You cannot tell the content from the title

They no longer come in and couch their findings from your last trail of tests. They don’t say we have bad news and good news. They come in, stoicly dressed in professional whites, and flip past the latest tests, recommendations of the other physicians on your team and, with a hair flick, dismiss them with a sigh. “No, I do not believe you have Lewy Body rather than Picks.” Check. “But,” I stumble out, “Dr. A said it could account for the poor sleep and bad dreams, even the frightening dreams.” “Whatever,” she responds. “BUT I say a bit louder, those nightmares, hallucinations get so bad I can’t sleep for up to 72 hours.” Again, a flick of her hair, a dismissal over her glasses. “No.”

It really is just to define her belief in my stories, or his testing that offers a treatment. “No. We are not going there.” But insomnia for 3 days & nights? “No, that is not where I am going.”

She flips thru the PET scan, the MRI and tells us nothing. Mumbles, “This is not good. Not good at all!!” and excuses herself from our room. There I am with daughters Beth & Andrea, and she removes herself from us to consult. “Not good, not good at all!,” she reports. WHAT THE HELL IS NOT GOOD??!! I think you not only display symptoms of Parkinson’s but ALS, you know ALS?” We nod, “Lou Gehrig’s Disease”. Yes. Swiftly she begins writing a note to schedule yet again one more series of tests.

“Does that mean I will die with my body and muscles and mind deteriorating?” “I don’t know,” she says, “but it would explain your ongoing weakeing of your limbs, breathing harder.” It may be you will just take on the same odd tremble you have from Parkinson’s … anyway I cannot tell you more until we get the tests.”

The tests will be done in 2 weeks. She cannot see me until the end of January.

A year ago, when she told my family about FTD, she said 3 things: Typically you will have 2-8 years to live; contact a hospice; and while you are still congnizant find a home to move to. It took us 2 months to hear back from her after the tests had been taken. Every day that I woke up I said thank you.

Now, right after my 1 year anniversary, she puts me out 6 months to find out what is happening in my brain. Will I live like Lou Gehrig, in a wheelchair, air tube in my throat?

I make this appeal to all physicians of terminal patients: don’t lose precious time. It may be the best we will ever have waiting for you to vaction, take classes. By the time you get back to us, we may no longer recogonize anyone. My IQ drops periliously each year. My cognitive recognition is only 14% from nothing.

It may not be much, but it is all I have. Would it be better for you, AFTD, and all those who study this disease/dementia to just have us go quietly into that good night, than face us, helpless and without hope?

I am in the autumn of my life. I am resolved I won’t see spring. And you are largely responsible for that attitude.

I hope you find peace in the crushing of hope you leave behind each one of our visits…

Papa, Papa… I just don’t know any more.

Butterfly FullCycle 600w2

Permanent link to this article: https://vickisvoice.tv/2010/09/you-cannot-tell-the-content-from-the-title/

Seasons and Life

Jim CoyleAs 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.

This bud's for you

Spring leads to the warmth of Summer when budding flowers open to celebrate life.

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.

Winter branches, dormant, fleetingly encased by a passing storm.


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.

Leaves are most colorful in the Fall!

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.

Permanent link to this article: https://vickisvoice.tv/2010/09/seasons-and-life/

Adding another blog to a WordPress site

Back in February I added a “Jim’s Blog” page to Vicki’s Voice initially to answer some questions people had about setting up a blog. I didn’t want to interrupt the flow of Vicki’s story and writing with general computer talk, so I added the separate page. If you read Jim’s Blog, you’ll see that my new posts have been relatively infrequent, but have included thoughts and links not related to computers but connected to dementia-related material I’ve come across.

Sure I can remember how I set this up in February. Just give me a minute...How about a few more minutes?

A couple of days ago I received an e-mail from another WordPress blogger (WordPress is the software we use for our sites) asking how I set up this second blog page on Vicki’s Voice since he’d also like to write and publish posts about a different topic and nature than his main one. So here I am trying to remember what I did on this site way back in February (when it was cold and snowy).

“Jim’s Blog” is not exactly a separate blog, but rather a “Page” which shows any post I add to Vicki’s Voice for which I select the “Jim’s Blog” Category when I write the post. Right now, Vicki and I choose from about 5 different Categories we’ve set up.

Setting up the Jim’s Blog Page was relatively straightforward. After logging in to the blog on WordPress, on the Dashboard I selected Pages > Add New. After giving the page a Title, looked at “Page Attributes” on the right hand column and kept (no parent) as the Parent option. I Published the new page and it appeared on the top navigation bar of Vicki’s Voice.

OK. This is as far as I can go now. What I haven’t been able to find is how I set this up the Jim’s Blog Category to post on the “Jim’s Blog” page instead of the main blog. I’ll keep looking and add to this post when I find out, or when someone posts a solution in the Comments to this post. And of course there are likely to be more elegant solutions people are using. We’ll see what response we get.

Jim

Permanent link to this article: https://vickisvoice.tv/2010/08/adding-another-blog-to-a-wordpress-site/

Journal 8-8-2010

Today is Sunday.

I thought it was Monday. I believed it so much I believed the date/time stamp was messed up on my laptop. So much so that I rebooted my satellite dish, downloaded new programming and it was only when the tech said, laughingly, “It’s Sunday, Ms Bedderd. Nothing is broken. Happens to us all.”

But I still hope it’s Monday. I’m still somewhat confused how I lost a day in my brain, so thoroughly that I would have argued with her, but the evidence supported her theory that it is Sunday.

Yesterday, browsing over my FB Newsfeed, a name of person caught my eye. One of those charismatic religious leaders. It was a link posted by a generous, devoted Catholic. And I blew up, and wrote a wretched note about the whole thing. And something hit me. I wrote her, removed my inappropriate remarks, she in turn removed her defense. And then she wrote me a note, forgiving me.

So, although in my heart it’s Monday, I will accept it is Sunday. The Lord’s day. Let us be glad and rejoice…

Papa, are you there?? It’s me, Vicki

postman-butterfly1

Photo by Bruce Bane.

Permanent link to this article: https://vickisvoice.tv/2010/08/journal-8-8-2010/

News from our friend, Bruce Bane

Bruce Bane is kind enough to let me share his thoughts from his own blog, Living With Dementia. We have a small group of us with FTD that apparently don’t know we aren’t supposed to write or speak, or be creative. Here’s some beautiful samples of seeing the world through Bruce’s eyes. Enjoy.

Fair Photography Results

Posted July 27, 2010

Filed under: Reflections |

I went to the fair today and found out that of the 15 pictures I entered 4 won 1st place and 11 won 2nd place. I’m very happy about this. It feels good to be able to do something that is on par with people who don’t have dementia. The first places photos are below and you can see both them and the second place photos on my photo album page.

postman-butterfly1 fair-2010-cello

These are just two samples of his amazing work.

Now here’s his blog about how he came to be there:

I’m doing something this Saturday that I’ve wanted to do for several years – I’m entering some of my photographs in the county fair. It took the encouragement and help of the nurses who work with me, but in the end it’s my project and I feel good about it. Like I said, I’ve wanted to do this for years, but kept putting it off thinking there would always be time. But dementia has made me realize that isn’t true.

I’ve always enjoyed photography. And I’m lucky I can still take pictures because there are other things I can’t do anymore, things I should have enjoyed more when I was able, things I would do if I could. These are things that are lost to me because of dementia. They make up a kind of “could ‘a, would ‘a, should ‘a” list; things I could ‘a, would ‘a, should ‘a done if I’d have known what life had in store for me. Instead, I took my life for granted. And now I know I need to let go of the things on that list, but it’s hard to do. So it’s good to have things like photography, painting and writing that I can hang on to. Being able to do these things help to take away some of the sadness of the “could ‘a, would ‘a, should ‘a” list.

So wish me luck. I can’t deny that I would like to win some award. But even if I don’t, it’s been a fun project and I’ve gotten a lot of affirmation from the people who have helped me. I will post my entries on the photo album page of this blog and on my Facebook page. And if I do win anything, I’ll let you know.

Congratulations, Bruce!! You inspire us, your words are our own, except we can’t find them as beautifully as you can. Love & blessings, Vicki

{{{{{Bruce}}}}}

Permanent link to this article: https://vickisvoice.tv/2010/07/news-from-our-friend-bruce-bane/