Behavioural it is then.

 Angry lever jammed in the ON Position

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

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

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

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

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

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

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

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

One of those clients

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

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

I didn't though. 

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

Bye Bye Van

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

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

That's pretty significant I'd say.

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

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

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

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

Nah.

Next Chapter

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

Evil Incarnate

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

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

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

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

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

Still got the gaming, Sundays, Mondays and Tuesdays.

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

 I feel better now. Thanks for reading 🤓

The Truth about my dementia

 The Grim Bit

What to write anymore?

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

I suspect it's lost its way a bit.

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

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

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

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

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

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

We then got my FTD diagnosis.

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

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

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

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

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

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

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

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

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

But this is where we're at.

Mitigating the Inevitable

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

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

Aren't dogs brilliant?

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

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

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

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

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

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

It's cathartic, if nothing else.

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

All things considered I'm doing okay.

I'm okay.

SHUT UP GERAINT

Nothing to say

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

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

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

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

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

God it's easy to ignore those. 

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

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

D&G Decline?

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

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

Maybe it's just my perception.

Perceptions are everything though. 

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

They are here...

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

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

Increasingly separated from everything until there is nothing.

Oh well, look on the bright side.

😶‍🌫️

Finally Retiring

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

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

I'm not really on smack by the way.

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

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

Well, I intend to of course...

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.

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.

Optimist, pessimist or other?

As someone who was a year ago diagnosed with a rare dementia, I have been told when stating a fact - that death occurs 2-20 years from diagnosis - that I am being negative. If being negative is looking facts square in the face and accepting them, then I am guilty. My condition is the elephant in the room and I have to live with it. Mindless US-style positivity rings hollow in mine and most British ears, "Have a nice day!" from an American shop worker sounds unerringly upbeat. In a British accent the chances are the tone is more nuanced, more sardonic or even grim. It is not in our nature to be relentlessly upbeat. The positivity industry (for that's what it is) sells a lot of books and is a result as James points out, of a rare pocket in history of comfort and denial of others' suffering. The most egregious example is probably Rhonda Byrne's 'The Secret'. 

Pessimism is ok if you always expect the worst, as at least you will be pleasantly surprised from time to time. I prefer stoicism myself. 

The brilliant James Marriott elucidates better than me:

https://www.thetimes.co.uk/article/pessimists-are-not-immune-to-positive-thinking-ftsjx7xzl?shareToken=6b6308a13b0ef7ba8fd0dcff824abe62&fbclid=IwAR3s2muyNr39SM8OcCBqNTCvL-_v0jSg4-TAqbDWXJcr4mfVENfODZlgwcg