I've suffered for my art - now it's your turn

The trouble with sofa-surfing

They say once your back goes it's never the same afterwards. Evolution has not completed its task in other words.

A few years ago I was working at a squillion-pound mansion in Wimbledonia and the muscles in my back became inflamed and I had to take a couple of weeks off work.

Staying at a friend's on his sofa on Sunday night then coming back and sleeping on a soft bed, the mattress of which is probably in need of replacement, and I had to roll out of the bed onto the floor this morning. I can feel knotted muscle under my shoulder-blades and need to stretch out and do some yoga poses. 

I'm feeling a bit dim today tbh. Even by my standards. Typing is rubbish. I guess I've had a tiring couple of days with travel, gaming and poor sleep. 

Oh poor me! Lol

But it's just that you get doubly tired with dementia. And you don't realise.

I was in my FTD group this morning and after an hour I rudely said I was bored. I didn't actually mean bored - but I was tired and couldn't concentrate. Listless would probably have been a better description, and less offensive to Gill who was telling us something important to her.

FTD strikes again.

My Dad's better than your Dad

Dad picked me up at the station on Monday. It's lovely. He's such a kind fellow.

We walked to the car and I was surprised as he had a courtesy car so we got into a sleek black Mercedes instead of the older silver model I was expecting.

We drove over to the Mercedes garage where his car was ready after being serviced. We walked in there, my 82 year old dad with brown socks, shoes, khaki shorts and a shirt tucked in, and me in shorts, shades, black trainers and a Buff on me 'ead.

I announced to the woman serving us - "We are the best dressed men in Somerset." 

I'm great, me.

A customer in her (this is relevant) 50s had been waiting longer than us and was rather unhappy. She interrupted the woman serving us to tell her how long she's been waiting. 

Dad said "She was a teenager when she arrived." 

So bloody rude but bloody funny. I guess that's where I get my faux pas from.

Air conditioning rocks by the way. (All transport over the past 36 hours.)

Living in Somerset is a good prescription

I'm living in Wells. It's pretty chilled. Some people have come back to live here and I need to make a diary appointment to have a coffee with them. 

I have a lovely D&D group of strangers who seem to have all gelled immediately. I should probably do the same with them.

But rather like dating - when is the right time to contact them? Should you wait for them to make the first play? Ostensibly, you want to position yourself somewhere between being a stalker and Jonny-no-mates. Not too creepy and not too aloof.

I guess just reach out as maybe everyone thinks like this?

Nevertheless, I am really relaxed.

I no longer enjoy shopping so I have things delivered. Like my Buffs from Germany, or flip-flops from The Netherlands. Hurrah for the 21st Century.

I like a Buff, me.

But it's too bloody hot. Feel sorry for the kids going back to school on the hottest week since June. Buffs and flip-flops are the way to go. And shorts. I can't wear anything else in this damned heat. And a t-shirt of course.

OF course.

Here I am modelling a Buff. And a t-shirt. And glasses.

You wanna get wiv this? You wanna get wiv this??

Sorry - I'm boring myself now.

Mark Hardyman is down today which is great, and we shall see Nerys and Tomos this evening.

I love you and goodbye.

Footnote:

The title of this post is a quote from the one and only Neil Innes.

New World Order Update

Return to Castle Cary please.

Back in Wells after the week away in London and its environs. It was nice being so chilled.

By contrast the train journey was horrible. I had my headphones on but there were people, kids, young people everywhere.

Ghastly.

It was loud and overcrowded and the train was running late. I had a bloke's arse in my face as he fumbled about with his luggage, phone charger and his dog for what seemed like ages.

Having had a good week where I felt almost normal again, this put the cat amongst the pigeons. I took gulps of air and fidgeted, rocking back and forth like Arthur Fowler.

It was great to finally get out of the train with Dad waiting for me on the platform.

Pandas

Looks like I'll be here in Somerset for the next few months, all the while travelling back to London on the weekends to take part in Larry's Dungeons and Dragons campaign. We had a 6 hour session last Sunday - it was great. We are kicking ass, as our gods intended. All the while the atmosphere ramps up as the intrigue increases. 

Can't wait for Sunday.

I also can't wait for Thursdays (which are the new Tuesdays...) where my Wells D&D team will undertake their second instalment of The Sunless Citadel. What a nice bunch of people they are too. Great to get a friendly team together so quickly. It's not always easy getting such a group together...

The online 'community'

...and we have 2 parts women to 4 parts men. Which is great. Mixed is always best.

Dogs

Everywhere I go there are dogs. Bisto the brown lab, Tomos the cocker spaniel, Sealyham Stan, 'My Main Man' Chippy the dachshund,  and Greedy Wilbur the walking gob and stomach.

I love dogs. In fact I love animals. Which is why I feel such a hypocrite when it comes to food. We must be the only animals who feel guilt about our natural omnivorousness. 

Apart from Pandas maybe. They're apparently omnivorous but have chosen to eat only bamboo, which they have to eat non-stop to get their required nutrition.

Maybe they're just dumb. Which would account for why they're dying out.

Anyway, having a dog means you always meet people, especially when he's a friendly, cute 5 month old spaniel. So I'm making lots of new acquaintances in Wells through Tomos. 

Which is nice as most of the old acquaintances aren't up to much. Luckily I've grown a sporran on my face to disguise me.

Tomos et moi

Do I still have dementia?

I feel really good. I'm doing a word puzzle on my phone which is crazy-addictive, and I'm pretty fast at it too. I'm reading the news, reading D&D books, listening to podcasts, music - fusion and prog (which aren't easy listens), my typing is getting better, my speech is more fluent with strangers, although I guess only because the subject matter is restricted to dogs or the weather. 

Could I be recovering from FTD? Did I have another ailment over the top of it that I have recovered from?

To put things in perspective, it would be interesting to see what my behaviour is like without 100mgs of Sertraline every day. Also I still stare out of the window when the subject matter isn't something I'm interested in. And the subject matter I am interested in is world politics, D&D and other TTRPGs (tabletop role-playing games), rugby, US politics, animals, er...I'm struggling now. 

Music, as long as it's difficult as all hell and had its heyday in the early 70s.

I guess I'm really chilled at the moment. The train ride was nearly problematic for me, but I've learned to deal with stressful situations by taking deep breaths, closing my eyes and telling myself it won't last forever.

The long and the short of it is my initial pessimism was misplaced: I think I'm going to be around a lot longer than I thought.

Well, I may get hit by a bus tomorrow but you get the idea.

Disclaimer

There's stuff I can't tell you on here which is a major factor on my current situation, but this is out of my control. Sorry to be cryptic; I'm as honest as I can be but I have to be economical with the truth for the sake of others.

Am I a fraud?

No news isn't necessarily good news...

I was going to write about Bruce Willis's recent diagnosis of FTD, but I won't because we had a meeting with the Neurology team as a follow-up to my lumbar puncture in late November and I know more about us than him.

The neurology team had sent a letter we hadn't received as a follow up from the lumbar puncture. They told us in its absence, that the tests had shown up no signifiers. This is more than likely, good news.

They did a quick neuropsychology test which as usual I performed with flying colours.

They said the MRI from 2 years ago and the most recent one showed no obvious increased atrophy in the frontal or temporal lobes, but did in the Hippocampus. They are going to use an AI program to 3d model one image over the other to get a more accurate picture of my brain.

They said they didn't know for sure what my dementia was - Behavioural or Semantic variant or other, and that in time it will show itself, but for now my dementia symptoms (searched long and hard for that word!) are atypical with any one dementia and are mild.

I'm due an MRI scan in July again.

As for the replaying of events over and over in my head and me shouting out for them to fuck off, that could well be a psychiatric problem.

When we got home I checked my email and paperwork. 

Despite my illness I'm still very organised compared with most people.

I put all my medical correspondence in the green box file. The letter isn't there, nor do I ever recall seeing it. They said they'd emailed it too. Nope. Been waiting months for it too. I would have known if it had arrived.

Who cares for the carers?

J has taken yesterday really badly with another sleepless night. 

No definites - no tangibles - from the best neurology department in the country.

She no longer has a husband. Just this child. What is the future? How can she plan? This isn't what she signed up for. And am I making it up? 

She's not so sure it seems. 

Geraint earlier today

That old adage of walking a mile in someone else's shoes. Very difficult to do of course. The nearest thing I can do to communicate where I am is write this blog.

What with work, family and the house, and the lack of sleep that induces, J doesn't have time to write a blog.

This aspect of the disease and how it affects others is horrible.

I don't want to put words in J's mouth, but it's clear to see how awful this is for her.

So do I have dementia?

Well, I'm finding reading more difficult. It's more of a mechanical process and I don't always ingest the message of the writing. I will sometimes start at the last paragraph then impatiently dart to a previous paragraph, then to others, not completing the article, and then move to a different article entirely which will hopefully garner my undivided attention.

I can't cope with work. Haven't really been able to for years. Fyfe was doing everything by the end.

I leave lights and the oven hob on. I discover unfinished tasks, and search for things I never used to lose.

I need to make notes about a D&D session so I know it really well. I open my notepad and the notes are already there. A vague recollection of doing it; the names and contents are familiar, but I don't know it well enough to run it, but I end up doing it anyway because I can't knuckle down to study for the reasons above. 

More mistakes but the players don't know and are  - hopefully - still enjoying it.

I'm just being rude when I think I'm being funny. I can't do light and noise like I used to. I just want to get out of party-situations, which I used to love.

I don't want to go out or do anything, apart from games and TV. I obsess about something for a while then another thing after that. 

I'm more absent-minded and my short-term memory is going. I lose words, take ages to find them straining my brain, then forget them again in seconds.

I flap at anything unfamiliar. I can't deal with stress at all. I feel the physical effects - brain-stalls, headache and blood-pressure sky-rocketing almost instantly. I can't take this in. Got to get out. So I walk away.

Is it part-Alzheimers, part FTD, part Semantic Variant? I think a bit of all of them. 

But even putting one name to it - does that even really help? As we know dementia can have a name but it brings out very different behaviours in the sufferer. 

Floating in the void.