Coming out of my addle-brain coccoon. My cycle of life. Today, unlike few days ago, I shouted orders to the old frontal temporal lobes, “We have company coming!!! Wake up. Get me moving. Eat. Shower. Unload dishwasher. It’s me, Vicki, and I am still the Boss!!!” Well, yeah. About as much as a mom is the boss over stubborn 2 year old. ;o)
Of course, the cooperation is exhausting. An hour and a half to shower and wash my hair. Exhausted. Eating. Wiped out. Put garbage on porch for neighbor to take out. Back cries out for medicinal bustier. Stuffed things in bags threw in my room, just in time to sign in for our twice weekly FTDSufferers forum. My respite. My friends. I cannot express how amazing it is to talk to other warriors, defying odds.
My Gary Larson cartoon: If I had Gary Larson in my pocket, I’d like him to picture what appears to be rising up from our conversations about how it feels to not be heard, for professionals and nature want to take our voices, how we are the test mice, we run the maze of appointments, referrals, multiple simultaneous diagnosis. We even, in our dying by degrees, have created a documentary about FTD (Susan Grant) that I keep promoting here. And we are met with indifference, or worse the medical world of politics and agendas.
So, Mr. Larson & Family Circus Bill Keane, we need another of those ‘map’ cartoons showing a day or week in the life of an FTDSufferer. Zigs, zags, obstacles, cliffs, valleys, and dead ends.
And the mascot to represent this is a Guinea Pig in armor with a lance, riding a hippo into battle. I know, a threatening image that strikes terror in my heart even as I type this. LOL. We stand head and shoulders over the lemmings and lab mice.
Sceintists in a lab look at the mice and the guinea pigs, in armor, on hippos and say, “What are we seeing here? A revolt or a new type of guinea pig?”
How long before we can move from Don Quixote to a victory, however small it is? Remember the old adage? How do you eat an elephant? One bite at a time.
But our hunger is fierce, and time is not on our side. But nothing except death will deter us from preventing this from exploding into the harried, busy, stressed, multi-tasking – and unsuspecting – population. As it will, unless someone sacrifices all that they have, knowing that prophets seldom fare well. But when I am with them in our forum, I know we Guinea Pigs put our little paws together and like the football huddles, we shout “GO! FIGHT! WIN!”
And that’s the spot where our mascot leads into battle.
Are you there, Papa? It’s me, Vicki – the one on the hippo who looks a bit like Annie Oakley.
FTD Support Forum for Sufferers meets on Tuesdays and Fridays at 2:00 Central time. Register, then meet us there.
Learn about Susan Grant’s amazing documentary on her site, FTD the Other Dementia – Planning for Hope
This post is especially appropriate for this week – Dementia Awareness Week in Great Britain. We need to get people – docs, patients, families – to Listen to your stories and understand your needs, and the anticipated explosion in cases of dementia. Thank you for sharing your story the great way you do.