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.

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. 😜

Let someone else have the sun!

Chapel Life

I chatted to my naughty cousin, Steffan, while we were having the family gathering in April. It was the most we'd spoken ever. We compared notes.

The title above is how he described his upbringing. Did that resonate with me.

Our parents were forced to go to chapel as kids - as soon as they were adults they stopped going. But that doesn't really change much, except you now have Sundays free, for it was most of the day they attended.

Ah, the benefits of non-conformist repression. Knowing you’re born a sinner, last in the queue, to make way for your betters, never ever be late for anyone, to know your place in the world and just aim for the middle as it’s the best you’re ever going to achieve. 

And they've got you for life.

Yes - it’s the nuclear fall-out of centuries of chapel life, ingrained in families wherever those sinister little buildings arose.

For example, I bought my parents some good quality knives for Xmas as the ones they bought in the garage with coupons all those years ago are rubbish. 

Oni yw fy sbwriel o safon?

'Why are you buying us nice things?'  In other words, 'We’re Welsh - we shouldn’t have good stuff.' 

'I know this knife is as sharp as a spoon but it’s good enough for us.'

'My 2 pairs of nylon underpants will see me out.'

Etc.

My parents' generation were told if you were bright the most you could aspire to be was a school teacher, which is why so many Welsh teachers worked in London schools. 

I met an old Welsh guy who pointed this out to me on a business networking social I did years ago. 

“Don’t tell me what your parents do - they’re teachers.” 

How did he know? It’s all you were told you could do if you were bright and Welsh. 

'I told my careers master I wanted to be a Management Consultant. They laughed at me ‘You can't do that; you’re Welsh!’'

You may laugh at that. But that is institutionalised repression in a nutshell;  and it took out lots of capable people for centuries, and all the while everyone else doffed their caps to their betters. 

And it filtered down to me and my cousin. And no doubt others.

I guess rugby offered a middle finger to the mine-owner - the only opportunity to vent the frustration. It's one of those situations where you can get one over on your dominant neighbour. It makes you feel good for a bit when you win but ultimately it doesn't really change anything for the better.

Back to work

Angry (again)

I was having a chat with another dementia sufferer yesterday. I'd wanted to make contact with her for a while as we were diagnosed at the same time and with the same type of dementia. She's bright and opinionated (like me!) and about my age too

I thought it would be valuable to share our experiences and how we cope with it all.

She said she goes through periods of sadness about it - the slow conveyor-belt toward an undignified death, what it's done to career and relationships etc.

Likes a pipe, does our Jacqui

I too get sad about it all, especially what it's done to my relationship with Jacqui. The core has been eaten and we are just left with a hollow middle. Outwardly it looks like a marriage but long ago the heart had started to erode. We have had separate beds for a couple of years now (maybe longer). When we stay  away or have friends over we bunk up together like old friends would. We still love each other, go out, share the chores, do the things old couples do, but the other aspects of our marriage have gone.

And that does make me angry.

I can't blame what's happened to us entirely on the dementia. And having dementia doesn't mean I'm always to blame when there is an altercation or disagreement. But it certainly doesn't add anything positive to the mix.

Zero-challenging work

I keep saying this will be the last job I do. I've been working for 8/9 days on a church in Barnes. That one. It was very straightforward work. The physicality was a bit of a shock to the system, but the tiredness I'm feeling is not physical, it's mental. Mental tiredness for doing a very straightforward bit of grunt work.

It takes that much out of you to accomplish what in the past you'd have considered an easy day. I can feel pressure in my cranium - as though I need to trepanate myself to let the steam out.

So glad I went private

So I end up flopping around the house for a few days. If I feel better the next day I try something out. Yesterday (3 days after the last full day of work) I wrote some of my D&D adventure. It went really well. As soon as I knuckled down all the thoughts and ideas that had been festering/gestating (take your pick) all poured out onto the page and made sense. Quite a few typos...well, mainly typos in fact, but I corrected them all and I can't wait to run it now.

Going to have a look at some more jobs next week. Again, straightforward jobs. Someone asked me if I was only taking jobs if they provided the right challenge. That sounds like something you'd say in an interview. I would answer that I want jobs which provide almost no challenge whatsoever. Those are the jobs I want. 

I puke when I read posts on Linkedin.

Vampire

I've become rather averse to bright light (as this headline would infer). In the beginning (Biblical reference) there was noise. The noise is a pain. It's difficult to filter out. Like a single track recording of 2 separate sources, they intertwine to become one incoherent jumble.

I noticed when I was on holiday a year ago in The Lakes that if I was in an old dark pub I could filter out noise and concentrate on conversations far better.  When we were standing outside with road noise and sunlight I found it almost unbearable, like my senses were being overloaded. Maybe this is what people on the autistic spectrum experience.

It may be nothing to do with dementia whatsoever, just deterioration of my eyesight. No one else when I mentioned it in our dementia support group suffered with this. 

I didn't mention the protruding canines did I?

Time Out

Negativity

 I realise I've crashed below the negative threshold AGAIN and can't seem to get out of it. I know I need to be more upbeat. Having read the last few blogs, with one or 2 exceptions they have been very maudlin and depressing; cynical and nasty at worst. I've named people who get up my nose or who I have some beef with, and I got told off.

Yeah yeah yeah...

I've been getting stuck on current politics and personalities from my past. 

One of the things with FTD is a total failure to plan for the future. It drives J nuts - at least she knows that it's not really my fault now. I guess that's why I'm always looking to the past. Every morning I'm reminded of something from my past - a person or a particular job or project I was doing. I really get stuck on it  - like a curse. I relive it as though it's a video playing in my mind, and it repeats on the really niggly stuff that grates. I've always had this to an extent it's just that it is turned up to 11 now.

(Written a day later) It's difficult to get myself out of the mire when this is going on. But at present I seem to have emerged from it - head up, looking around and breathing in the air. 

It's pretty good really. I hope I stay here for as long as I can.

One thing about FTD that we've only recently found out (J saw it on a Rare Dementia Support Q&A session) is that the Temporal Lobe isn't just responsible for 'ABC' language, but all language: the language of society, the language of decorum. 

In other words all the social mores that were learned from being a toddler onwards will diminish. You don't understand that people could be upset at the wider ramifications of a single action or utterance; that by calling someone by name a certain thing, you will upset people and you and your partner may be excluded socially.

Difficult one for me because with a lot of people I don't really care that much if I never see them again. However, J does, and can see the harm it will do. 

Amplify this over a few years and you've ostracised everyone. 

Moods

My mood fluctuates between angry at the world and various individuals, to one of relative calm, or my version of it at least.

It happens that I wake up feeling okay every day but I can then fall into the dark side at the drop of a hat. 

I'm trying to analyse what sets me off. It doesn't appear to be alcohol or sleep-related, so I'm still in the dark as to what the trigger or triggers might be.

Break

Fascinating. Simply fascinating.

I'm going to take a break for a while until I've got something to say. This blog has gone somewhat off-piste from it's noble beginnings (!) so I'll be doing fewer posts but hopefully better ones, targeted towards living with FTD.

Ta ta, as they say.