USE YOUR WORDS JOHN

Post 13 - March 18th 2023

Adelaide Cup long weekend at Morphettville

The March long weekend here in Adelaide gave me the opportunity to have 2 really great days of racing at Morphettville.

Our TRL ownership group had a winner on Saturday with Bellinger and on Monday through the same group I had my first ever Adelaide Cup runner in Team Captain. He did not win but ran a bottler beaten just 3 lengths. So proud of this horse.

It was the stuff of dreams to be trackside rubbing shoulders with racing royalty and I savored every moment. Definitely enjoyment plus and I am so blessed having this opportunity.

But wow, the long days at the track came with challenges that really took me by surprise as I head down this Lewy Body Dementia pathway.

Now, as I often say on these posts I am doing ok still despite the changing landscape in my mind.

So, what was it about the days at Morphettville on Saturday and Monday that surprised me?

Well, I have since had 2 days to rest and to reflect on how it all played out. And I am rather sad and feeling very overwhelmed on how affected I was with what happened in my mind.

It was a hectic time trackside. Lots of people, so many different conversations, so much social inter-reaction, hey, all good but it came at a price.

For me, I have a number of blank moments. I don't know how else to describe it, blocks of time seem to be missing. It is like I was operating on Auto Pilot for periods of the day, and I have no memory at all of what really happened.

This LBD cognitive impairment is racing off along a new track.

Ruth will tell me that she can see some significant changes in me centered around my ability to be in control for myself. She will say I am becoming more of a follower when once I was the leader. But while that is most likely true it does not explain, for me, why I am just not connecting as I once did.

What I see on that point is that it is likely I am losing my ability to multi-task in busy social settings as my mind changes. I seem to be battling with my peripheral thinking and peripheral vision meaning I am somewhat limited in being able to engage in different functions at the same time.

And while in essence that is mostly fine, it is not who I am, well not who I have been.

In times past I had an amazing ability to excel in these areas. I have an intelligence that is way off the radar, I was given a mind and thought processes that not many others have. Now, that comment is not ego driven or derogatory to anyone else, it is not saying I am better than anyone else, but it is acknowledging that in these areas I had a sort of 'superpower'. I was a standout. I never had to second guess myself.

On a busy race day for example at any given time I have always been able to have a conversation, listen in to another conversation, tune in to a race broadcast on the big screen or listen to the commentary going on in the background, observe what is happening around me, think about what I'm doing next, think about what I'm doing later and still have spare thinking space in my mind.

Now I am finding that impossible to do. It is just not happening as it always did.

And that bothers me, bothers me deeply. Honestly, it is depressing bad.

Then as an added issue, I do seem to be in a state of worry when I have a conversation because I am getting worried that I will not remember what it is that I am saying. Over the past couple of weeks, I have been having an issue with 'using my words' to express my thoughts in a conversation. Not all the time, but at times.

I am thinking that this is playing on my mind big time. Because when I get stuck and cannot express my thoughts verbally it is become awfully frustrating.

And what I also believe is that in my mind I am worrying about what happens if I get lost in my words, that is I'm guessing, somewhat understandable.

But what it probably does is that it takes away part of my ability to actually have a conversation because so much of my mind is focusing on what to say next. I don't want to get it wrong.

Sort of robbing myself, when I should be focusing on what could happen, I am stressing over what might happen. That of course is really not helping.

This leads to having post-race day conversations with Ruth to try and get some insight into how I present in the social setting. She will say others probably have no idea that anything is wrong with me. And that is really cool with me.

I try hard to not let anyone get to see the changes that for me, are clearly unfolding in my mind. I am able to bluff my way through and brush over the errors.

But that does come at an enormous personal cost. It takes a lot of strength, concentration, bravado, bluff and luck to get through some social settings. Not all social times but those like the race days at Morphettville.

And I guess it also depends on who I am talking with. If it is someone newish then I guess we have less historically in common to chat about, conversations are more off the cuff as you feel each other out. If the chat is with someone that I have been involved with over time, then I guess we chat about common ground that has been a part of the basis for our friendship. And my long-term memory with this person and our on-going connection is still in my mind.

The latter type conversations are easier because I can just waffle as you try to think and get things back on track if I am struggling to find my words.

One thing that does help in this area is that my humor has thankfully not left me, in these conversations I can still add some fun, people do laugh with me and that is very satisfying in LBD times. And as said before, laughing deflects from my conversation bloopers.

Lots there I know, but trying to summarise what is going down creates a contradiction.

I feel like I have no understanding around the change happening, in that I cannot pinpoint what it is that is actually changing and why. Sure, as explained I know change is there but grasping the reasons behind it are not clear.

Yet, at the same time, I am able to have some rational thinking moments and see exactly what is happening with change and why it is happening.

Guess the change is confronting and that undoubtably causes the frustration.

Time to finish up now for this post, thanks as always for checking in. And for the record, way over 4000 hits now for the JonnyG Remembers blog.

Go Cats … we keep the faith ... 

And finally, I will try to show some sort of understanding of how complex life can be ...

See, apparently, I'm the one who is losing it, but get this ... the other day Ruth asked me to put tomato sauce on her shopping list. So, I did, but not sure why she asked that because now she can't read it …