LIFE IS GETTING DARK

Post 53 - Friday April 11th, 2025

Adjusting my mind and thinking to the cognitive changes taking place is become a real work of art. What was normal thinking for so long across my life is now not normal; things are sadly very different. Lewy Body Dementia is a slow but damaging form of dementia and living with the symptoms can and does make life rather difficult. Living with the cognitive change is very challenging and very awkward.

Ruth regularly reads up on symptoms of LBD and she keeps me in the loop when I describe something that is bothering me with cognitive mishaps especially when it is a new issue. And it does help to have a medical understanding, it seems my LBD does follow the Dementia narrative and what is happening for me is a normal progression of this bloody illness. Does knowing that make it easier? No, it does not but at least it sort of gives me something to hang my hat on in the troubled times, the LBD is just doing what LBD does.

There have been many changes cognitively over the past couple of years, life has definitely challenged me. But, given time, I have adapted to the LBD issues that change things up and I reckon I cope well. Some changes have been subtle while others have been pronounced and awkward. I have written about the changes in previous posts here on the JonnyG Remembers blog. Some of the changes have been permanent while others come and go. 

My latest problem is with my right hand. It simply will not do what my brain is telling it to do, that is confronting and concerning. My right hand tends to move to the right when I am actually trying to move it to the left and/or up and down. It just sort of started one day, the first couple of times I didn't think a great deal of it, but I soon came to the realisation that I had no control over this area of movement. Wow, awkward at best, there is no bright side in this because mistakes made with this involuntary movement can be damaging and dangerous.

It has become a major problem to me. I am very much right-handed but for now, I am having to do many chores, simple everyday type chores with my left hand. And it really upsets me, losing control of what should be a simple movement is devastating psychologically and seeing it unfold right in front of me is mentally destroying. Sure, it is just one physical handicap, but I am not coping with this problem, and it really messes with my head.

Really awkward, but physical issues aside, emotionally life is becoming more isolated, I am finding it easier to just go dark and not communicate or participate in life. Naturally there are times when I simply have to be present and take up a role in society that, well, society expects. To keep some sort of personal connection with people and life is unavoidable at times, events happen and to have a face in life is really a must. 

But it gets harder and harder, so if I could, I would totally fade into the background and exist rather than live. I am tired of living. Enjoyment for life has deserted me at this minute, I do not like life and I do not like being a part of it. To try and be any form of my previous self requires so much energy and concentration that it just becomes untenable. To present in any form of normality and to let people into my crap cognitive world is exhausting. That is on me, I get that, of course nobody is doing anything wrong, they are simply engaging with me, but the behind-the-scenes personal emotional struggle squashes me.

Right or wrong nobody sees the struggles and the constant daily pain. And nobody can possibly imagine the confusion in my mind. I am, sadly, not the same person I've always known, and to be honest, I hate that. My cognitive confused thinking is very, very difficult to roll with, at its worst my troubled thinking is crushing, I get so lost in my own head.

So yep, life is tough, that is a given and as said I am ready to call it quits. But, and it's a big but, that is not a cry for help as such, I am doing ok, well, sort of, I am doing as ok as I possibly can. I am depressed, still/again and that is debilitating.

However, moving all of that aside I am ready for what lies ahead, but for me right now, I am just tired.

And as an added downer I still suffer the effects of my cancer issues. Today is 500 days since my surgery at Flinders Medical Centre and having to live with the pain and discomfort from that day has been really testing. Everyday pain, this bloody pee bag I'm stuck with that makes life tough and the ongoing mental trauma this issue of cancer has on my mind is the pits.

Losing my blader was crap, having my prostate and urethra taken was life altering in such a massive way. I did not expect things to be this difficult, and the lymph node fluid issue is ongoing, everyday discomfort and pain. I did not know what the time post-surgery would mean both physically and mentally. This issue alone would have been enough without the LBD.

What happens next with the cancer issue is anybody's guess. At the end of this month, I have my next round of CT scans to check for possible dangers. I am scheduled to also have a full bone scan and then in early May the surgery boss and Flinders Medical Centre Urology team will have a phone consultation with me to work through the results.

On a lighter note, Ruth and I still manage to get about as best as health permits, we are no way house bound and still enjoy some aspects of life. For me, solitude and being reclusive is a big part of day to day living but I keep as busy as I can when I can, I just potter around. I am still very domestic, I love to cook, yep under supervision, and having the unit here in Ballarat adds to my pottering day because there is always something to be done. Gardening is fun, always has been, my Green thumb knowledge, ability and love comes from my mum, she was a great gardener and loved her time outside in her own patch of ground. Joan gave me my love for the garden.

After 292 days at Camp Recluse on Green Hill Lake in Ararat I find I am able to relax ok here at the unit, I really miss the camp, the off-grid living and the serenity that gave but being indoors definitely has some advantages. Maybe there is a personal safety to being here in suburbia that Camp Recluse didn't offer. I am adjusting and it is sort of ok.

Recently, Ruth and I had a road trip to Broken Hill, I was given the chance to head up to the Hill and call a Sunday night TAB greyhound meeting.

Yeah, I know, some days I can't remember my own name but here I was on the national stage calling the dogs out of Broken Hill, how cool. The meeting had 11 races and 83 dogs, how the dickens I got through the three grueling hours was one of life's mysteries. By the last three races I was really running on empty and needed all my life smarts to get through.

But I did, I pulled it off and for me it was a great night, at 70 years of age I called the dogs again and the personal satisfaction that gave me was immeasurable. I am so grateful for the opportunity presented to me by the Broken Hill Greyhound Club; it was tough but so very exhilarating.

I know I achieved an enormous life milestone given where things are at mentally, and I will always be so thankful for the opportunity. The hours of preparation heading into the night, the concentration required in the caller's box and the smarts to make it all happen were all there, it all fitted in and I got through, very tired but I made it. My life experience from broadcasting came back when needed and things went smoothly. How did I do, I'm reckoning I scored a 5 out of 10 but with that mark I know I gave it my all and did the best I could and for me that is all I could possibly hope for. I felt so blessed, I have tears just thinking about it.

The following week Ruth and I headed over to Adelaide to collect our personal belongings from my storage container in Aldinga. Having the unit in Ballarat meant we could finally go collect what was ours, bring it over to Wendouree Lodge and set this place up as our home. We had both been waiting for this day, living off-grid meant we were restricted in what we could travel with and what we had to leave behind in store for so long.

We hired a moving truck from Budget in Ballarat, Ruth was a truckie for the road journey and somehow, we made it happen.

With 1400km covered in the truck, hours of loading and then unloading it was massive, a two nights stayover in Adelaide, it was all so very tough, tiring and physically so demanding. But yep, we did it. Our personal stuff is now here in Ballarat and the next phase of our life journey begins. Lots to do still but we have everything we need right here.

Across the 8 days with Broken Hill and Adelaide we covered 2918km, that was just full-on travel and as I am no longer allowed to drive then Ruth was the lady behind the wheel. She was amazing, simply amazing and her effort to drive so many kilometers over so many grueling hours made her a legend. But, as said, she did it, and together we made it work.

The downfall of course is the drain so much travel, so much hard physical and emotional work had on us both. It came at a price. Ruth was just knackered when we finished with the truck, she just vegged and slept. She deserved the rest and down time; it was tough on her.

For me, I was flat for 10 days, the effort needed mentally to call the dogs at Broken Hill, the effort needed physically to work the truck, and the endless hours of travel took a toll. Together Ruth and I did all we had to do but the recovery was something else again. 

I have not been writing much in recent months for my JonnyG Remembers blog. For me over time, writing this has been the best sort of therapy I could manage, working through my confusion and getting into words about my journey has been enormous for my inner sanity. It has helped sort through, in part, my cognitive troubles and it gave me reason to try and make sense of the changes coming my way with LBD. I have enjoyed the opportunity to pen my blog, to get my different posts added here for me to look over when in a decent frame of mind.

Now, sadly, I have lost the drive, lost the desire to write new posts for the blog and that to me is deflating. I am depressed, I am struggling with life, struggling with people and trying to move through that season and get my journey that has eluded me back on track. I am simply lost, I cannot get my mind going, I cannot get the motivation needed to write more often. And for me, bugger, that is sad. Writing has always been my special superpower and now to have that missing on a day-to-day basis is, well, as said, deflating.

And sadly, for this post, no JonnyG funny to end on, not feeling so flash at this minute and my humor seems insignificant, but maybe when we meet again, I can let you all in on a joke ... thanks for reading, I do appreciate the support from you all.

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Having the chance to wind back time and call the dogs again was pretty darn special, the Broken Hill Greyhound Club invited me to call a TAB meeting in March and it was a wonderful experience ... sure, it was a tough 3 hours, 11 races and a full on time, but somehow I managed and got through ok, it was more than I could have hoped for given where I am at cognitively ... and as I say, at 70 years of age I was definitely the oldest greyhound caller on the national scene that night ...

And Ruth and I have had a few visits to Broken Hill, we have had some good road trips and fun times in the Silver City ... one of our go to places is Bells Cafe, it is retro and serves the best milk shakes, they are simply superb, served in the metal containers and of course pineapple is my go to flavor, Ruth, she like chocolate with cream ... and we even found time to have a few drinks after the dog calling time, the Broken Hill crowd really looked after us and we were very happy to stay on and have a drink and some food ... and Ruth, what did you drink, was it a Pinot Noir? mmmmmmmm ...

The truck trip to Adelaide was full on and rather testing, 1400km on the road, lots of heavy lifting as we loaded and then back in Ballarat it was again a heavy time as we unloaded ... but it was a necessary thing to do, now we finally have all our personal furniture and belongings again after it all sat in store for over 2 years in my shipping container storage at Aldinga ... so good to have our things back ...

RUTH BOUGHT A JEEP

Ah, Ruth and her new Jeep Cherokee, she is so proud of the new motor, we named it the Ruthie Jeep (RJ) ... it has been a work in progress for her getting to this point but it all came together and now Ruth drives a Jeep ... good car, it goes ok, 6 cylinder, diesel, lots of bells and whistles and is great on fuel, top mileage ... and now I guess I just have to live with the fact that I will always hear Ruth saying,"I bought a Jeep" mmmmmmmmm ...