As some of you may have noticed, or maybe not, that’s neither here nor there, I have been pretty much AWOL from this site for several months. Much of the blame for my absence lies at the feet of a dear old friend, my ability to express my thoughts through writing, because this dear friend is making fewer and fewer meaningful appearances in my cranium of late. Oh, he doesn’t mind knocking on the far recesses of my subconscious just as I’m dozing off, or already occupied with some other trivial matter, only to fill my mind with an amazing array of ideas concerning LBD, the absurdities of living with this monster daily, both as a patient and as a caregiver, the importance of caring for and communicating with your family...and a million other ideas such as these.
However, most of the time, like 90% in all truth, when I can finally get to the point where I can start to put those ideas down on “paper”, they’re gone, not even a hint of what I intended to covey is still lodged in my shriveling brain. And my “friend “ who helped put all those ideas in my head to begin with, well, of course, he’s gone into hiding. Says he has no recollection of ever discussing any ideas. And please don’t bring him into this again...until the next time thre is some lull and he sees an opening in the deep dark recesses.
As the weather has warmed, my cognition has slowly improved somewhat and I’m once again able to occasionally express my thoughts through writing, that’s how this post and the couple that preceded it eventually came about. But, although my posts have always taken a good deal of time to complete, now it is just becoming ridiculous. To demonstrate my meaning, I decided to make this a twofer. The 1st half was meant to explain some of the reasons I’ve been absent for awhile while the 2nd half is meant just to demonstrate how a post that would have been so simple for me 8-10 months ago has taken me the better part of four months to complete now. It’s still not what you might call good reading but I hope it serves to get the point across. Sorry about being so long winded, I just didn’t know of any other way to explain things. So here’s the marathon post.
I saw my GI doc yesterday. He’s a very knowledgeable, professional, kind, considerate man who I have known for many years, professionally not personally. We tend to tell each other what’s on our minds without a lot of beating around the bush. That’s why, toward the end of our visit, when he casually mentioned I seemed to be doing really well neurologically, it took me aback when I found myself mumbling something about mornings being my clearer time, evenings were blurs, etc... In this moment, the concrete thought passed through the cheese trap that is my brain that I let very, and I do mean very, few people realize what my day to day, hour to hour, or, for that matter, even minute to minute mental struggles truly are.
In that moment, sitting in that exam room, trying my damnedest to hold a normal, reasoned conversation, remember words which made sense in the contex I intended, and just answer random patient history questions was taking every ounce of mental and physical effort I could muster to maintain that pretense. And I realized that I only allow my wife most of the way through that veil and occasionally my son and that it’s becoming very tiresome. I’m not sure how much longer I will have the mental energy and stamina to keep it up.
It’s tiresome seeing the disbelieving looks people give you when they 1st find out you have a disabling disease but look perfectly healthy. The can’t look past the facade of the physical body, which most likely will remain relatively healthy until late in the disease unless there were preceding conditions,the disapproving looks that says there can’t be anything wrong with someone who looks as healthy as you. They can’t see the fog in my brain, crowding out almost every conceivable memory or timeline of recent events, my struggles with remembering my children are 36 and 35, not 12 and 10, and being panicked when they’re not home, in their rooms, as you think they should be. They don’t see me walking up to the love of my life, my companion of 41 years, and barely recognizing her. But yet intrinsically knowing that she is my one constant, the one that will always be there for me and I for her, and grabbing her and hugging her like my world would end if I ever let go. They don’t see any of these issues or a million others just like them because I can usually muster the mental reserves to be “normal” for a few minutes. They only see the smiling,physically healthy looking gent in front of them.
When I was 1st diagnosed, I used every opportunity such as these to explain to people what LBD is, it’s “typical” progress, the shameful lack of understanding of this disease process in the general medical community...but I just don’t have the reserves to fight past the, “My you’re looking good. I can’t believe so and so told me you were ill.” any longer. If the person is truly interested, I still try to make the explanation as painless as possible, word has to be spread about this dehumanizing process. This is the 2nd most common degenerative mental disease, right behind Alzheimer’s, and no one knows about it.
In the interest of being included, even wishing to keep those closest to me informed of my progression, I find that I more often than not i disguise my true struggles. Its becoming increasingly difficult to maintain the ruse.