Today was the first time that my conversation on the phone shifted from normal to s l o w and gutteral. The sunshine on the new snow shifted to darkness in one fell swoop. I scared both myself and the Credit Union lady … one sure way, I guess, to have creditors stop calling.

But it wasn’t funny. It was frightening. My friends have seen it happen, like my brain has endured a mudslide. And then a few normal words slide through, and then it’s covered again. I think I must sound like someone who has had a stroke.

I know one of the harsh symptoms of this affliction will be lose all ability to communicate. I think that’s everyone’s worst fear, like an Edgar Allen Poe story. “I’m still here!!” Like the Telltale Heart I will be walled up in my mind.

They now are happening a bit more frequently. But like all my symptoms, they ebb and flow. Attack and fall back.

At night, at final Papa goodnites, I wonder – and have yet to discover – if I will still be Vicki in the morning. Even I am starting to find I am entertaining thoughts of assisted care. They told me I would know when that time was. I think they ar right…

xo, Vicki

Well, I know I left you all hanging on the edge on Friday with the closing of whether I would shower or not. I didn’t realize it might cause insomnia for so many! So here is how the ‘rest of the story’ played out:

I pretty much finished the day where the story left off. BUT

1) yesterday I got my game on, wrote a shopping list, then 3 hrs later

2) I shopped for groceries for the month, alas I pooped out after 2 short trips with groceries from the car for the unloading. Fortunately, we have Michigan refrigerators (which start around Thanksgiving – you can store leftovers in your BBQ, garage, back porch or car). Unfortunately, I didn’t think to say ‘pack produce altogether’, so while I scanned as much as I could, sadly the menu this week will feature Wilted Lettuce salads.

3) Today, with Communion coming, how could I not shower? (I offer that one up as a Big Prayer for y’all.) So the hygene is done … for how long I do not know (sadly for visitors, but we don’t sweat in MI either)

4) Throughout the day brought in a few bags at a time, I think there were at least 1,000.

Now they are all in my kitchen and need niches to go to, but the Super Bowl is on … ;o}

oh and

5) I have a pork shoulder in the crockpot for pulled pork sammiches later during the game.

So I still have my ‘game’ on!

xo, Vicki

Before I fall asleep, after I say good night to Papa, Sofia and Jesse and pray for my friends and family, as I have throughout the day, I sometimes pause and wonder…

what or who will I be when I wake up? Was today my last good day or will I be healed, or at least halted in my deterioration? My studies show it could happen gradually, or truly overnight.

So, as I grab my ‘glow in the dark rosary’, if this night goes on forever know this:

I love you all more than I ever thought I could. I am the luckiest person I know to have so much love surround me every day. And should I not remember what has transpired today, I will remember you in my heart for the rest of my days on earth and as I go to my best home ever.

I love you. We fight a good fight. We are never alone…

xo, Vicki

I’ve just finished a late night chat with a young person diagnosed with FTD/Picks. Healthy specimen of a human, daredevil, entrepreneur, philanthropist; earlier listened to a the daughter of a woman who was a judge, another whose father a professor and linguist. An athlete of world renown. A mother of 3 young children diagnosed last year, whose husband just left her.

The thing we all have in common, besides this damned unknown disease, is our work ethics, our intelligence, our career paths, our life successes. And trying to remember if we ate lunch, or took our meds.

Lawyers, accountants, physicians, musicians … it seems like the more we pushed our brains, and stretched them to get that last project done, wrap up that final paper, meet that deadline, well it’s like our brains have finally snapped. Like we broke them somehow.

We thought it was stress, no, maybe depression or anxiety, plain exhaustion or insomnia. But the lethal mix only threw us from finding the truth earlier. Not that it would change the course of things with our disease. It will consume us, some in a matter of months.

But I would not have waited to enjoy life more. One more customer or one more Catholic won’t matter in the end. But I let my quality of life sift through my hands thinking if I worked just a little harder, a little longer, then ‘someday’ I would catch up with my family and friends. Someday I would see Europe, or Lexington or Indianapolis. I would have enough money. I would spoil my grandchildren. I would have made my mark on the world.

And I guess what I am saying is any marks I was going to make have been made. I will have to be satisfied that my trips get me to the grocery store, maybe not Italy. My world has become smaller. Quieter.

But I am not giving up. That’s one thing I never have been good at: knowing when to say it’s over. And I pray for all who have touched my life on that thing called Facebook and now through this blog.

We are alive!! Just by communicating we are saying we are still here. Not done. Not through.

xo, Vicki

The story of the rainbow is that it was God's promise to Noah that there would be no more destruction to the earth, and a dove brought back an olive branch as a sign of hope, of peace. Even though life looms barren, it will be laced with the colors of the love of my family and friends, and though I lose everything, I will still have more than I could ever, ever hope for.