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.