Friday, July 22, 2022

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. 

1 comment:

  1. 'One person has actually gotten better.' Interested to hear what has helped them.