About Vicki’s Voice

In July, 2009, I was diagnosed with Frontotemporal Dementia (FTD) – Picks disease. Looking back, there were symptoms, but no explanation for what I was experiencing. As happens with most of the estimated 250,000 people with FTD in the United States alone, the correct explanation and diagnosis didn’t come until the disease had been progressing for probably 5 years.

I have been searching online for other people with FTD, hoping to hear their stories and share mine. I am grateful for the few I have found so far, and am continuing my search. With the hundreds of millions of people on the Internet, there must be other people like me online. We need to share our stories while we can. And the more you learn about this disease, the more you’ll realize how true these words are.

I hope that by sharing my story, I’ll help other people with FTD-Picks, their families and their friends. And please let me know about people and resources who can help me and my family – and help tell more people about this terrible disease, so often missed or misdiagnosed until it’s relatively advanced.

The earlier entries on this blog are notes I first posted on Facebook starting Spring 2009. As you read about my journey, I hope you’ll feel free to write comments, to tell me and other readers your story, to participate in the online conversation.

Vicki


Permanent link to this article: https://vickisvoice.tv/2009/12/about-vickis-voice/

FTD not just bouquets

Today was a black day. I didn’t want to harvest on my FB farm, or cook in my virtual cafe. I didn’t do the exercises I desperately need to maintain my “buns o’steel”, and learn to walk better. Living with this disease is a quiet thing. I have days, like today, where I can’t move at all. There is no energy. Great apathy, though. There is no muse to say “knock this shit off.” And so I watch the morning sun fade into grey, then darkness. Unable to move. Unable to Facebook. And I wonder if I should photograph every wall and space in my home, so when I am in a foster care home I can say “this was mine, and I earned it. And I loved it. Or, “this was Gus, my dog before that great fall down the stairs.” And the frozen annuals and perennials on my deck would have been amazing this last summer, or next spring and for all springs to come after me.

I once had a friend who would challenge me and make be silly. totally playful, but they are gone. Maybe it’s my disease, maybe it’s my changing personality, maybe they are just too busy. He is gone, and much missed. My Muse’s droll humor, and Eeyore-esque mannerisms was what kept me trying. Laughing. But although I have a void, God has sent in new reserves, other kinds of muses.

There is an organization, The Association for Frontotemporal Dementias (FTDs), that has a page for patients and caregivers to blog. Mostly it is for caregivers. But there is nothing on the patient blog. I called two days ago. Basically by the time they find a diagnosis, it is too late to post for patients to post. “too late to post”. Facebook has what 400 million viewers? Isn’t there one person like me out there anywhere?? Am I the only one left who can write and speak?

From “What if it is not Alzheimers?” it lays out my future, which I had just rehearsed with my family while hospitalized. “At the end, they will lose the ability to speak, they will become mute.” There is no cure. There is no treatment. It sounds yucky. Social blunting, apathy, lack of compassion. I have a feeling I won’t be all that nice a person. I think the word I’m looking for rhymes with ‘itchy’.

My dinner lady who brought me a wonderful lasagna, said her cousin, in her 50s was diagnosed with FTD. In 6 months she was mute. In another 6 months she had passed, at 54. Not much time to tell a story. To ask questions. To go to a website and blog about it. I have been blessed.

I know I have seen miracles in my life. I know because I am living one now.

So far, I am a lucky one. Black days come to everyone, but it does remind me of “The Dark Night of the Soul” a bit.

As for the friend, guess it will have to be me sometimes. “So you have bad days. So, each pimple scares you and makes you wonder if it is ‘a sign’. You’ve had your pity day. Now look to tomorrow. Knock that crap off and live a life of believing all things are possible.”

The link to the Association is www.ftd-picks.org. If you know others who could use some support it is a wonderful site.

Lord. Let me remember these days, these times of babies who are my grandchildren. And keep this image, like the digital frame, running thru my mind and bring me solace in the days ahead.

Permanent link to this article: https://vickisvoice.tv/2009/12/ftd-not-just-bouquet/

November 11, 2009 – ‘Reveille’ Nouveau

4:00 a.m. and the restlessness sets in, indicated by stirring, scratching, stretching. By 4:30 the roosters are exercising their lungs, beginning their morning wake up ritual. “Hello?” replaces the ‘err a-err a-errr!!’. It starts quietly, one by one, by 5:00 they are in full voices. “Hello? Hello?? HELLO!!!” “Here.” “Here!!!” “HERE!!!!”

As a neighbor, I would grimace, covering my head with my pillows and quietly curse all the early morning people around the world. Besides the 8 nighttime visitors who would tiptoe in, and quietly say, ‘shh-h-h don’t wake up, just checking on you’, sleep was scarce enough. The roosters wouldn’t quiet down until 1:00 a.m.

The roosters had their own special style of things. There were clear, acrylic swinging doors on their rooms to let staff know if someone had attempted an unauthorized night or daytime stroll. Their wheelchairs and beds had alarms as well. They would be loud all day, these roosters! They would place their call button in one hand, pushing it repeatedly, with the usual “hello?” and then repeat and repeat and repeat. Jack and John were moved in together, since they were the leaders of the pack, setting off commotion, making staff scurry to attend to their needs, and keep the rest of the wing settled down. The sound of call bells going off is contagious, as you would guess. Like when someone says, “I think I should hit the bathroom before we go.”

One night the two gents somehow got extricated from their beds, and with IV’s crashing behind them, low crawled under the doorway and were apprehended within minutes. Short-lived victory, I thought.

At that moment, I had to grudgingly give them some respect. If I could move at all, I might have joined them. Not knowing how far we’d get or where we’d go, but the need to be home overwhelming us all.

Once they, and now Charlie and others, became people to me, I liked them. During the day they would be wheeled into the hall, on good days they’d move around the corridors. On bad days they slept, looking like they were 100 years old and helpless. I know how it felt. With the prospect of what lies ahead sometimes escaping into the void that sleep brings was the only hope.

Jack’s wife was also there, on the other side with the Alzheimer patients. On good days they shared lunch, sometimes her room, sometimes his. Jack was the flirt of the group, much to my pleasure! In PT and Occupational Therapy I would see them, as we all made weak attempts to have our unruly minds control our limbs. On the days that Jack was there, his wife was right beside him, squeezing a rubber ball between her knees as though it was the only thing that was on her mind. But when his eyes, grin or words suggested something more, she’d give him a rap on his arm, and he’d turn and say “I was just thinking about you, sweetheart”, innocent face betrayed by the grin he wore.

I came to know that John didn’t understand the call button, he thought it was a 2-way radio, so he would say “hello?” and wait for a return response. Not hearing one, he’d press the button, repeating his query, until someone came in.

Their pain was off the charts. The unfairness of nature laying down multiple diseases and distress on already condemned people will always eat away at me. Alzheimer and dementia patients with diabetes, Parkinson’s, cancer… Charlie seemed to have days he could not wake up, other day’s I see him in the hall, smiling a sweet smile at me. “You’re looking perky today,” I’d say in PT. I noticed daily how his recent amputation just above the knee went from raw, to red, and was beginning to look like healthy flesh again. And then there was the day of the prosthesis, and new sneakers. His eyes were dulled.

Another had a long ago amputation, and now was mourning the loss of his ‘good’ leg that had survived the War, and would give no eye contact. At night, in his parked wheelchair, you’d find his new shoe with it. When is enough, enough, Lord?

Louis had a new stroke on top of advanced Parkinson’s. When I’d get a cold glass of water during therapy, his eyes would beg, his left hand would point shakily at me. I rolled over to the bottled water, pouring him a short one. Just as I was going to hand it over, a therapist intercepted it. “He can’t have it! He will aspirate it.”, and she brought him back thick water. His scowl told it all. She tried to help him take a sip, and he kept his lips sealed, turning his head away. With everything he had been dealt, all he craved was a cold glass of water.

Now that I knew them as neighbors, I listened at night to the conversations they would shout out. The night they low crawled out, they were under fire, trying to help each other out of harms way, blood from their pulled IV’s ignored; they were enmeshed in World War II. In fact, all my neighbors across the hall were reliving those traumas they had been able to keep sealed away. But pain or dementia was unleashing this Pandora’s box, best left locked.

On this Veterans Day, I pray for those who are trapped in the nightmares they had so long put behind them. If your parents or grandparents who served in our armed forces are still alive, dialogue with them now. Pray they are never locked in the isolation of their minds, to re-fight the battles alone. Just pray.
 

There was something beyond words, when I eavesdropped on the reuiniting of husband and wife at Heartland Healthcare. Choked me up, and made me see myself in years to come. He called on his 2-way radio, he hollered for help for his comrades. He low crawled into enemy lines, leaving a trail of blood with each exertion. He repeated it over and over and over. And then, on no particular day, he was back and he would smile at me.

There was something beyond words, when I eavesdropped on the reuiniting of husband and wife at Heartland Healthcare. Choked me up, and made me see myself in years to come. He called on his 2-way radio, he hollered for help for his comrades. He low crawled into enemy lines, leaving a trail of blood with each exertion. He repeated it over and over and over. And then, on no particular day, he was back and he would smile at me.

He coped with WW II. He learned to walk with one leg while raising a family, earning a living. He pushed all the nightmares of his war into a place he felt nothing could penetrate. And then, he aged. Diabetes set in, and unceremoniously, with no parade, no Son of War banner in the window. This was his reward.

Permanent link to this article: https://vickisvoice.tv/2009/11/november-11-2009-reveille-nouveau/

Journal: August 19, 2009 – Dancing Alone

I watched Gus (Gustapoo Oakley) beside himself as his only neighbor dog, OZ, went whistling by our window, unhindered by a confarndit leash, with another dog. It took me hours to help him calm down.

Gus and I are a lot alike. Any visit, via the yard, the mail, email or cell is a gift from God. But, at the end of the day, we end up alone. Dying – or being sick – is something people forget about. Close friends whom you did everything with, laughed with; former co-workers, even family forget the fears that creep upon us, unless we bark or call attention to ourselves.

Suddenly, close friends are distant, new friends are afraid, and ultimately we are left on the sidelines, having been a dynamic player until God gave us another task.

Farm Town, FarmVille, YoVille – they take our mind off of dying, off seizurers or unemployment for awhile. But then my computer dies and I realize if it dies so will I. It’s my only window on the world. If I relied on knocks on doors or visits or phone calls they would cease as well.

I took care of many people before they died, and I didn’t get it. I got it with my Mom, to the harm of my children whom I had to ignore to care for her. My friend, who I know would be active in my life at this stage, is caring for his mother who is dancing with death.

But for the most part I dance alone, every day. If I get an email, or a ‘like’ or comment on Facebook, I am delighted, but having no computer for 2 days told me the link to the living is frail at best. If I lose my computer, I will lose all of them.

Today the only phone calls came from debt collectors, save one from my daughter. Couldn’t dying be softer, more dignified?, I ask myself. But I know it is not so any more. I hope President Obama makes good things happen for us, who are going bankrupt trying to find medical care. Who are just dying for a better plan.

Thank you, and blessings,
Vicki

Permanent link to this article: https://vickisvoice.tv/2009/08/journal-august-19-2009-dancing-alone/

Journal: August 15, 2009 – Foggy

Felt a little ‘foggy’ today. A friend had stopped by, and it was an effort to focus on him. I said “I’m sorry but I am seeing you from a distance. Can barely hear you.” Two hours later I was in the middle of something called “Distonia” facial and body spasms, not unlike a seisure but I am fully aware of everything. The extreme pain, the terror as my eyes convulse closing shut so tightly that once it left my eyes bloodshut. My jaw clenches shut and I cannot speak, then my tongue will push through and extend to the most painful lengths, then my lips curl, nostrils close, and thru all of it I cannot speak, cannot move.

With God’s good grace my daughter, husband and grand-son came by, like if on cue. They took one look at me trapped on the couch, and went into their now experienced mode. Beth massaged my facial muscles, while Keith tried to unknot my feet and calves from their spasm, all the while saying ‘breathe, breathe, it’s not as bad as last time. You know you can do this.” And I tried to implore them with my eyes or grunts, but my hands were curling and my body was trembling. They pushed the pills through my lips, and in a moment of reprieve I could swallow, and then it would begin again, like labor pains but with no positive end except to survive.

After a few hours, they helped me into bed, stayed by my side for the next few hours, cool cloth on my head, and we wept. Wept that I had to burden them with this, and that I was burdened with this.

The next days I would not be able to move, save with cane or walker. Today I still have trembling and pain.

I pray for those who pray for us. And offer my gratitude for all the help that is offering itself to me.

It feels like a volcano errupting in the cornfields. Nothing you would expect. Something you expect will kill you.

Help, I'm in here and cannot get out.

Permanent link to this article: https://vickisvoice.tv/2009/08/journal-august-15-2009-foggy/