I THINK THE PROBLEM IS THAT I'M NOT THINKING

Post 42 - April 15th 2024

My journey with Lewy Body Dementia has had a few twists and turns. It has been difficult at times and fun at times. My JonnyG Remembers blog posts have documented, for me, the journey to this point and I have generally enjoyed writing about how this all unfolds.

This post is long, very long and somewhat complex as it looks at my battle with LBD that is getting so much more pronounced. The post looks at some of my physical health problems, it looks at my depression, the PTSD I carry that does clearly affect my cognitive thinking, so I explore that issue. My pee bag problems are written about in the post, and I also try to explain, at length, how this whole LBD journey sits with me. I try to explain and rationalise the symptoms, what they may or may not mean and where I see myself in how the journey is unfolding.

Some recent health battles both physically and mentally have had somewhat of a curve ball scenario for my journey and some of those have been awkward to navigate. My bladder cancer problems that meant an eight-hour surgery to remove my bladder, urethra, prostate and appendix along with a heap of lymph nodes have been a real test of physical and mental strength.

I have not really handled it well, pain and discomfort for three continuous months took a toll, I stepped back from life and the fallout has been enormous. Depression is rife, my enjoyment of life has dissipated dramatically and most of the things I loved about life have left me. Awkward days, no fun really.

A recent procedure to drain infected fluid from the lymphatic system has been massive in terms of outcome, I am literally pain free in the areas that I battled with for a 100+ days. That is a big big plus, it is so good. I do have some sore spots and my man parts are still somewhat swollen and tender so it is not totally all systems go. 

That procedure to drain the fluid resulted in a three-night hospital stay at Flinders Medical Centre, it was awkward and came with some downside. The procedure saw a 15cm needle and drain inserted into my groin area through my backside under a local anesthetic and this caused some trauma. Somehow, this trauma has really affected my LBD, I have regressed in my cognitive thinking, thoughts and processing skills and that is very difficult to take on board.

The cognitive decline is for me, extreme. I see what it is doing on a firsthand basis and it is an awkward watch.

This decline is LBD related. It is not about forgetting where I left the car keys. Or why did I walk into this room. Or, I was going to do something but now I forget what that was. Or, I can't remember that person's name. Or, so many other simple forgets.

No, what is happening in my mind with my cognitive thinking and processing is way beyond that. I can see and somewhat understand the changes my mind is going through, and it is really difficult, at times, to get a grip on. 

For me, I am having some very strange moments. Moments in time where I am lost, not in a geographical sense but in a personal sense. I find I lose myself, well in my mind I go missing; I can find myself standing in a spot and without having any understanding as to why I'm there or how long I've been there. Then, as it happens, I simply seem to switch back on mentally and get the understanding that I have been vacant in my mind.

Sometimes it is for just a short period of time, but at other times, I'm told, it can drag on a bit. I sort of wake up in my mind and I know I have been vacant in my head, air head type thing, and I have no idea, as said, as to why I'm standing there or how long I just stood and stared. It is embarrassing and it is crap.

I do try to cover it over once I realise I've had a time like this and by laughing at myself I can downplay the vacant moment. Yeah, embarrassing to say the least. But it happens, I know it happens and it frustrates the crap out of me.

It is not so easy to accept that I am doing this so, what happens in my head, not 100% sure.

But blank is probably the best word I can find to describe how I see my mind at these times. It is not a lot of fun; it is difficult to process and very difficult to accept. So, I do simply have to accept that it is what it is but somehow, and this is for my own sanity, I have to get the smarts to cope and to deal with it. Because if I don't, then it will beat me much sooner than it should do.

So, what is it that I see happening with my cognitive processing mindset? What is it that has me take on this blank mindset?

My answer is I just don't know. I can identify it happens but what goes down cognitively before and during these blank times it not something I can identify before or during such moments. It is only after it happens that I have a mental knowledge of these times. That is confusing in itself.

Mixing objects up when talking about them is another extension on my cognitive confusion.

I love dried sultanas as example, I grew up in the Riverland of South Australia so always had plenty of dried fruit to eat. Loved dried sultanas back then, love 'em to this day. Anyhow, I eat the dried sullies with cereal, but for some reason I always refer to them as strawberries, look, that sounds ok, but I know in my mind what I am thinking of but for the life of me I cannot remember what to call them. It is frustrating, I don't even know I call them strawberries, because I am thinking I said sultanas.

That is just one example of this confusion, there are plenty of other mix-ups made. To me, I am sure I called an object what it is but when it's pointed out to me that I have called it wrong, I get confused because it is not something I think I am doing. I am so sure I got the call right, only to find out I did not. For me, that stings, confusion in situations like this is awkward.

Sometimes this type of error extends to names, places, times, dates, historical events and happenings etc. Because I have always had an intelligent mind, one of my superpowers in thought has been my ability to remember say a date in history by remembering where I was at the time it happened, who I was with or what I was doing.

To show another example to explain my cognitive issues, the day I first heard the news that Cyclone Tracy had flattened Darwin on Christmas Eve I remember the date and year by recalling where I was and what I was doing. 

In this example I was driving my new orange mini from Tailem Bend to Barmera for Christmas, and it was the early hours of the morning as I headed along the Loxton to Moorook Road. On the radio in the car was the news about the cyclone, it was a massive event in the history of our country. So, if I at any time I need to recall the year and date, I remember, as said, where I was at that time. I form a mental picture in my mind, and from that I see myself, in this case, driving along that road listening to the news on the radio.

I had been working all night in my job as a fireman during my railways days and after finishing work at 6am I headed off to Barmera to have Christmas with family. So, I can remember that particular time by linking the work, day, road trip to my age, what the circumstances were and that allows me, as said, to recall the day and year through visualization. For the record, it was December 25th, 1974.

Odd maybe but that's how my mind always ticked. Now, sadly, not so, I struggle to be able to drift back in thought and recall times like the one described. So, I have trouble getting events, times, dates etc correct. It is very very frustrating. I can no longer pluck the info I need out of the air like my very intelligent mind once did.

I'm guessing this is the LBD symptom known as information processing. Or maybe it is what the illness describes as visional functioning. Either way, if correct, then I hate that thought.

Look, there are times I am like I was in my past days; my cognitive smarts are there but the times I cannot get this lifelong think pattern to work are becoming more and more. To me, it is very noticeable, very unsettling and again I use the word, frustrating.

And yet another area where I see decline is with my writing, wow, somedays it is like being dyslexic on steroids, I am all over the place. Look, spelling has never been my thing really, getting spellchecker on Word as example has been such a bonus, it's like it was made for me.

But this issue with the writing is a dead set downer, I will be typing away, writing as I have always done but when I look back over what I have just typed, I sit and stare in disbelief. The words are not just spelt wrong, they are jumbled so bad I cannot grasp what I just wrote. I am definitely not liking what is happening.

And it just keeps on keeping on, it gets worse with the cognitive decline. Two areas that are also really having a cognitive impact in my daily existence are the darn shakes I get at times and the talking to myself.

The uncontrollable shaking is something that bothers me because I have no say over it. Wow, that can be a bummer, it embarrasses me personally and while I can sort of deal with that aspect of the shakes, to me it also shows, as said, I have no personal control over what is happening.

For me, with my personality and sensory issues, that is awkward, scary darn awkward.

It does not happen all the time, it is just something that can come from nowhere it seems. It is not about being scared or shaken by an event, it just happens at random. Sure, sometimes I can certainly identify a trigger that brings on the shakes, at other times it just happens.

With a number of ongoing health issues, I am often asked to sign paperwork at health clinics, consent forms, Medicare forms etc. But with the shakes in my right hand, I cannot get a signature that resembles anything like it should. 

This shaking has been going on for a while, is it getting worse? I guess it is. Well, not necessarily worse in intensity, just more often. My right side is troubled most, it is not as bad on the left side. I mainly notice the shakes in my hands, that is the area of my body most affected.

Talking to myself is another issue that I am not able to get a handle on. I know I do it, I know it happens, but at times it can catch me out when somebody else answers a question that I did not know I asked. It is very odd and can be disturbing for me.

The talking to myself has also been going on for some time, it started as the odd outwards verbal muttering, but it has progressed to being rather constant in my day.

Sometimes, it seems, I have these chats on an almost ongoing basis. Seriously, I have no idea initially that I am actually talking out loud, I am using my thoughts as a verbal language and that is what happens.

Sometimes, I catch myself speaking and sometimes Ruth will point out to me that I am being verbal. How long the chats have lasted in any given instance is a mystery, I have no concept of time with this talking to myself.

Chatting out loud in a private setting is all good, but I do worry what might happen if and when I venture out in public. I would not like to be caught out with the talking to myself in a social setting. With that said, I do know that while in hospital recently I found myself having some personal chats, especially at night when I would be on my own. I remember having a nurse or two ask me who I was talking with, one nurse actually thought I had someone in my ward bay. That was an awkward moment.

So, what do I say? What do I chat with myself about?

It is as simple as having a personal conversation out loud. I ask questions, I describe my thoughts, I am often thinking out loud. I chat to others even though I am not really engaging with another person. Often Ruth will ask what is it that I just said, that can be a trigger for me to know I was verbal in thought.

Sometimes Ruth will answer a question I ask even though the question was not aimed at her. Then I get a touch confused because I cannot understand why she answered a question I did not know I asked. That can be a fun moment, the questions may seem odd, the answer is odd, so we have a laugh and do manage to see the funny side to the situation. 

An odd variation of the talking out loud is that I will at times ask Ruth what I was thinking, what it was that I was going to do. Yeah, another funny moment because she has to answer that if it is a personal thought for me, how is she going to know what it was? I guess I am thinking, at times like this, that I may have been verbal and shared with myself what I was thinking or what I was about to do and Ruth was able to hear what I said. Complicated, yeah it is, really awkward but for now we do have some fun with how this is all going down.

With the chats comes at times, some rather odd hand gestures. I tend to point to things and/or rub my hands in an involuntary manner. The pointing in particular is serious as it is very pronounced. Yet, I am not actually pointing at anyone or any object. At times like this I am not sure what I'm thinking, so yet again it is embarrassing and somewhat disturbing.

Ruth will often just nudge me and whisper to me that I am doing the hand thing. That helps and I stop the movements. Like a number of cognitive issues, I am not sure what this pointing and hand gesturing is about.

The pee bag that has replaced my bladder is a massive downer. Oh boy, it really does sucks. I have this gaping hole in my stomach that drains my pee, it is unsightly and bloody scary to me. I mean, I can see and feel my insides.

I cannot get my head around what it means, get my head around how it has become a part of my anatomy and how it just never bloody goes away. I hate it to be honest. As much as I've tried to adapt and not let it get to me, I am still not coping. And I imagine that is not good for my mindset.

With my prostrate and urethra gone then naturally I cannot use my penis, so the bag is my wee outlet. That sounds so weird just writing that little comment so trying to grasp what it all means is actually beyond weird.

This bag is forever, that is difficult to accept. In a previous post I did write that the pee bag look is not about vanity, but it is hard to hide, hard to cover up. When it is empty it can sort of be tucked away into my shorts or trousers but once the bag gets fluid in it then it becomes warm and uncomfortable and regardless of how I try to disguise the look, it is just there. Yeah, awkward.

And I do not use a urinal in a public toilet when out, I need to go into a stall in the loo to empty the bag. No big deal maybe but for me, physiologically that is really a downer. I feel very odd. At home, it is ok, I do not have the same issue, I can simply undo the tap and empty the bag in the loo.

At night the bag needs to be connected to a night bag. A long tube is attached to the bag and goes to the night bag which sits in a bucket alongside the bed. It makes for an uncomfortable night, rolling over is challenged, sleeping on my left side is also a challenge as the attached tube does restrict movement. 

Yeah, no fun, maybe in time I will be ok but for now I am mentally troubled by the pee bag. 

PTSD and physical trauma. While I have always believed strongly in mind over matter one area of mind set that I am learning impacts significantly is Post Traumatic Stress Disorder. Now look, in my past years I never dismissed the impact this had on me, and on other people, I just simply did not understand that people were affected, I simply was ignorant to the fact of how debilitating it could really be.

Some years back I was sadly on the wrong side of a life event that left me reeling from a traumatic experience. At the time it was horrific and while I moved on the blunt reality is that I never tried to make sense of what happened and to then work on the affect this time had on my psyche.

In the better times as the years unfolded it was possible to keep that event on the back burner, sort of out of sight, out of mind. And I reckon that was fine.

But now it does bite, I'm guessing the trauma built up in me and now that I am struggling with physical and mental health, the PTSD comes back to bite me on the bum. It does have a major effect.

Trauma in different forms in my life has sadly been around, some self-inflicted but some not of my doing. Wrong place, wrong time scenario. So, the trauma has collectively built-up and now that I am struggling with health and depression, the PTSD that results from those traumatic experiences comes on in spades. It is debilitating.

I once read that PTSD is like riding a bike, you never forget. I now understand that little saying better than ever. My belief is that somehow, we make space for the PTSD in our life, we move on by learning how to live with it but we never forget.

It appears that the PTSD is triggered at times that just seem to jump out of nowhere. The tight chest, the sweats, the shakes, maybe some sort of flashback? Whatever it be then it is very real and rather awkward to deal with. It does add to the depression, or maybe it is the other way round, maybe the depression adds to the PTSD.

The autonomic effects of LBD also come into play. The most noticeable for me is how my body struggles to regulate heat. I can be feeling very cold at a time when it is not really about temperature, it is an inward feeling, I feel cold from the inside, I feel like I am freezing but no, I do not need an extra jumper of coat, it is something totally different.

In recent times nurse Ruth has been getting me to take my temperature. Apparently, it can be low, normal body temperature sits around 36.5 but I am down to as low as 34.0. I really have little idea of what that means but apparently having a low body temperature is not ideal, if it were to stay in that range then I am needing to keep a close watch on things.

Another issue that I face is heart rate fluctuations. I have always had a low heart rate, it can sit in the mid 50's and while that is probably at the low end of the scale, for me across the years it has been fine. When I am having a bad heart moment then my heart rate can be up over 100 and it is often very erratic. At time I can feel the high rate, I know how things are going.

I guess that the autonomic factors are no real problem in the big picture, but for me they are just another reminder of the changes to my physical body and mental wellbeing. And some factors are not even noticeable, others more so yet they are almost behind the scenes in terms of importance when trying to stay balanced on a daily basis.

And I am really only learning about what the autonomic system is and the part it plays in my LBD journey.

Does depression play a part in what is unfolding? It would be folly not to believe nor to understand that depression does rob you of the ability to think rationally. Depression in a chronic form takes away your powers to act and think with clarity. It really does render you powerless to battle many thought patterns that you would otherwise not even see as an issue. Depression takes all of the goodness from life and replaces it with gloom and doom.

So yes, being depressed is a key factor in cognitive thinking. But with this LBD cognitive decline I am experiencing, then depression is just one mitigating factor. Sure, it is huge factor, but is almost a side effect to what is going down. It is not to be dismissed, it is important to understand the impact it can and does have and it certainly does not help, but these issues I face in my mind are far beyond just being depressed.

With my depression as it sits at this minute, I would rate it as chronic. Hey, I can cope with that in parts, I am able to live with that thought but work around it to the best of my ability. A few weeks back the depression took hold in a major way, as mentioned earlier in this post I lost my love for the things in life that I loved. That depressed me.

For all of that said about being depressed, I still have my sense of humor. I can still laugh, I can still make people laugh. My quick wit has not deserted me, I see the fun in things, and I can still laugh at myself. Look, this LBD journey is no fun, but I do still have fun along the way.

And while I can understand for the most part what is going down with me as I progress with this journey, it is still a shock for me personally when I realise what I am actually doing. Or, to be more correct, when I realise what I am not doing.

Sure, strategies are so darn important in dealing with my LBD and associated cognitive decline issues. I have developed some good distractions and strategies to help cover over and deal with some of the embarrassing moments I find myself in. But I must say that is starting to become very tiring.

For a good part of my time, I can be like a slow-motion version of my old self. And it does not feel good, it probably does not look good. I imagine it is not very flattering.

So, there it is, a comprehensive look at some of the things unfolding with my LBD journey. It is of some comfort knowing that I still have enough cognitive smarts to identify and deal with some of the personal things I am doing. I am lucky in that sense.

Where it goes from here, mmmmmmmmm, who knows? But I guess I have no choice but to roll with the punches and make life as good as I possibly can.

Thanks, as always for reading my JonnyG Remembers blog, I appreciate each and every one of you. For me to be able to write about the journey has been a massive physiological advantage, it helps me so much to pen all my thoughts and LBD issues. 

Cats are 5 from 5. I will leave it at that. 

So, if you have stayed the trip and read this post down to here, you've done very well.

Feeling a touch more generous today so I will leave you with a JonnyG funny ...

When I'm gone, replacing me will be easy ... but getting someone else to do the same shit I did will be darn near impossible ...

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A positive vibe in these testing times is the house sit that Ruth and I are fortunate enough to be doing at this minute ... we are blessed to be taking care of this beautiful property, rural living, all the animals, plenty of roos in the back paddock, warm wood fire, just the best ...

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And Ruth, remember, if you didn't see it, then it did'nt  happen

Mmmmmmmmmmm, on a not so positive vibe, Ruth, just saying ... yeah, I can make a bit of a mess on my shirt when eating, sometimes, ok lots of times ... but, that can be a positive, if ever I need to know what I had for lunch, or breakfast all I need do is check my shirt, ah, looks like weet-bix, I think that's soup there, and there, oops and there as well ... and if I forget to change my shirt from one day to the next, I get an added bonus of knowing what I ate the day before, winner ... also, when we go out anyplace these days I have learned to take a spare shirt or two, you know, just in case ...