LEWY BODY DEMENTIA
The unpredictability of Lewy Body Dementia is a real stumbling block. For me, as this journey with LBD develops the changing landscape of symptoms is very challenging.
In the beginning that was tough. Medically, Ruth and I had no idea where things were at. We could get no real answers.
Looking back my thought is this. GP's and clinicians are not well equipped to make any sense of LBD, they seem to fail to look at this cognitive health decline away from the 'old age' narrative.
And that is darn frustrating particularly as said, early on in the journey.
GP's are reluctant to look outside the box it seems, they want to be dismissive when you explain some of the early signs and that is a real problem. Even if they ever entertained a dementia pathway, they certainly dismiss LBD. Awkward indeed.
Because for Ruth and I, we also did not know a lot about what I was exhibiting in terms of dementia, and we were really just discovering and understanding that I had some form of cognitive issue.
So we too missed some of the early signs at a time when they were happening. If anything, we did think there was a vascular connection in my cognitive behavior resulting from my heart attacks in November 2019 and the 60 hours of medically induced sedation on a ventilator that then followed in Flinders Medical Centre.
Our thought was the two were connected. That sort of masked our thinking and probably, in reality, got in the way. But gee, we were really flying blind.
That made the early days awkward, we were very new to this LBD journey I was on and as said, the medical folk were either not equipped or reluctant, or both to investigate what was unfolding.
Had they been more open to a diagnosis of some sort around LBD then I believe the start of the journey could have been handled better.
I am not big on medication, but once I developed the right-hand tremors then I understand there is a pill to pop that can delay that particular onset. I use that as just one example of what was perhaps possible earlier on.
But it was not to be.
Maybe a better understanding of LBD would have helped, the Mini-Mental Exam, a test done by GP's was not helpful, not helpful at all. They do this same test every 12-months it seems, I find that a touch humiliating and really just a feel-good exercise for the health folk. Even if you fail, you don't fail. Or so it seems.
Anyhow, looking back it is easier to spot the early signs, hindsight is a blessing.
As time has passed getting reliable information on this illness from the internet and support groups is not hard. There are many good sites on the net that carry a really helpful and accurate understanding of the disease and support groups outline detailing and recording many of the LBD issues encountered on an individual basis.
So for me I find the info really important and helpful. The issues experienced by others answer some of the questions I have about my own journey.
But for all of that said and for as good as the info is, living the journey with LBD is the challenge.
From an LBD site I like it had this to say about the cognitive fluctuation …
One of the hallmarks of Lewy Body Dementia is the fluctuation of cognitive function. Often, a person may function fairly well one day and be totally disengaged with a profound loss of memory the next.
Now, that looks to be so true in my journey. The difference between cognitive thoughts from day to day can be like chalk and cheese. For that said, to actually read that the symptoms I experience fit with LBD is really a massive plus.
Maybe the medical clinicians could have mentioned this early on instead of using that strange thought process they have around the idea that you do NOT exhibit dementia signs often enough for us to look beyond what is happening with you in this medical appointment.
Because, as we now know, today maybe I don't exhibit dementia signs, however yesterday I did and tomorrow I might have the signs back again.
Just back to the line from the LBD website, one of my issues at this time is not really loss of memory so I do not experience the profound memory loss as talked about.
So, what happens is that I can think of a memory in my mind, but I can at times then struggle to be able to verbally express that thought in speech. In this moment, the mind and the mouth are not really in alinement on the thought.
Ruth tells me that the word for this is Dysphasia.
I have mentioned in an earlier post about this inability, at times, to find my words in conversation. I find that frustrating.
It is awkward and embarrassing for me, I am finding that I can become disengaged at this time. That is no big deal really, but I do find that subconsciously I am now removing myself from conversations and over time I do see that the subconscious thought can actually become a conscious thought.
For others, maybe it looks like I am not interested in a social conversation but to me, what is really happening is that I am scared of looking like a dill when I cannot get the words out, so as a safety mechanism, I simply remain silent.
Now that is a problem.
Ok, will leave things here for now. I do have a second post coming this week, I have delved into my Hey Shorty book and lifted a passage from there to include here on my LBD blog.
So, stay tuned. Thanks as always for checking in.
Go Cats ... It's AFL Gather Round in SA this week so the Cats will be at Adelaide Oval on Sunday.
Oh, yeah, ok, a JonnyG thought before I go ... Hey, I would not forget ...
That joke I just heard was so funny I forgot to laugh ... said the sarcastic old man with dementia
Thanks for the update John. Very informative and interesting.
ReplyDeleteYou have still got it mate 👍🙂 xo