Vicki's Voice

Archive for June, 2010

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.

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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 is the 5th time I’ve gone into the kitchen in the last 10 minutes. I get there and don’t know why. I come back, settle on the couch. Feel compelled to go back into the kitchen. Even as I type I know there is something I wanted to do out there. I want to go back again. But I know, for the moment it’s lost, like I am at the moment. And maybe just writing will settle me down, pull my mind back into the moment.

I’m tired, listless, fractured. Checked 5x this a.m. to see if I took my meds. I had, but it took a few more times of checking to satisfy my mind, my very restless mind stuck in a listless body.

I don’t like days like today. Where getting dressed is procrastinated until there’s a knock at the door, hurriedly putting on what I’d left on the floor the night before. Of knowing I might sleep in these clothes and wear them again tomorrow. Like I did as a kid, hating to get up and dressed for school in the dark, cold of a Michigan winter. PJ’s, Catholic school uniform layered on top of them. I know I wasn’t alone doing that, cuz most frigid days the boys had pj bottoms hanging out below their trousers.

But it’s not winter, I am not 7. In fact, it’s a beautiful summer day with soft breezes blowing, grass dappled with shadow and light. I’ve tried to go outside a number of times, but no cooperation coming from my head nor my body.

I hate how my will cannot take control over my mind and body. That no order I demand is even acknowledged. And, as I close this, I know I will have to go back into the kitchen again, scanning everything, trying to settle my FTD brain down.

Love, Vicki & Scarecrow

I am humbled and pleased that the story and headline of my award acceptance piece was run both as a major article and highlight. I don’t have the full article but here is the teaser:

“Award-winner says goal of communications to give voice to the voiceless

NEW ORLEANS (CNS) — Vicki Wells Bedard, honored for her work in diocesan communications over the last 25 years, urged an audience of Catholic media professionals in New Orleans to help her share her voice about a rare disease called frontotemporal dementia affecting her and about 250,000 other Americans. “As church communicators we know how important it is to give voice to the voiceless,” she said during an awards luncheon June 4 at the Catholic Media Convention in New Orleans. “Help me tell more people about this terrible disease, this dementia so often missed or misdiagnosed until it’s too advanced,” she said. Bedard made the remarks in a videotaped speech in which she accepted the 2010 President’s Medallion from the Catholic Academy for Communication Arts Professionals. The award, the academy’s highest honor, recognizes lifetime achievement and service to Catholic communications. She was present at the luncheon, held during the joint convention of the Catholic Press Association and the academy, whose members work in film and electronic media. Faith magazine helped fund the trip to the convention for Bedard and her daughters.

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This clip was forwarded to others who have linked their newspaper or website (catholic dioceses); tomorrow I will be interviewed about my life as a Christian and FTD ‘chosen’. Other Catholic organizations have picked up the news piece as well.

Susan, Cindy & Elizabeth, just look what you’ve started ;o)

Love, Vicki

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Added June 15: AmericanCatholic.com published the full article on their website, and we hope many other publications and websites share the story too so more people can learn about this disease that affects so many persons, yet is little known nor diagnosed effectively. Jim Coyle

My daughters are amazing. Oh, and the son.

But yesterday was Beth’s day. After long months of challenges, facing living as the cold, harsh winds of life took away her breath, scarring daily at her soul, realizing her ultimate fears. It stalked her dreams, it removed prayers from her lips, no matter how hard she held on to her beads. It left her “hope” chest empty, and her checkbook.

And she took each buffering, each devasting new reality, with her head held high, accepting the love and comfort of friends and family. Getting up, remembering to breathe, and go about the busy-ness of raising 3 teenaged sons, teaching, helping others. Some days she performed in a daze, but she is never one to give up. Her strength is amazon-like, a warrior woman.

But, yesterday she glowed at her 2nd son, Josh’s Open House. Done without spousal help. Courageous enough to let others in to assist her. And she was amazing, my little girl.

She welcomed a stream of family and friends, was positive and glowing, so much so that if one didn’t know it wasn’t always a 4 person family, they’d not be the wiser. She was gracious, caring, funny all the while totally exhausted from her role of caring for me, traveling to New Orleans, working on her Masters, taking Josh to CMU, and preparing this party.

But the height of it for me, was the video letter she wrote to him, singing his special “Joshie” song to him. Beth, I was never prouder of you. You are an elegant woman, a funny, crazy child of mine. A new person I’m glad to meet, who so many years ago, closed up to be safe.

Keep blooming, dearest Beth. The best is yet to come.

Papa? It’s me, Vicki.

To Beth and her new beginnings. And to the wonderful memory of these two silly little girls of mine (r: Andrea) who woke me up with giggling and stories that erased 35 years of my memory to summer nights, trying to get them tucked in and asleep.

Today in New Orleans, at the Catholic Media Convention, Vicki Wells Bedard received the 2010 President’s Medallion, the highest award presented to a member of the Catholic Academy of Communication Arts Professionals. I was honored to be there with Vicki when she received the award, and wanted to share this audio recording of the award presentation, which includes a very moving response by Vicki.

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Vicki will soon be sharing her thoughts and feelings about receiving this recognition by her peers. Receiving this professional award has been a real blessing for Vicki.

Jim Coyle

(Note: We’re using a Flash audio player. Some web browsers may not display the player, or connection speeds may affect playback. If you encounter a problem, you may download the audio file and save it to your computer for playback. The file size is 12 MB.)