AheadOf The Curve

[Poppygail]

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.

Take care,

Randy

[Lori56]

I so sorry to hear that more that sorry I will pray for you and your family I know you understand I want to say more but words are hard for me to express

[Poppygail Ambassador in reply to Lori56]

Thank you so much for your kind reply Lori.

[ChristianElliott Partner]

Randy, thank you for sharing a very poignant moment with us. I am struck by your continued ability to share, in some detail, your experiences with LBD.

All the best to you and yours. Christian

[jeffcobb Ambassador]

Randy; like usual, since we talk so much (but still not enough) I would let others respond first. Plus I didn't want to freak anyone out with my weird POV. As I have tried to say offline (well, off THIS line) we seem to share a fairly pragmatic view of this. I am pretty sure I am in your same neighborhood cognitively, some pluses here, some negatives there but overall, I think we ride the same bus to Crazy Town. Its funny though, its not that I fear or dread that date some 24 months in the future for me, is that I am stressing not getting something important done before then....but I can think of what that thing might be, I just know in my gut there are things I want to complete before....PPS (Potted Plant Status) strikes. I know there are the obvious things like legal stuff but its the non-obvious things, things that will maybe only mean something to you and your caregiver/wife 2 years down the road but its damned important...whatever it is. I have and continue to agonize over how to spend this time. I know my abilities nearer the end will be nothing like what I start with so I have to plan accordingly. I think the weirdest part of all for me is I realize I am strategizing things like I am terminal on that date when I will likely live for a handful more years, all things being equal. Don't worry, I don 't have that "might as well be dead" thing going on; thats just not me.

To turn this all the way around, with me worrying about missing doing something vital with this period, I also find myself asking, I worked my ass off my whole life, 2-3 jobs at once were not a strange situation to find me in. So with this time, as my abilities decline, why am I still throwing myself onto my sword (engineering term for killing yourself to meet some deadline) at this point? Is anything THAT worth it? So part of me is looking at this time remaining (cognitively) as some quality F.O. time for me. The vacation I never got in real life. I think helping me in this is my wife/caregiver who is really a kid at heart and so is ready to join in anything I have going, no matter how immature. She is my enabler.

One thing I didn't see coming though is the pain->cognitive decline relationship and today was a day that is usually a day of joy and festivities around here, Harvest Day. On this day we put all other things aside, light some incense, program a nice long musical playlist and start that pumping out over the bluetooth speakers. Then we sit and have coffee and trim cannabis, sorting it into different medicinal categories and prepare it for the long-but-necessary slow dry and slow cure process. Its just a "fun" day all around...well now the pain from stooping and harvesting is ruining what brain I have left for this, so today found me dumping my good pile into the trash, mixing the trash into the good stuff, throwing the trophy buds on the floor, just really screwing the pooch left and right. This is something that will be denied me in another year, tops. Thank the deity Beth both likes trimming and is good at it.