't cry. The lady to my right did, and Jacqui cried 4 times I think. I guess I'd been through it so many times in my head and built it up so much that I was somehow over it. 

Other things - there's a large animation section in an Anime style which covers 2 songs and didn't seem to fit in to the rest of it. We were all there to see the ABBAtars - not a pop video without the ABBA members in.

However, when all is said and done, none of this detracts from it being a 5 star experience. I'd built it up so much I was expecting perfection, and nothing is of course. This is totally state of the art, with 5 (?) costume changes and a BRILLIANT band who play live to give it that punch of energy you need at a concert. The light show is incredible and the figures dance and move as ABBA because THEY ARE ABBA!

Highlight for me was 'Lay all your Love on Me' which they performed in their Tron outfits. No figures on stage at this point, and shot as if a drone was moving around above them And then from close up it zooms out on Frida and Agnetha and a Tron-like maze of vector graphics starts to appear on the ground beneath them.

Then the whole gigantic display appears to flip 90' back to the horizontal and all 4 members are on stage performing, on another planet. It was jaw-dropping.

Wow.

Conclusion

It is an incredible experience. I shall be going back AT LEAST TWICE. I need to take more people to see it and experience it with me and wallow together in the wonder of it all.

As they did with their pop music back in the 70s, ABBA have set the bar to an entirely new level. Go and see it. It's ...well, maybe a new word will have to be created to describe it.