IT WAS A TEST OF WILLS

Post 38 - January 29th 2024

Sometimes you just have to use it or lose it, apparently. But as this Lewy Body Dementia journey drags on I reckon the effort required to 'use it' just gets a bit much. Sure, stay positive and active as best you can but throw in the old age card and life does get very testing.

The answer is clearly not to just sit and let life get taken from you. It is naturally important to be active and social but gee, that comes with some real down sides when the cognitive issues kick in. Without sounding like a kill joy sometimes it is extremely difficult to be active and/or social.

My personal LBD journey rolls along, and as I wrote in other posts I am doing ok, I can for the most part get myself into a good spot. But that is getting more tough as time ticks by. I find I am really needing to call on every last ounce of energy I have simply to achieve the most basic of chores at times. Hey, at other times I am doing much better but when I struggle, gee, it is a massive struggle.

And what people see from me is not what is necessarily happening from within. I can present ok and hold my own in conversation and most settings. That is a real positive, but for me privately sometimes it is a real jumble. I use so much energy to engage with others socially and that can get really tiring. And I mean really tiring.

But, for all of that, the journey continues, the adventure rolls on.

My surgery back in November has also hit me hard, recovery has been very slow and painful. Complications have meant I am continually on the back foot; it can be one thing after the other with pain and discomfort. During recovery I have had no energy, pain as said is constant and fatigue is ever present. It has been rather difficult to navigate. Today is day 63.

And with the surgery issues around pain then that impacts my ability to combat the cognitive problems. Mentally, this pain is a real downer, it becomes chronic and overbearing.

I really need to be able to focus on the moment, to be in the groove and stay in my lane with thoughts and conversation. Cognitively that is a test at most times and now with the pain and discomfort thrown in it means being able to focus is often tested.

My ability to remember, to recall what I am actually talking about is a challenge. If I am responding to something somebody has asked me it is a little clearer but when I have to instigate the conversation then I am struggling, at times, to get a handle on what I am saying. And that is super frustrating.

Sure, I do learn to cope, I do learn strategies to bluff my way through some conversations but that is testing. It is no fun and at times becomes depressing.

And I simply cannot multi-task in thought like I have been able to do throughout my life. I am sure some of that is an older-age thing, but I do know it goes beyond that thought. I just cannot listen to more than one conversation and that too is very frustrating.

It means life can become rather dull when you get into a position where you purposely shy away from being around people. That does not help with feeling depressed, but it can be an easy way out. Stay home, do nothing, talk to nobody. Safe but boring and probably not a good move.

So, last weekend Ruth and I decided to bite the bullet and head off on a three-day road trip to Melbourne. We planned the time well and put in place some safeguards to minimise any potential travel issues. If things did go pear shaped with my health and we needed a plan B then we had that covered.

Because being in a social setting that is a little chaotic really does test the cognitive powers, it can really be a test of wills. Trying to stay connected in conversation is hard, sometimes it is impossible. But with plenty of planning, calling on some really engrained strategies to fall back on then it was manageable. So, tough at times, not so bad at others.

Anyhow, our trip included a two-night stay in Ballarat at a motel, that meant we had a home base, somewhere to rest and relax, eat, shower and just chill if needed. It really did work well. It was a good move.

On Saturday, as part of our time away, we took the 100km trip down the freeway to Moonee Valley for a day at the races, our horse Bellinger was in the last race, and this was a great opportunity to be trackside to watch him go around. 

Meeting with so many from our ownership group was daunting, generally fun and so good, but at times it was just darn difficult. 

Ruth and I had not been on a road trip to Melbourne for a day at the races since Melbourne Cup Day at Flemington in early November last year, so we had lots of catching up to do with the great folk from our group. And being with our ownership group is fun but, as said, testing at the same time.

I do think I handled the day ok, well I know I was happy with how I enjoyed the time. Interreacting with others all went fine, I do know personally I had some blank cognitive moments, but I reckon I was able to bluff my way through. As I reflect on the day, I am so glad we took the trip, memories were made and after 61 days of recovery from surgery it was just so pleasant to be in a social environment.

Having to deal with my personal issues was another challenge, my pee-bag was awkward, wearing good trousers with a belt and having a shirt tucked in was the challenge. Trips to the loo to empty my bag were different, it required a different approach. I can no longer use the urinal, instead I have to be in a cubicle, and it was awkward having to semi undress each time. Guess it will be ok and will just take some time to get used to doing things differently.

But mentally allowing for my LBD my belief is I coped with the pee-bag fairly well, I was personally very conscious of having it but because Ruth and I had talked things through on how to cope then it was certainly better than I had thought it might be. So, while the bag makes it awkward, it is something that will not change as time goes on so it requires a shift of mindset to make it all work when in a social setting, and that needs to be done without a lot of fuss. It is what it is, it is the future.

And in conversation I do think I stood-up ok and was able to be social and connected with others. For me personally, I do know it was very testing, it was hard work, it was full-on and tiring staying in the game and keeping that connection with others. 

So, the road trip and time away was very positive. We are both pleased we took the punt and headed over the border, the time away was important.

For Ruth, the trip was also testing and tiring, she has to do all of the driving and while she enjoys being behind the wheel, it is a lot of miles to cover and the city-driving heading to and from Mooney Valley did test her resolve. She does have me there in the passenger seat as her 2IC giving directions and I am pleased to say I only had us lost on one occasion heading down to the races. And yeah, for the return trip I got the sack and Siri Google got the gig to give directions.

But over the three days of travel, we had fun on the road, we had lots of music, lots of games and chat, we do the road trip thing very well.

Now that is where I will leave things for this post. I have added some pics from the weekend road trip, just scroll down to the bottom of this post. Again, thanks for reading, I do appreciate everyone who follows this LBD journey with me. Just on 21,500 views as I post today.

And as I finish this post, here is a JonnyG laugh to show I still have a sense of humour ...

I think I'd rather have Parkinsons, at least that way I'd only lose half my beer instead of forgetting when I left it ...

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Mooney Valley races last Saturday, Ruth and I both loved being back at the track, it had been a while, we had a great day out ... our Vic Husslers' ownership group was out in force, and we all enjoyed the big day with Bellinger, having the time in the Owners Lounge was just the best, what a venue ...

Ah, the obligatory selfies were all the rage at Moonee Valley on Saturday, never let an opportunity pass you by is my motto ... with our trainer Will Hayes, good young lad, very easy to chat with ... Luke Currie who rode Bellinger, we had a brief but good chat after the race ... with Philip from Lindsay Park at Euroa, he rides Bellinger in trackwork, Philip is a long time Hayes stable worker including time is South Australia, and it was really interesting to hear his stories from across the years ... and Travis Doudle the Adelaide trainer who had a runner at the meeting ...

Bellinger was the race day focus at Moonee valley on Saturday ... Will Hayes and Luke Currie address our Vic Husslers' ownership group in the mounting yard before the last race ... Ruth was able to get into the jockeys' room with a camera, mmmmmm, and took this pic with Luke and others watching the race replay for Bellinger ... Maree from the Hayes stable was our strapper for Bellinger and here she leads him in the parade ring before the race ... Luke Currie brings Bellinger through the tunnel at the Valley as the field makes its way out onto the track ...

Some fun shots from the Valley race day last Saturday ... Ablett Bear was there, of course, he met with Karen and it was smiles all round ... our ownership group table in the Owners' Lounge at the Valley, how darn good is this place, and the food, wow, just the best ... Ruth with her friend Lisa at the Valley sharing a drink ... and, now how about this, a whole warmer full of jockey pies, mmmmmmmmm, Ruth, did you have any to eat? did you get to have a doggie bag with jockey pies? did you manage to take, er I mean borrow anything else? ...