Vicki's Voice

Archive for the ‘Other Thoughts’ Category

As Vicki Wells Bedard’s partner with Vicki’s Voice, I usually keep my posts in another section of the site (“Jim’s Blog”), and more often than not those occasional posts are about blogging software and techniques. This week, though, as cooling weather in the Midwest signals the upcoming change in seasons, I’ve been thinking about seasons and how they Affect – and Reflect – our lives. Fall, especially, is a reflective season, particularly for persons affected by terminal diseases that are bringing death closer than they’d expected – not only the sufferers, but their caregivers, family and close friends. All are profoundly and permanently affected by the disease.

First on Facebook and then here on Vicki’s Voice, Vicki Wells Bedard has been writing and will continue to write when she can about her experiences in life and what it’s like to live with terminal dementia. Although diagnosed with Frontotemporal Dementia (FTD) in the summer of 2009, Vicki showed the symptoms of this disease for several years before that. As with so many people, testing and diagnosis didn’t take place until the disease was quite advanced and her quality of life had been severely affected. Vicki, a very successful communications professional, was struck down in the prime of her professional life. FTD is a type of dementia second only to Alzheimer’s Disease in the number of people it affects. But unlike Alzheimer’s which typically strikes older persons, FTD most often strikes persons in their 40s and 50s (with many cases of people in their 20s and 30s) – the “Summer” of their lives.

I grew up in Michigan and have now lived in Ohio for 18 years. But for 12 years in my 20s and 30s, I lived in Florida. Months of beautiful weather every year, but no dramatic change in seasons like I’d grown up with. I’ve been glad to be back up North (although I sure miss Florida around February every year).

For me, Spring is a wonderful season. Temperatures are warming up, the seemingly endless gray skies of Michigan and Ohio winters give way to some bright sunny days. After teasing us with a few early blossoms, flowers start to bloom. Bare tree branches put on their covering of green leaves and the brown grass morphs into a soft green blanket. Spring is a hopeful season, one of refreshment, renewal and anticipation of the warmth and life of Summer.

Fall is another season of transition, and along with Spring one of my two favorites, but it’s a “mixed bag.” On one hand, I enjoy the cooler weather and the brilliant colors of autumn leaves. I have fond memories of going to the cider mill in Franklin, Michigan every Fall as a child, feasting on fresh apple cider and just-made donuts.

But Fall eventually brings bare trees, dormant grass, and ushers in the seemingly endless gray Winter of the Midwest.

To be sure, there are great high spots in every season, times and events to be celebrated. But the cycle of seasons is similar to the cycle of our lives here on earth – but our lives have just one cycle.

All forms of dementia are tragic diseases for the person who suffers and for their family and friends. But it’s especially tragic when large numbers of people like Vicki and other persons I’ve met with FTD are struck in the Summer of their lives – times when they’re experiencing real success in their jobs, times when so many have children at home they’re raising and enjoying and anticipating great futures together. Dementia is cruel at any age, but especially so when it strikes people in the prime of their lives.

As the number of persons diagnosed with early types of dementia continues to grow – and millions more exhibit early signs of dementia – it’s become more crucial than ever to educate members of the medical community and the overall population about the need to recognize, acknowledge and investigate early signs of dementia. The numbers of people affected will keep growing significantly. If diagnosed early, a person can experience a greatly improved quality of life, benefiting themselves, their families and their friends. Right now there’s not a cure for dementia, but having a better life during one’s final years is priceless. And we hope and pray that one day there will be a cure for future generations.

In addition to educating about the medical and psychological importance of early diagnosis, the social stigma attached to dementia must be eliminated. One way that will help is to recognize these are diseases. In fact, there’s a movement underway to rename FTD Frontotemporal Disease instead of dementia – for it is a disease. Instead of feeling isolated and outcast, the victims of these diseases need participation in family life and society to the fullest extent possible. It’s a matter of moral and social justice, and the most loving behavior one can show to a family member or friend.

As the cooler weather stays in her hometown and the breath of Fall become stronger, what is Vicki thinking, feeling, experiencing? How much effect does the season of the year have, if any? During the past year, Vicki’s life has been a physical and emotional roller coaster. She’s already lived better than her doctor said she would when giving the diagnosis of FTD. I’ve seen Vicki exhausted and discouraged, which she’s sometimes written about during the last year and a half. And I’ve also seen Vicki at the top of her “game,” sharing ideas and plans as well as she ever has at meetings about a special project a couple of weeks ago. Vicki has given us a precious gift by writing candidly about her highs and lows, usually with a smile.

Every day can be dramatically different for Vicki and for the other people I know with FTD. I hope that my care, my concern, and my actions will help Vicki and others live each day as best as possible. That’s the gift we can give to those we know and love.

Papa, it’s Jim.

Bad days come in all sizes and shapes, and sometimes you’ve done something so amazingly bad that even though you are the only one in the world who knows what you just did, your face turns scarlet! Yes, you can embarrass you. It’s a fact of life.

One would think – being safely withdrawn from the business world – I’d be pretty safe. And I usually am. Hardly use email; of course Facebook scares the dickens out of my kids. So that’s why I created a Flair! button that says “I embarrass my offspring” with the FB logo. 26,000 people are using that one.

But mostly I’m harmless. But a couple weeks ago, always with best intentions, with a project near and dear to my heart, I opened an email in a different manner, and unbeknowing I sent my comments – about Mel Gibson maybe having FTD of all things – to a list of national leaders. Yup. That was me, and I wanted to pull the covers over my head and just go away.

Who hasn’t said or posted something that we wish we could have taken back? Words at the water cooler, trying to be cool. Or even just listened to something you wished you had just walked away from.

Sometimes, like a day ‘power broking’ – and yes, I have no idea what that means – I screwed up on something (well heck that was expected, at least 4x a day) and just as I was going to berate myself, up popped a new email proposal. I looked at the recipients, looked at the subject, confused I began to read. And it was the outline of our competition listing how they could take over the company I was working with. OMG! To heck with the message, and omg for the sender. And I prayed for them. And I never brought attention to it. It was just a bad day.

If the Apostle’s Creed would allow addendums, where it reads “one, holy, catholic & apostolic” I’d like to add “and by the way everyone messes up.” But you cannot. I’d also add “in conflict” just because it rounds things out, don’t you think?

But on really bad, no-good days, I remember a trip with Sr. Virginia & Fr. Jim as we headed towards Conway (MI) and I was relating – yet again – aother PR faux pas and Jim slowed down on 32 as we entered Petoskey. “Vicki,” he said. “Ever stay at that Holiday Inn?” Well of course we all had; it was the first big commercial hotel, boasting “49.99 a night with a million dollar view!!!”

“See anything odd about it?”

Well yes, all the fancy schmanzy rooms with a balcony faced the parking lot, and on the Bay side it was plain windows, no sliders and uglier furniture (those were the rooms I could afford at the $49.99 a nite.)

So he told me this true story. Holiday Inn had paid more for that location than other exotic locations from around the world. They argued with the Chamber of Commerce. They argued and placated the neighbors. They promised an elegant setting proper for the history of Petoskey, Michigan, and its historic Bayshore area.

Obviously, they won all the arguments. And the ground was broken for this amazing, historical moment of letting Big Commerce into a quiet Northern Michigan conclave.

On the day of the dedication, with all the headquarters honchos there to cut the ribbon, someone asked a question, not too dissimilar to another one by Aesop, 1000s of years ago, about the King and his wardrobe. Jim said the president heard the comment that was already in his head, and asked “Why are all the deluxe rooms with balconcies facing the parking lot and not the view??”

The architect, completely flustered, looked at what he created, looked beyond it to Little Traverse Bay, began blushing, and turned the architechural drawing totally around. He looked at the prints – spot on. The building was amazing in its day. One thing was missing.

Because he never looked up to the Bay, only at his plans that were perfect, he never noticed – not once – that they were upside down.

So, you think you’ve had a bad day? Come to Petoskey and smile …

Love, Vicki

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Here’s the perfect song for you:

Most of the posts here on the main page of Vicki’s Voice are written by Vicki herself. Once in a while, though, I jump in to share something about Vicki that helps tell her story, helping you know Vicki better. As Vicki and I have each written earlier, the main reason for starting this blog is to help connect people, especially persons affected by dementia and other neurological diseases, and support one another in what can be incredibly difficult times. Through her writing, comments and other interaction with people through Vicki’s Voice and Facebook, Vicki shares herself with others, and with generous doses of wit, honesty and wisdom, helps many of us reflect on our own lives and in some cases open interior doors that may have been closed for a very long time.

On Facebook yesterday, in the midst of several days in which she hasn’t been able to speak, Vicki asked for prayers that her voice would return – even for 15 minutes – so she could record an important acceptance speech in case she can’t speak aloud at an upcoming conference. Since reading that request, many of us have been praying for Vicki’s audible voice to return and leaving comments to let Vicki know we were praying for her. Among those comments is one from a Facebook friend, Hope Grace, that expresses so well what Vicki is doing for other people through her life and her communication. I feel it’s important for Vicki, for me, and for all of us to read this. I doubt that Vicki would post this here, so I’m glad I have a “key” to the front door and can share it with you, with, of course, Hope Grace’s permission:

Some of my random thoughts about Vicki and her voice:

Vicki teaches me. She may find that traditional English language words fail from time to time, but her spirit voice shouts – perhaps her version of her “inside voice” – chock full of all the loudness, the gregariousness, the excitement of her outside voice, and we train the ears of our soul to hear it. What’s in Vicki’s spirit voice? Right now…perhaps some fear of the future. Fear that those entrusted with her care will not be authentic, will not speak the truth, will put on a fabricated show with certain enhancements, as if to get the ratings up. Fear that no one will hear. Fear that only the perception of the words of the others speaking on her behalf will now become the persona of Vicki rather than Vicki’s own voice speaking on her own behalf. Fear that her lived truth will not be heard. Fear that this creative, compassionate, fully-alive, brilliant, animated, energetic, accomplished woman who has used her written and spoken voice to transform and to cause change will be voiceless. Never. Perhaps simply shifting from outside voice to inside voice when she needs to. Voiceless? Never.

Vicki (and I only know of her through Facebook) is a leaper…free falling…leaping, risking, being vulnerable, saying YES, taking her own private, creative thoughts and ideas and leaping out into the unknown of sharing them with others. She never knows what their response will be, but this courageous woman always takes the leap, nonetheless, knowing that it is better to leap and risk and trust. Vicki is NEVER lukewarm. She stands for something. Even if she has fears, she risks. She connects. She shares. And oh, look at the work she has done. Looking to the years ahead now…one day unable to vocalize with her outside voice, maybe. Gasp. One day unable to type and express her outside voice through print, maybe. Gasp. One day unable to make a sandwich, even one with atypical fixins, maybe. Gasp. Going between outside and inside voice – it’s okay, it’s okay.

“In the arms of Papa” she writes frequently. Inside voice or outside voice – she speaks authentically. She speaks the truth. Always the truth. Does she actually “see” the arms of Papa the way she can see a six foot banana? I don’t know for sure, but probably not. But are the arms of Papa there? I learn from Vicki’s faith. Vicki spoke it. Vicki lives it. Vicki trusts it. Vicki goes forth and doesn’t wuss out. Despite any secret fears, Vicki leaps. Lookout baby, here she comes. It’s a free fall, but she leaps. She trusts. Vicki teaches me that leaping is where it’s at. And so I study and observe carefully, hoping to do as Vicki does. One day, if she finds she is only able to speak with her inside voice, I believe she will fully leap into the arms of her Papa with a big bright smile, a twinkly wink, a compassionate, playful, authentically encouraging “Neener, neener, neener” – looking back and nudging along those of us who have yet to leap.

Thank you, thank you, thank you, Vicki.

Hope Grace

And our deepest thanks to you, Hope Grace, for putting into words what so many of us feel and experience. God bless you.

Jim Coyle

This week – a new friend – Susan Grant, also an FTD sufferer, is having a wish come true. Despite the roller coaster of her disease, she and her caregiver will be holding the opening, several years in the making, of their documentary, “Planning for Hope”. Congratulations, Susan and Cindy!!! May God bless you abundantly!! You give us hope.

Here is a trailer for the film:

You can find out more information about the film at ftdtheotherdementia.com.

Love, Vicki

First, let me introduce you to a radio program called Radiolab, produced by WNYC Public Radio in New York City. For well over 50 years, I’ve been fascinated by radio production and the variety of ways to bring stories to life through sound. Radiolab is my favorite radio program, and I usually listen to it at their website or as a podcast I download. I’ll put a link at the end of this post.

Today Radiolab released their latest podcast, shorter than the full-length program. It’s titled “Vanishing Words” and is a fascinating look at words from two different angles: Agatha Christie’s novels, and observations from a study of almost 700 elderly nuns. In both examples, words serve as a window into aging brains…a window that may someday help pinpoint very early warning signs for Alzheimer’s disease and dementia.

You can listen to the podcast by pressing the play Arrow below, then later go to the Radiolab website for more information if you’d like. Wherever you listen, I think you’ll find it’s worth it.

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We’d love to read about your reactions and hope you’ll leave a Comment here. And you can click on the link to visit the Radiolab website at WNYC Public Radio.

Jim Coyle

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Photo by: Laineys Repertoire/flickrCC

 

Richard Taylor is one of the best-known authors and speakers about dementia from a personal perspective. Richard was diagnosed with dementia, probably of the Alzheimer’s type, when he was 58 years old. What he has written and speaks about relates to persons with all types of dementia, not just Alzheimer’s Disease. Through his book Alzheimer’s from the Inside Out, his Blog, and speaking opportunities, he has been working for almost a decade to change the stereotypes and stigmas of dementia of all types.

This video highlights Richard sharing a few very important aspects of life with dementia:

Last August, Richard Taylor was interviewed for a Leaders in Eldercare audio podcast by Ryan Malone. I’ve found this interview to be very helpful for people dealing with family members or friends with dementia and for people wanting to understand the effects of these diseases. Be sure to check out the podcast website. Meanwhile, I encourage you to listen to the conversation by pressing the arrow on the player below:

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Jim Coyle

 

Jim is on the road, but he shared this quote with me on Facebook, which I shared there as well, too. But I know he’d want you to have a copy. In his note to me he said “I had you [we FTD's] in mind.”

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The Virtue of Flexibility

“Trees look strong compared with the wild reeds in the field. But when the storm comes the trees are uprooted, whereas the wild reeds, while moved back and forth by the wind, remain rooted and are standing up again when the storm has calmed down.

“Flexibility is a great virtue. When we cling to our own positions and are not willing to let our hearts be moved back and forth a little by the ideas or actions of others, we may easily be broken. Being like wild reeds does not mean being wishy-washy. It means moving a little with the winds of the time while remaining solidly anchored in the ground. A humorless, intense, opinionated rigidity about current issues might cause these issues to break our spirits and make us bitter people. Let’s be flexible while being deeply rooted. “

-Henri Nouwen

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