I’ve be wrestling with whether or not to write this post since Friday afternoon. I get really tired of being a Debbie Downer when writing these things. I can’t imagine you come here to continually hear me whine about the less than positive aspects of living with LBD. But I eventually came to think of my original intentions when I began documenting my journey down the long dark path that is the progression of Lewy Body Dementia. I told myself, and thus implicitly implied to you the reader, that I would always render the unvarnished truth of my experience, leave nothing out, good or bad. Because there is so little out there from the patient’s perspective, I feel it could be extremely valuable to someone else to see the experience from the patient’s eyes. And so, without further hesitation, I will dive into my latest advance on my walk with Lewy.
First and foremost let me say I have been greatly blessed in my life. Lewy Body Dementia nor anything else can take that from me. I was fortunate enough to be born into a wonderful loving family, a bit overprotective and sometimes kinda weird, but one that I could not have asked more of. I have been lucky enough to have been born with some natural intelligence, once I matured enough to realize it was there and I needed to make use of it, it has served me well. I received what many do not, an awesome, warm, loving second family in my wife and children and all those extended from there. I received a top notch formal education, graduating from one of the premier dental schools in the US by the time I was 25, the 3rd youngest in my class. And there is so much more. Too much to list in this limited forum, just know I realize and appreciate I have been blessed. This is were the title of this post arises. The origins of my life have always placed me “ahead of the curve” as I have gone about my daily meanderings. And so why would I expect LBD to be any different? News that we received Friday afternoon drove home the fact that it apparently would not be. Let me try to explain.
It has been approximately 18 months since neuropsych testing revealed a formal diagnosis of dementia. Clinical presentation, and other factors have led to the diagnosis of Lewy Body Dementia. Several months ago my neurologist suggested that I undergo another round of testing just to see how much progression the disease had made. When the testing was complete I noticed the neuropsychologist, a very amicable fellow, had a “look” on his face so I inquired as to his thoughts on how everything had gone. He, of course, he stated that this was just his preliminary opinion based upon a quick scan of the results as he administered the tests, but it appeared to him that I had progressed much faster that he would have expected. But that I shouldn’t worry about it, all would be explained at the results appointment. Which was Friday afternoon.
The testing results showed that my already beleaguered memory and reasoning abilities had fallen off a cliff. Several of the measurable areas did not in fact even register on the plotted scales because their percentages were so low. He said this level of decline was a surprise to him. It wasnot by any means anything unheard of but definitely unusually rapid. Again, I’m ahead of the curve. Yeah me! When my wife pressed him for a prognosis he reluctantly provided the following. First he held out the caveat that he is the eternal optimist and hopes this is the absolute worst case scenario that will not come to fruition but at this rate of decline he would guess that I have 18-24 months of functioning cognition left. After that, the potted plant phase of my life would seem to be ready to set in and then my inevitable expiration date.
He suggested we make sure “all our affairs are in order” while I still have some clarity. Thankfully, we have already done this. For us, this involved setting up both a Revokable Living Trust and an Irrevocable Living Trust, Living Wills, Last Will & Testaments, Durable Power of Attorney, Medical Power of Attorney, funeral arrangements, burial plots, etc, etc, etc.... Man it’s hard to believe how much there is to do to get ready for the end of life if you don’t want to leave that burden for your loved ones to have to take care of at one of the worst moments on their lives. To my mind, it’s one of the last and greatest acts of love and kindness you can show. One of the last things we still have on our to do list is tour some dementia care facilities while I can still have some input into the ones I like. I may never need one but better to be prepared than not.
So, it’s been a long weekend contemplating the possible future. Thankfully, I, like the neuropsychologist, am a glass half full type guy and believe that this was only the opening salvo and that things will eventually slow and improve somewhat. At least that’s what the eternal optimist in me says. Only time will tell. Hang in there with me to see how the journey unfolds.