Apr 02

Forbes: ‘It’s Not Me, It’s The Disease’: Making Sense Of A Brain Disorder

Vicki and I recently read an excellent article about one man’s signs and symptoms of FTD – and the need to keep pushing for an accurate diagnosis. Brandt Henderson was 58 years old when the article was written last year. He shares how he’s experiencing FTD and what it means for his family.

The Hendersons

The Hendersons

Brandt’s early signs included apathy and disinhibition. In addition, the article says:

Brandt was also having trouble holding it together in daily life, finding it increasingly difficult to complete basic tasks at home or at work. “I would look back on a week of few accomplishments and vow to do better on Monday, or after vacation, or… But I could not recapture control of my quotidian duties or enthusiasm. It took two years of my insistence plus testing to get an accurate diagnosis.

This article is one of a series about people with FTD, and well worth reading. You’ll find the article online at the Forbes website.

Vicki and Jim

 

Permanent link to this article: https://vickisvoice.tv/2013/04/forbes-its-not-me-its-the-disease-making-sense-of-a-brain-disorder/

Mar 20

So little time …

I write to you, my friends, daily in my heart and mind. Yet I never quite get to a keyboard.

So, in the next few weeks I will try to catch you up on life as seen through my puffy eyes ;o)

Today is the first full day of Spring. And it’s snowing. Unlike prior years I rejoice that somehow the inevitable changing of seasons, the swift passing of days, months and years has by some miracle, been put on pause.

1st day of Spring 2013

 

My life feels like I’m on one of those combo moving walkways / up escalators that has somehow been speeded up, and I can’t find a way to get off. The other lanes around me are going so much slower, some folks are actually running on the walks and skipping steps to get to their destination even more quickly. I just shake my head, recognizing myself, not so long ago.

Whether it’s age or dementia, everything has escalated, making everything too fast, at a time I’m desperate to move slowly, smelling those roses I missed for so many years, to take in the sights and experiences long enough to make a memory.

I go to bed on a Monday and it seems I wake up on Sunday. What has occurred in between is but a blur.

I used to live for weekends, but now I relish the patterns of Monday – Friday. The fact that the Today show is on at 7:00a each day, that there will be a 6:00p news show. It regulates my breathing, my racing mind.

Weekends are chaos where I feel like I’m being tossed into huge voids, with no structure.

Prayer helps the panic, and it runs like background music in my brain. If I pause, I hear my mantra on auto-play.

And in honesty, I fear not the destination of death, but how long will I remember anything, any one. How long will it be when even my family cannot recognize the Vicki who was, with the person in front of them. I fear each time it takes longer and longer to form a word. And I fear each time I just give up, thought lost, frustration or anger replacing any other emotion I had had.

But today I am grateful Papa put Spring on hold – even for a few hours – so I could try to settle into it and embrace the next chapter.

With love & blessings,
Vicki

Permanent link to this article: https://vickisvoice.tv/2013/03/so-little-time/

Mar 03

Speedy Thinking, Speedy Action

FTD is a strange disease in so many ways. In the 3-1/2 years since Vicki was diagnosed, I’ve seen her have ups and downs more extreme than any roller coaster. It can be hard for her to accomplish tasks some days; other times Vicki amazes me with her mental speed and ability.

Ruzzle wordsVicki has been using online games not only for social contact, but as a way to exercise her brain/mind to help slow down the effects of FTD. A couple of weeks ago she introduced me to a fast little iPad/iPhone word game called Ruzzle. It’s simple: just find as many words as you can in 2 minutes by connecting letters shown on the screen.

Of the many rounds we’ve played, until 30 seconds ago I had never won a game. Vicki is sharp, very sharp. That’s great to see! (Though I admit that being repeatedly trounced is a bit humbling.)

During my last visit with Vicki, we set up an Apple TV for a mutual friend – and Vicki was a whiz at adjusting settings, entering accounts, and demonstrating how it all worked. These were the kinds of things she’d done so often while she was still working. But some days – and weeks – it’s hard for Vicki to do even everyday routine tasks.

And so we celebrate the good moments and days, and we share the frustration and sadness of bad times as her FTD affects Vicki’s life – and has an impact on her family and friends as well. One thing’s for certain though: I am blessed to be able to share Vicki’s journey at least in a small way.

Thank you, Papa.
Jim

 

Permanent link to this article: https://vickisvoice.tv/2013/03/speedy-thinking-speedy-action/

Feb 05

Weathering the Storms

This past weekend, Winter storms kept me from visiting Vicki; it’s been too long since my last visit. In a separate blog I’ve started, last month I wrote about something we experienced during my last visit that shows how quickly and unexpectedly things can change. Here, slightly adapted, is what I wrote:

Ice BranchesI thought I’d be sound asleep a few hours ago, resting up to drive home from Michigan to Steubenville in a Winter storm I’ve been expecting for a few days. The trip usually takes me about 7-8 hours on dry roads. I expect it will take me longer today. After a day of rain here, light snow has started falling in the wee hours of the morning. This snow storm is expected.

A few hours ago, though, I was in the midst of a sudden unexpected storm of another kind – one that occurred when Vicki’s health took an unexpected turn for the worse after dinner and we spent some tense time praying and hoping that the medicine would get us through this episode. In time, things calmed down and Vicki was able to get to bed and to sleep. I’m still unwinding from the evening’s events – events that bought a personal storm to us, a very sudden and unexpected storm.

Whether anticipated or not, there are and will be storms of different kinds in our lives. How we respond may be unique to a specific situation. Prayer brought some peace and hope in the midst of tonight’s storm, and I hope my drive in the snow storm will also be peaceful regardless of the weather.

Tonight, praying reminded me we’re not alone and don’t have to tough out the storms on our own. Prayers may not make the immediate problems go away, but they invite God to help share the burden.

Update: I made it safely to my Ohio home. For the most part, the roads weren’t too bad. Traffic was slow in Northeast Ohio though. Vicki is feeling better but tired after Thursday night’s health episode.

We’ve made it through these storms by the grace of God.

Thank you, Papa.
Jim

Permanent link to this article: https://vickisvoice.tv/2013/02/weathering-the-storms/

Jan 05

Free eBook: Living with FTD

Our dear friend Susan Grant, also a person with FTD, has written an eBook with information about living with FTD and practical steps that persons who suspect they might have dementia, or have been diagnosed with the disease, should take to help manage their quality of life. The eBook is free and available on Susan’s SlideShare site. Vicki and I hope you’ll read Susan’s eBook and share the link with family members and others who might benefit from it.

Jim Coyle

Permanent link to this article: https://vickisvoice.tv/2013/01/free-ebook-living-with-ftd/