Jul 17

July 17: Anniversary of a Diagnosis

Jim Coyle

 

Four years ago, July 17, 2009, Vicki Wells Bedard and her daughter Beth were at the doctor’s office to receive results of Vicki’s recent medical tests. On that day, Vicki wrote this and more in her journal:

 

I sat before Dr. Bazoki, with Beth, and we conversed like over coffee. “Your mother has an amazingly brilliant mind,” she said. “It may have kept her alive to this point.” Our jaws slung low. “I believe it is Frontal Temporal Dementia – FTD/Picks.” and she said she would eat her hat, if it wasn’t. We sat there stunned. Beth began to weep. “I was so afraid it was Alzheimers,” she said, quaking. “I was so afraid we were all at risk. Thank you! Oh, Thank You!!” and I watched, not here nor there, as she amazed me with her deep grief being relieved.

But in the weeks and months that followed, Vicki, her children and several friends began to learn more about this “FTD/Picks” disease – and the news was more and more discouraging. It was the start of coming to grips with a “hidden” disease and a journey that has brought unexpected high points and many lows. It’s a solitary journey in many ways, but one strengthened by faith (most days) knowing that God is close even when it seems God is hiding. And there are a few people taking this journey with Vicki. I’m Jim Coyle, one of the people honored and blessed to walk with Vicki these days and years.

Today is the 4th anniversary of Vicki’s FTD diagnosis and she’s napping again as I write this. Vicki naps a lot now. And there have been many other changes in her life the past several years. You and I and others affected by FTD – as persons with FTD, their families, their friends – have been sharing Vicki’s experiences through this blog.

I don’t know whether Vicki will write an “Anniversary Post” today, but she has written two new blog posts on Vicki’s Voice in the past few days.

I’ve known Vicki for over 25 years. But the last 4 years, laughing and crying with Vicki and offering what support I can, have profoundly changed me inside. Vicki and Papa (God) have introduced me to some amazing people on this journey. And shown me anew how precious life is at every stage.

When Vicki was diagnosed 4 years ago, her FTD was already advanced and had caused significant disruption in her life – without knowing what was wrong. In 2009 Vicki was told she had 6 months to 2 years to live.

Today we mark 4 years since her diagnosis. How do we “celebrate” this anniversary? Vicki’s life and health have changed significantly over the last several years. But Vicki is still Vicki – and I Celebrate her!

Thank you, Papa, for every new day for Vicki. And me. Jim

 

Permanent link to this article: https://vickisvoice.tv/2013/07/july-17-anniversary-of-a-diagnosis/

Jul 15

From Counting to Prayer

I count things. How many touches on my iPad. How many items I am harvesting on FarmVille 2. How many houses are ready for collection in Megapolis. I just keep counting.

At first I thought it was my way to keep my brain doing simple math. Like, there is a need for 15 bags of feed for the cows on Hay Day. I have 13. I need 2 more.

And I was/am irritated that each time my fingers touch a screen I get sucked into this counting mantra.

I know, somehow, it’s my disease. But that is little comfort as the ritual keeps expanding.

So, Papa, please take each unnecessary keystroke as a prayer for Jim T, Susan & Cindy, Greg & Jim, Sue & Jim, the kids & the grands, LeRoy, Lynn & Randy, Elizabeth & Patrick, Charlie & David, and all my friends, both real & virtual. Let not a digit be wasted. And may my racing brain find rest in you. Whom I love most. Love, Vicki

Finger Tapping

Permanent link to this article: https://vickisvoice.tv/2013/07/from-counting-to-prayer/

Jul 13

And life goes on…

This week I have been blessed to have my good friend and co-blogger, Jim, here for a visit.

God could not have picked a better time. A few weeks ago we survived my grandson Zack’s wedding along with Greg Friedman, we survived my pup, Beanni, being in an overnight stay.

And life went on. I fully anticipated that our successful trip to the west coast of Michigan would have effects on me. And it did, as expected. 3 weeks of sleep, dullness, waiting for my brain to rewire itself, as – praise God! – it always does. Always a bit worse for wear, but surfacing none-the-the less.

And so it seemed. With few demands on my life or my social skills, just hibernating seemed to be enough.

Until yesterday. Jim made his pilgrimage to see how I was doing, and it appeared pretty much ok. He’s familiar with my morning naps, my right after luch naps. He’s very kewl about such things. Somewhere in that time frame, I had received a call that Rxs were awaiting me.

I came downstairs to say that simple thing. And my mind drew a blank. No, seriously for the first time, a blank. My internal ‘hard drive’ left me years ago. My DVD shortly after that. So to speak these days I rely on my RAM – random access memory – not great but a comfort that of 100 choices as least there I had at least 10 choices of words.

But not that day. It was like I had a simple notepad. And it was blank.

For the very first time since being diagnosed with FTD, I had finally come to the point where there were no words. Nothing.

My brain wanted to tell him I had 2 Rxs at the drug store and I had 2 more to add.

I’m feisty, and when all but grunts came out I pointed to my ipad and he gave it to me. I had barely added ‘I need to add Benedryl and…. one other…’

But before I could finish that short sentence, my body ran head on into a full blown dystonia (uncontrolled body movements). My head wanted to crawl down my spine. My lips wanted leap off my face, taking my tongue with them. My hands curled up like those of the wicked witch of Oz. My eyes wanted to leap out of their sockets. My legs wanted to roll up, as the wicked with of the East’s did when the house landed upon her. My spine wanted my neck to curl down to it’s upper base, and it pulled my head in ways that I didn’t know it could do, but then … my shoulders fought with my head and for hours it was a tug o’war.

Thank God my good friend Jim was here. He shoved pills between my curling lips and clenched teeth, and gave me sips of water.

5 hours later he was at my side, having seen me through 2 more dystonia seizures. I had passed out after the first.

Maybe it’s too dramatic to say he saved my life. But all I know is God had him here at that moment in time. When my brain and voice died.

And I will be grateful forever to have survived with someone at my side.

Papa, thank you for knowing when I would need help and providing someone to sit by, watching what looked like an exorcism, and be there to bring me back, to my reality.

Dying seems so noble. Living despite knowing you are dying brings grace.

Blessings & love, Vicki

 

Butterfly FullCycle 600w2

Permanent link to this article: https://vickisvoice.tv/2013/07/and-life-goes-on/

Jun 02

A Wedding Celebration!

On Friday, a mutual friend and I escorted Vicki to her oldest grandchild Zack Whaley’s wedding – the family’s first wedding of their generation. The weather couldn’t have been better for the ceremony on the shore of Lake Michigan.

Lauren and Zach

Lauren and Zack

The wedding was a wonderful celebration. And it was extra-special for Vicki who didn’t think she’d still be alive to see any of her grandchildren married. Her FTD keeps progressing, making times like attending Zack and Loren’s wedding very, very special blessings!

Zach and Lauren Whaley

Zack & Lauren

Thank you, Papa. And may your life always be Blessed, Lauren and Zack.

Jim Coyle

Permanent link to this article: https://vickisvoice.tv/2013/06/a-wedding-celebration/

May 25

Prepare for a good end of life

Jim Coyle“End of life” is something constantly in mind but not spoken of too much on Vicki’s journey. Most of us don’t like to talk about death, even when it’s clearly going to happen. Since finding out about Vicki’s Frontotemporal Dementia diagnosis almost 4 years ago, I’ve “willed her to live” as long as she can, and have been privileged and blessed to spend quality time with her these past few years. We genuinely treasure one another’s friendship. Neither of us know when life will end – and more than ever before I’m learning to live in and appreciate the present moment.

Vicki’s diagnosis came suddenly, unexpectedly – even though symptoms had appeared much earlier. As is so common with early onset dementia like FTD, the disease was at an advanced stage when she was diagnosed. Since then, through Vicki and then other persons I’ve met on this journey, I’ve seen the impact that planning – and lack of it – can have on quality of a life that seems to be approaching the end.

It’s never too early to “plan” for the unexpected. And it’s never too early to plan for end of life. Video of a short talk by Judy MacDonald Johnston about end of life actions was just posted, and I want to share it with you, hoping it will be helpful:

Here’s a link to the worksheets Judy mentioned in her talk.

In a few days I’m planning to escort Vicki to a celebration with her family. I’m looking forward to it, and whatever else we’ll be doing in the time remaining.

Jim Coyle

Permanent link to this article: https://vickisvoice.tv/2013/05/prepare-for-a-good-end-of-life/