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.

Well, it’s Friday, and I have finally got enough energy in my brain and body bucket to say “I’m having a good day!”. Are you sitting down?

1) Unloaded the dishwasher from 5 days ago

2) Loaded the dishwasher

3) Cleared off the counter tops (whew!!)

4) Took Christmas decorations down on Cafe World (Facebook)

5) Chatted with a lovely daughter of a Mum who is in final stages of FTD/Picks (her support page is: http://www.facebook.com/vickiwb?ref=profile#!/pages/Frontal-Lobe-Dementia/107954475086?ref=mf Frontal Lobe Dementia, please visit)

Her own courage is amazing, a strong young woman who majored in athletics and thru an injury, underwent amputation. Is heading back to university and will be trying out for wheelchair basket ball.

Now, to feed myself, take that darned shower and maybe, just maybe, try to pick up a few groceries. Or not. ;o)

xo, Vicki

I do have to say that sometimes, like a gray, dark winter’s day, it is nice to stay tucked into bed, watching neighbors scraping their windows, shoveling their driveways to get to work. ;o)

Yesterday the famous groundhog, Punxsutawney Phil, saw his shadow, which means we have 6 more weeks of winter. In Michigan it would be divine if this were the case! Usually our Spring dusts itself off sometime in June. In honor of the occasion I watched “Groundhog Day”, the movie, where the main character is caught in a time warp, reliving the same day over and over.

With my condition (FTD/Picks) the movie somehow seemed comforting. Decisions often cripple me, leaving me caught in my own time warp. Change is debilitating. Even positive things, like traveling 70 miles to celebrate Christmas with my family – one of my favorite times and events. When coming back home, I experienced 72 hours without sleep, getting more agitated, until finally collapsing.

Friends come to visit, and as much joy as their company brings, I am sapped of all energy and concentration for days. Cannot even turn on a computer, or get dressed.

I get my comfort from my small routine within my home.

A friend, after visiting, said it was like I had a small queue to hold things. (I can see it as a vial over my head, like in computer games, with measurements, starting with it full, and watching it drain throughout the day.) It’s really the same cup, that not only did I drain but fill to over-flowing: public speaking, traveling, training, PR, crisis management, marketing, just to name a few.

Now it feels like it’s never filled with energy, but that I run on empty. The last 2 years trying to keep pace with my former self, was impossible. How I did it at all amazes me yet.

Now it is a full day to rise, wash up (that’s a whole ‘nuther story), watch TV or use computer, and eat. Somedays that’s too much.

I wonder if others feel the same way? how they manage? or, how long before they had to give up entirely?

How will my “Groundhog Day” end? Will I find a way to break out, or will I reside with the comfort of a daily ritual, day in, day out.

Only God knows. And I hold onto his hand, as we walk this path together, leaning on family and friends…

xo, Vicki

Tomorrow I must remember to say outloud “rabbit, rabbit” a family tradition that we are sure that, said first thing, will give us good luck all month. I surely hope so…

The weekend was wonderful, good friend a’visiting and watching Joshie in the Honors Band symphony, looking handsome and proud. I like the smaller version of the Whaley family because it holds so much potential now and I think Beth & her 3 sons will make such a healthy set.

Altho exhaused, visiting, having my mouse working (whoopee), watching great movies is always perfect.

I don’t know if others with FTD have speech abnormalities, but I find if I am trying to make a point with strong emotion or conviction, my mind clears out the clutter, slows down and I “…speak  …like  …this” –  slowly, with pauses. This is new over the last few months. And of course some days I can’t stop jabbering.

The last few days were interesting as I added new words ever unspoken to my vocabulary. The only one I now remember is, upon seeing a sparkling kitchen, I said out loud, ‘this is magicifically!” or something to that effect.

Perhaps I am finally remembering toddler Nick’s language he had with his invisible friend, Acusina. Wonder if I will soon be able to see him, too.

All for this day. Remember, anytime after midnight, and first words off your lips “Rabbit, rabbit”.

xo, Vicki