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.

My Sporting Life and other Bollocks

Sport

I could never throw overarm. I'm better now but if I try to throw with any force it can go anywhere - from straight to my feet as I just don't let go in time, to any possible tangent other than the intended target.

I was always the last to be picked for football at school. Even after the kids who bunked games because their little finger hurt. I was good at cross-country running which I enjoyed. I actually did enjoy football but I was obviously rubbish at it.

It's malcoordination: my brain just doesn't do things automatically that others' do. I can barely dance unless the music really takes me. I've never really enjoyed it or found it a natural thing to do when listening to most music. I can feel the rhythms and dissect the layers of rhythms and beats in my head in a piece of music and totally immerse myself in it all, but it never translates into anything terpsichorean.

The footballers at school wasted no time in telling me I was crap. I don't recall telling them they were crap at Maths or Art. 

Maybe I did. Memories are unreliable.

One time I got huge praise from our games teacher. We were playing 11 a side and I was in defence. I got the ball and saw a good player, called Paul Jepson, in space and hoofed it up the pitch. By chance it landed on his foot and he was able to set up a goal scoring opportunity. 

Mr Roberts (and this is games teachers down to a tee) said "I know you all think he's crap, but Geraint got the ball, he looked up, saw Jepson was in space and passed it up there where he was able to play it. That was the best move of the match."

The footballers all murmured and muttered and looked resentfully at me. I basked in my moment of glory.

Years later when I 27 and living back in Wells, I was playing Sunday league football. I didn't really enjoy it as football to me seems to bring out the worst in some people - toxic masculinity. I turned up early for one match and waited in my car. 

Another car pulled up - it was Martin Lovell who was a terrific footballer and sportsman. And he recognised me, and laughed. 

And he sat there in his car still laughing at me - 11 years after school finished. Time doesn't move on in these small towns.

I wish I'd had his sporting prowess, but I'm equally glad I had none of his charm or interpersonal skills.

Narnia

I do go on about this, but I'll do it again anyway as I have dementia and am approaching grandparent age (or greatgrandparent age if on a council estate). My favourite book when I was 9 was The Lion The Witch and The Wardrobe (TLTWATW), and I read it twice as I loved it so much. No one mentioned that it was one book of seven.

So I'm currently going through all 7 books, reading about one a day. I'm really pleased I can still read as I perhaps won't be able to in a few months or years time.

They're my kind of books - edited perfectly so there is little guff, and there is something going on all the time - the pacing is fantastic. 

The Horse and His Boy is the weakest of the first 4 by far, and I'm currently reading Prince Caspian which is in my opinion the second best after TLTWATW.

It's wonderful stuff - the perfect Christmas series of books.

I'll be reviewing all seven of the series in the next instalment.

Not enough Gaming

I've ordered the Elden Ring. This is a huge Fantasy Role Playing Game for my console. I could no longer wait around for other people to join in or organise themselves to play TTRPGs (Table-top Role-playing Games) so I'm going back to the Xbox and I'm going to immerse myself (guilt-free) in someone else's fantasy vision rather than my own.

Saying that, I am Dungeon Mastering 2 back-to-back Drakkenheim sessions on New Year's Day and the Bank Holiday Monday. I just need this level of thrill and excitement and immersion most of the time and I'm not getting it.

 My name is Barbie. I love you very much.

Reading is good. Watching can be good - as  fan of The Witcher TV series I was enormously disappointed by The Witcher: Blood Origin which was a lazy and hackneyed attempt to cash in of the TV franchise. I got midway through the second episode but it was terrible. 

Much better are the Anime series such as Dragon Age: Absolution or DOTA: Dragon's Blood. 

Apart from that I don't watch much TV. Especially lazy panel game shows which all seem to have any 4-6 of the same pool of comedians on.

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.

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. 

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.

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. 😜