Remembering Simon Mayo

Simon Who?

 Lying in bed at whatever o'clock. Thinking about a film review and it took me ages to think of their names. 2 familiar people but no names. Mark. French surname. Not Lamar. The other guy. Philip? Odd surname again. Mark Kermode! 

Then I forgot the name again.

I went back to sleep. I woke up and the name - Mark Kermode. That's a good start. And Simon. Simon what though? Amstell? No.

Mark Kermode

I got downstairs and remembered Mark Kermode and Simon Mayo. But that's a new one. I'm forgetting names a lot more now. I need to keep practicing.

Bruce Willis

So Bruce Willis who we knew already had a form of dementia. His family have recently released the news that it's FTD. (J as usual guessed it was months ago.)

I hope they use his fame to promote knowledge of the disease, rather than lie back and do nothing.

It's quite nice knowing I'm a trend-setter.

Walking the Dogs

J and I walk the dogs every day. J uses it as a form of catharsis where she works through her work out loud. I don't say much at all. Just listen and occasionally drift off into my own thoughts. 

Most of it is jargon-rich corporate stuff and people who I've never met and never will. I don't understand most or any of it. But it helps her and I don't have much to say when we walk - just take in the natural world and the joy of the dogs.

Now and again she expresses the burden she feels, being the primary earner, the runner of the house, mother to me as well as the children, the dogs, her parents, her family.

It sometimes takes a while for me to express how I feel - to first work out the elemental message from all my thoughts and verbalise them in a way that's factual and free from emotion.

So I go quiet and she knows I'm upset.

I'm sorry she's burdened with my illness. It's not what I wanted either, and don't think I don't feel both guilty about it and grateful to you at the same time. But what am I supposed to do with this information? What do you want me to do?

Fair point.

I'm glad I expressed myself like that. It's increasingly difficult to express myself constructively as the alternative would be an irrational, emotional outburst.

I ask myself what do I want to say, what is underlying all these emotions?

It doesn't get any easier.

Elden Ring and gaming update

Love/hate relationship with Elden Ring. After 174 hours of game play. - 174! -  I'm on the last 2 bosses. I'm not expecting a good outcome. Some of them take 30-50 goes to get past. I ended up asking myself if I was enjoying or hating the game.

I left it for a couple of days and told J I had had enough. 

She looked relieved the man-child was off the console.

I was back on a day later. It is daft though. I'll be glad to complete it. However it's such a massive game world you could play another 100 hours to complete it all.

I've 2 D&D campaigns which are both in their latter halves - the Monday crew at its final chapter. 

I'm finding it more and more difficult knuckling down and properly prepping the games. I think having the temptation of The Elden Ring in the other room doesn't help.

But when reading and taking notes my eyes dart around the page and then I've lost my thread. Staying on a page is tough. Making notes is good but not if you find yourself on autopilot. You end up with notes that mean nothing.

I really have to knuckle down today and get my head round it all. Try and visualise the party in a situation, the motives of the NPCs (non-player characters who I run) and then play out possible outcomes. Of course, the players rarely do what you expect them to do but having various options gives me food for thought - it fleshes out the characters - so when the players throw me a curveball I'm more in the head of the character and can react accordingly.

Sunday afternoon - here I come!

Cheery Thoughts at Christmas

You have no idea how alone you feel 

Withdrawn into a world ever distant from those closest around you. Told how out of order you are, that your behaviour is scaring certain people, that people are treading on eggshells around you. It feels everything I do or say at times is wrong or offensive to someone. You end up just wanting to go into a room where you can lock the door behind you and indulge your own quirks and interests. It's better for everyone.

Me and you are understanding each other less and less.

It's increasingly impossible for me to understand what is upsetting people. I know I lost my temper weeks ago but I'm still paying for it. I scared people. So I took pills to mitigate my anger. I still lost my temper - we all lose our tempers now and again (well, most of us do) but in a less explosive way. 

So I'm here listening to Louis Cole's latest album which is delightful, and typing this as a form of catharsis. And a smile is back on my face. 

Last time I did this I mentioned names but I've learned that lesson. There's some very sensitive souls out there.

Mortality

My parents are elderly now. You know that thing where you visit them periodically and they are incrementally older each time? You notice it if you live apart.

Mum had a stroke last summer and I was there to witness it. It was like she'd saved it for all of us to be present and then let go for it to happen.

It wasn't like that of course, it was just a coincidence. But it felt like that to me.

I think she's had mini strokes since then. She doesn't want to leave the house now. In a way her and I have synchronised. She has issues with her semantic memory, gets muddled up from time to time. 

Dad is doing everything around the house but he is getting more frail. Demented son is going to go back in the New Year to do some odd jobs for them around the house. God help 'em...

Mortality becomes really apparent when you witness chronic conditions in yourself and your loved ones.

I'm gonna be a star!

On the upside, I've been contacted by those awfully nice people at RDS to be interviewed for Radio 4's Women's Hour. I sent an email to the neurologist who'd be interviewing me and if my pathetic attempts at humour haven't put her off I may be chosen for the final cut.

I'm also part of a group of partners/carers and people with dementia who will be doing talks to get the word out about the seven rare dementias (there are around 200 different types of dementia) that RDS represents.

It feels good to be able to speak about my condition without hopefully bleating on about how terrible it all is.

I shall make some huge faux pas no doubt - all part and parcel of being demented!

Dungeons and Dragons update - no wait!

D&D is ongoing with the 2 campaigns. I would play every day of the week if I could.

But I need something else and I've just bought the 7 books of Narnia. When I was around 8 I read The Lion The Witch and The Wardrobe. It was the best thing I ever read. I loved it so much - (SPOILER ALERT) that there was another world accessible through an old wardrobe.

But the teacher, Mrs Allery, never told me that there were other books in the series so I read it again and it was only years later that I learned it was a series of 7.

I'm really looking forward to reading them through Christmas and the New Year.

That and the speech-making/giving for RDS are really positive intro to 2023.

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.