Who's demented now??

London comes to me...

Me old cor-blimey geezers came up from that London: Gerry and Allen. 7 hour round trip. They met the old folks who thought they were wonderful (they don’t know them like I do).

Dad brought his fishing flies in as Gerry is a keen fly-fisherman too. He also cornered Allen to talk about cars - Allen was driving some huge Mercedes SUV.

My Dad - 'The Chatty Welshman'!

When they first arrived I was slightly discombobulated seeing familiar faces in my home environment - does anyone else get that or is it just me? People in their contexts or out of their contexts? A bit like a wedding where all the people compartmentalised in different parts of your life come together. Like a rabbit in headlights - felt slightly unreal, dream-like.

We did the Lambeth Walk through Wells - saw the cathedral, Vicar’s Close and Bishop’s Palace. I think they liked Vicar’s Close best. 

'Mad' Allen Osborn and Gerry 'Chopper' Boyle

A couple of Chelsea Smilers later we had lunch at the S&P. It was great. Lots of good-natured swearing and laughter. And also comparing notes about living in the sticks and the wacko racist nutjobs who do little or certainly less, to disguise their bigotry.

Really nice to see them. Much appreciated. 

...and I go to London

Despite the lovely day, I slept very badly that night. I just couldn’t get to sleep with underlying stress about travelling to London and so forth, and then I woke up way too early. 

I used to feel like that when I was running masonry jobs, thinking everything would go wrong. Lost a lot of sleep over a number of years.

Fell asleep several times on the coach trip on the way up. Each time I jolted awake, thinking I was about to pee myself. Anyone else get that?

Oh, okay then...

Got to Hammersmith pretty much on time. The MC on the coach has thankfully stopped making that joke about Ebaying lost property. Got out and jumped on the tube, to go to Piccadilly Circus.

Nice afternoon - but I had a heavy bag in tow.

The fashions in London at the moment are completely underwhelming. Baggy faded jeans, earth-shatteringly horrendous baggy woollen cardigans, beards and dresses, and ultimately look like you can only afford to dress out of a jumble sale.

Zero-style.

Ugly, unflattering clothes.

I walked to The Ralph Lauren flagship store. I'd recommend anyone to go in there. It really is something else. Like an Ivy League university from the 1930s in London.

As with all things, they’ve stopped making the one thing I always bought. In this case I was after RL Sullivan jeans, Buitoni-fly and no stretch. They even had a cardigan I was tempted by - half-jacket half cardigan. It was in cotton silk. 

I know, I know. Too many buitoni but they’re not plastic and at least it’s not regular soft fluffy wool. More like a jacket really.

Yes, that's what I will tell myself. It's not a cardigan, it's a jacket! 

(Remembers being admonished by upper middle class family 25 years ago: "It's not a sauce Geraint! It's a jus!")

I know, I know. Only £549.

Great plastic-surgery disasters of Mayfair

Filler here, filler there; filler everywhere. The unfeasibly rich doing their utmost to reclaim their former beauty and paying the price for their vanity.

Narcissus with botox.

Some are so grotesque they look like they're wearing a plastic mask. Demonic.

Body dysmorphia - must be.

No, you look great. Honestly...

Wimbledonia

That evening I stayed with Sophie and her daughter Olivia who I hadn’t seen for years, and who is now a confident young woman. 

All the young adults I knew as kids now seem more mature than me.

We had a lovely evening. I slept for 2 hours when I got to Sophie’s as I was shattered.

We had an amazing Chinese meal from Good Earth - a London chain. Just astonishingly good quality.

I felt like sending it to the 2 Chinese takeaways in Wells to show them how it SHOULD be done, rather than the care-free slop they produce which they then puke into the plastic containers.

I heard Sophie leave around 7.30 am. I had a shower, Oscar the lovely 12 year old brown lab was unresponsive at the top of the stairs, then had a banana and a cup of tea and left. What a beautiful road - huge bay windows - and front gardens. A conservation area too. Must have been built in the 1910s. Mostly occupied by families it seemed.

I looked up the house prices on Zoopla. Wow. 

The National Hospital for Neurology and Neurosurgery

Got into Russell Sq and did my usual of going to Pret for breakfast. Always a ton of foreign students around. Sat there and watched the world go by and do its thing.

Prof Warren said while I may or may NOT have dementia, the Semantic Variant diagnosis I originally had was incorrect.

I said I felt slightly fraudulent - so do I have dementia or not? My behaviour certainly changed and I got crazy angry until the Sertraline kicked in. And I do have problems with elision of words. My brain fog is as real as ever and despite my neuropsych tests it's increasingly opaque. 

He assured me it’s nothing to feel fraudulent about. The hospital is all about anomalous cases and they want to put me in a PET scan as the last MRI scans have shown the atrophy in my lobes has STABILISED!

There is something going on and they want to get to the bottom of it. 

A PET scan will show more the workings of my brain rather than just its volume, but is subsequently also prone to more of an interpretation - such is the complexity.

I did my yearly neuropsychology tests and was told it was pretty much the same as last year’s - it certainly felt harder. More brain fog, less cognisance that I’d got the right answers, and subsequently less confidence. 

I felt I was giving a best guess rather than knowing I'd got the right answer.

So who knows what I've got? 

And that was it for another year.

 

New Life/Old Life

There and back again...

So here I am in Wells. I'll be here for the foreseeable few months - possibly for the rest of the year. I'm in the process of acclimatising. I haven't really spoken to the locals yet. There's a kind of passive/aggressiveness you get in some of the shops here - as though you're in their house, their rules, and you'd better watch out - that you don't get so much of in cities. 

Big fish in small ponds and all that. 

You also get boy racers whose exhaust pipes are considerably more expensive than the cars they're attached to.

I guess I'm prejudiced about my old home town. Most of us who went to the cities are. That's part of the reason we left in the first place.

Gaming

I will be going back to London frequently, in fact from Sunday 13th August I'll be overnighting it weekly for gaming purposes. I'll also be visiting friends around the South East and other far-off places too.

I've also got D&G on Mondays (D&D for dyslexics) which we play on Zoom.

However, I am going to be spending the midweek in Wells so I need to do some gaming. My sister put me onto the local community Facebook group and already we have a very enthusiastic posse of people who wish to play D&D, and a venue too.

That's a pretty good start I'd say.

Threads

Anyone joined this? It's like Facebook with strangers. It's for the most part rather anodyne in comparison to the highly toxic 'X', formerly known as Twitter. 

I searched for 'Dementia' on there to see what was going on. Some Americans calling themselves 'The Dementia Guru' and such like. I'm sure they'd give Professor Warren a run for his money. (Joke.)

I get very annoyed at people setting themselves up like this - as though they're experts without any qualifications or true expertise, and give out advice like:

"Tomorrow is another day."

"Overthinking will lead to sadness."

"Your thoughts affect your moods."

Sadly, people lap this tripe up.

I was going to give up on Threads but I saw a famous person on there who was undergoing brain-mapping as she'd suffered brain fog and tinnitus for years. 

'Hey! Join the gang.' I thought. I told her about my situation and wished her well and said I was interested to see the results. She got back to me with a lovely reply wishing me well too. 

She has a reputation as an absolutely lovely person and I saw no reason to disbelieve it. 

Needless to say certain family members are rather 'jel' at my new friendship! Lol.

I am that shallow, as it turns out.

Dogs

My sister has a lovely cocker spaniel puppy. He let me walk him up through Wells - no one other than my sister has managed to get him further than the end of the drive.

We got on really well.

One of my dog friends.

I need dogs in my life. I'm missing the 3 at home - lazy Wilbur, sweet, barky Chip and stubborn Stan. It's lovely every time you come downstairs in the morning or back from whatever and they're so pleased to see you.

They give you love and exercise. And that's great.

I also need to sort out swimming although I'm a bit hesitant as I haven't been for years. 

More to come, hopefully more regularly.

Hello Elden Ring - Goodbye January!

Elden Ring

I knew this would be a bad idea. I had time to fill and I love gaming so what would make more sense than buying a massive open world RPG for my Xbox? Nephew Ben had extolled its merits (and he is a connoisseur of these things) and even Jacqui encouraged me to get it.

It's a bizarre, nightmarish, post-apocalyptic fantasy world. A Japanese take on European medieval gothic fantasy. You have to see it to understand.

Initially your character dies every 2 minutes while searching in vain for something to do. You're given bafflingly cryptic clues and instructions which you are supposed to figure out or even manually jot down in a notepad. Unlike other video games of this type there is no quest-line facility built into the game which you can refer to. You're just supposed to know.

Thanks to YouTube there are gamers who've played it to death and can show you the short-cuts. 

It is an incredibly immersive and massive game. I have put in 120 hours so far. My character is level 164, and still he gets his arse handed to him on a plate.

Yesterday I played for 13 hours. 13 HOURS!

Beautiful but baffling.

I've had arguments with J about it already. She was working her arse off upstairs while I was sat on my arse trying to beat a boss for the 23rd time and getting so close. Doesn't she understand? I mean for the gods' sake!

So now I have chores to do in the morning which actually make me feel better about myself - keeping the house clean and tidy, food shopping etc.

Enough Elden Ring for this week. Anyway I haven't a clue what's going on in the game. 

This Melina bird shows up talks to my character now and again. She seems nice. I haven't a clue what she's on about. I just go around killing stuff. Someone's got to do it and it looks like it's me. Could be worse I guess.

Not Online Gaming!

Back to D&D or the old analogue version using books, tables, dice and real (or real-ish) humans. 

I explained to 2 people this year -  a neurology nurse and a radio producer what Dungeons and Dragons is. 

It's people sat around a table. One of them is a Dungeon Master (DM) - he or she has the rules and the adventure. The others are players who have an individual character with stats for Strength, Intelligence and so forth. They have classes such as warrior or wizard. The DM tells them where they are and what creatures are populating the place they are in. The players' characters decide what their actions will be and the DM decides what that entails. It might be that the characters are in a village and they have an audience with the local mayor. The village has been plagued by nearby orcs who are raiding the village for food and gold. The players are in conversation and they are trying to persuade the mayor they need more money than is being offered to deal with the problem. We can roll-play - the DM playing the mayor and the player playing his or her character - and then as DM I would say - roll a Persuasion check on a 20-sided dice. The player rolls a dice and if he fails or succeeds trying to roll high. If that argument the player had made was compelling I would say roll a 10 or higher. If it was less than that then it would be a failure and the dialogue would reflect that. The outcome is the outcome and the play and narrative continue.

So...I explain this to people. And they still think this is an Online game. 

People don't really listen. They're lazy and look out for key-words and when they hear one they think 'Ah - that resonates - I know all about that subject." But they get it wrong.

I guess I'm as guilty as anyone.

Narnia Review and fiction and stuff

Yes, I said I would review all the books in my last post. It's so long ago now. I liked them. The Christian thing never struck me in the earlier books, but in the last book especially it does come across - sacrifices and all that. They're really good - don't get me wrong. 

J says that children's books suit my new-found dementia as they keep me on the ball all the time. There is no guff - no padding. My attention is kept throughout. There is always something happening.

I've tried some other novels (there is much research on this subject to show novels aid the memory) but can't get into them. I'm blaming me not the novelist.

I never read anything other than comics (2000AD - not the Marvel shit) when I was a kid. I just couldn't get into them. My Mum was a primary school teacher who could get any kid into reading, but she gave up with me. I found just found every novel presented to me painfully slow and tedious. 

It wasn't until I was in my early 20s and I had a friend introduced me to the works of Martin Amis, Henry Miller, Philip Roth and ultimately Charles Bukowski, the latter who is my favourite writer. He can say in monosyllables in one paragraph what it would it would take me in 3 pages to say, and mine still wouldn't be right.

Radio 4 Interview

J and I were interviewed for a forthcoming 15 minute programme on Radio 4  - the 1.45pm slot after the news.

It was an interesting process. I expected someone to have a recording rig, but instead the producer held a device roughly the size of a box an iPhone would come in, with a muffler on the end. That was it. I guess all the software cancels out background noise.

It was an interesting experience. I shall reveal all after it is broadcast, which I understand will be in April 2023.

Beer

When you give up alcohol you think, oh god - how am I going to do this? Am I going to get withdrawal symptoms? Will I need to take up Xanax or barbiturates or get a dealer to give me crack to mitigate for the huge gap in my life? 

How will I go on? HOW WILL I COPE??

The truth was actually less dramatic. I love the TASTE of beer, and it wasn't the alcohol. Many of the brewers have really got the process sussed now and that horrible stale, yeasty aftertaste of such filth as Kaliber is quite rare now.

My favourites are Brooklyn Special Lager and Leffe Blonde 0.0%. Try them - they're great.

It's very nice to discover I'm not an alcoholic. It's also nice to see I'm slim again.

It's all in the mind...

 How are you?

Have you ever regretted asking that question? Sometimes if you're having a bad time of it and you really know the person who's asking, you can open up. 

But otherwise, please spare the details. 

I once asked an ex-work colleague how things were, and he proceeded to tell me every project that he had managed to get for the company. Oh my god - it went on and on and on. After half an hour he said "...and that one's worth nearly a thousand pounds." 

At that point I just said goodbye and walked off. I didn't care how rude it appeared.

That one's worth nearly a thousand pounds! I think he'd got his decimal points in the wrong place!

We're British, and asking how are you is just a polite soundbite. It's showing an interest in the other person without wishing to be intrusive. It's not really asking for much of an answer either - it's more of an implied wish that the other person is in good health in body and mind. 

You never want to burden people by actually answering truthfully, or boring people senseless with the minutiae of your working life. 

You just say, 'not too bad', 'mustn't grumble', 'fine thank you' - that kind of thing. 

Saying you feel amazing - fantastic, is borderline vulgar. It's boastful. After all, no one likes a show-off.

I think this should at least be on the National Curriculum. It would help enormously for those of us who don't wish to be stuck in embarrassing and tedious conversations.

Concentrate

Why did the model stare at the orange juice?

I'm in a pretty good place at the moment. The Sertraline is STILL working - or at least mitigating the worst of my anger, and I feel calm and content most of the time. I can concentrate on reading and writing; I even did something useful yesterday and tidied and cleaned for an entire morning (long overdue it must be said) while I had the house to myself.

On reflection, I've stalled writing as I don't think I have any thing that new or interesting to tell you. I've been getting fitter by running in intervals with the dogs as I've joined in with their squirrel chasing. We've yet to catch any as the squirrels are unfairly advantaged by having eyes on the sides of their heads giving them almost 360' vision, and are also able to run up tree trunks.

But at least I am getting fitter. 

One thing I have noticed with my vision is my eyes seem to work in slow motion. As I'm running I have to look at the uneven terrain and I have to concentrate on it. It's like the centre of my vision is more in focus than the outer, and the information is taking fractionally longer to get to my consciousness. So I'm really having to concentrate a little bit more to avoid hazards, in other words.

Maybe I should run on football pitches and the like. It's only a matter of time before I have an accident.

Spinal Tap

Had a lumbar puncture the other day. Odd procedure. I've got to say the staff at The National Hospital for Neurology and Neuroscience  are incredible. I felt so put at ease - everyone there was charming. I would hazard a guess it's a great place to work.

So you sit on the edge of a bed and crouch over. They give you an anaesthetic and then the procedure. They asked if I wanted to contribute some more for research purposes. Yeah, knock yourselves out: take another pint! 

So I was there as the spinal fluid was extracted. It took a few minutes - how many I couldn't say. 

Repercussions - the next day I had pain around my coccyx area, and a slight headache. These pains I was told to expect, and they lasted about 3 days. Small potatoes really.

So now I have to wait till the new year to get the results.

Xmas

Jacqui's last day at work for 2022 is on Monday 12th. That means that the mad dash to get Xmas ready will  be a gentle canter instead. I can't do the shopping - I've always hated it but in recent years I've found the crowds and general hubbub really disorientating and unpleasant. Thankfully one of the good things about shopping is miserable buggers like me can do it all online now.

I've always loved Christmas so I'm looking forward to seeing friends and family. I'm looking forward to playing games and good cheer. I realise some people hate Christmas and I understand why, but as an opportunity to be amongst people and have fun and good times it tops any other event in the calendar IMO.

Creativity

I've been writing character personal quests in Drakkenheim. These are secrets the players' characters have that they don't tell the others. There's a list of them from 'I need to reclaim a family heirloom' to 'I am the rightful heir to the kingdom!' to 'I must kill the leader of this faction.' 

Threading these plot points into an already complex story is great fun. It gives me enormous excitement to secrete these things throughout the adventure knowing that the characters will discover the lost items or make a certain event come to pass.

The great thing about Dungeons and Dragons is the Dungeon Master AND the players make the story. It can potentially go anywhere. 

It's the highlight of my week. And oddly I'm becoming less and less tired after a long session.Maybe because I'm fitter?

SHUT UP GERAINT

Nothing to say

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

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

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

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

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

God it's easy to ignore those. 

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

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

D&G Decline?

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

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

Maybe it's just my perception.

Perceptions are everything though. 

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

They are here...

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

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

Increasingly separated from everything until there is nothing.

Oh well, look on the bright side.

😶‍🌫️

Finally Retiring

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

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

I'm not really on smack by the way.

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

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

Well, I intend to of course...

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

Culture of Guff

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

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

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

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

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

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

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

What an idiot I was!

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

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

I had mistakenly thought this was the whole point.

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

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

He realised then the world had gone mad.

Hello world.

The Burden of Dementia

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

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

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

As is lack of empathy.

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

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

I should start going swimming again.

See? No worries at all.

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

But that mindset is difficult to sustain.

Dementia is a burden to everyone nearest you.

The last Bay

Back to tangibles...

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

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

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

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

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

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

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

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

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

Death to invasive flora!!!

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

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

Am I still demented?

I don't feel demented...

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

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

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

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

Sorry if I did.

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

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

I'm skill, me.

What's next?

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

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

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

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

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

Support Group Angst

Had our monthly Rare Dementia Suppoort meeting yesterday.

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

Yesterday's session was difficult. 

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

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

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

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

I probably failed on that last point, right?

Rude Words

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

The word empirical is HERESY to scientists. 

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

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

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

Till next time, cheers me sons. 

Gussets from hell!

Atrophy be Damned!!

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

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

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

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

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

The Exclamation Mark in Art.

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

It's the weather forecast, stoopid!

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

Today they cancelled it.

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

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

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

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

Plus I love to let the darkness enshroud me.

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 💩.

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.