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The Problem with Alzheimer's Disease

Originally posted to Her Final Year on August 24, 2011 by John
Reprinted with permission, with a few small adjustments.

Alzheimer's Disease isn't fickle. It doesn't target just one demographic: it doesn't care how well you're doing financially, or if you're popular, or what color you paint your toe nails or if you're hairy or hairless. Anyone may find themselves either a victim or a potential care-giver.1

Ronald Reagan had Alzheimer's Disease; now WaPo is reporting that Pat Summitt has been diagnosed with early-onset dementia:2

Three months ago, Summitt, 59, the blaze-eyed, clench-fisted University of Tennessee women’s basketball coach who has won more games than any other college coach ever, men’s or women’s, visited the Mayo Clinic in Rochester, Minn. seeking an explanation for a troubling series of memory lapses over the past year. A woman who was always highly organized had to ask repeatedly what time a team meeting was scheduled for. "She lost her keys three times a day instead of once," her son Tyler says. She was late to practice. On occasion, she simply stayed in bed.

There are tests which help doctors determine the type - and stage - of dementia. For some folks, these tests make sense. For others, they may be misleading. Such was the case with Summitt, according to her son. Per the WaPo piece:

Next, she was asked, “Do you know today’s date?” She has never known the date. She deals with dates strictly on a need to know basis. Frequently, she doesn’t even known the name of her hotel — there have been so many of them, and they all look the same, and they are all called Radisson or Clarion or Hyatt or Hilton.

This has always been Summitt. She has always mislaid her car keys and forgotten where she put her cellphone. She has always juggled too many responsibilities, and obligations. For this reason, the numbers from her test results are somewhat misleading, according to her son.

When I was the primary care-giver for my mother-in-law, I also noted that the tests (sometimes as simple as asking someone if they remembered a person's name only a few minutes after being introduced) were not fool-proof:3

Part and parcel with spending more time with Georgia by her on the occasional consulting appointment and running errands with her was that we established a better understanding of each other. One of the perks of this was helping her cope with her memory and mental lapses. I encouraged Georgia with clues and triggers to help her remember things like names. The neurologist's name -- "Dr. Penny" -- was one example. I placed a penny in Georgia's hand while we waited for him, after the second time she asked me his name. A minute or so later, I asked her the doctor's name. She looked at the penny in her hand and smiled. "Dr. Penny," she replied with a grin. When he entered, she didn't need to look at her hand. In fact, I think she'd pocketed the penny by that point. But she did remember his name.

This was one of those doubled-edged sword things. The blade cuts both ways -- my helpful "hint" to Georgia to help her alleviate the stress of not remembering the doctor's name and help her feel more at ease likely factored into the doctor's evaluation, as from his perspective Georgia was able to recall his name w/o assistance.

I didn't really think of that at the time.

Continuation of this thought... Folks suffering from dementia, particularly in the early stages, do a lot to try and compensate as well as hide their affliction. Caregivers, in spite of the best of intentions, may be enabling a form of denial in some ways -- that was the thought I was trying to articulate above, wondering if my assistance to Georgia to help her with the doctor's name was just one way of potentially helping her hide her symptoms, even though it was also a positive reinforcement of my role / relationship with her as caregiver/protector/assistant etc.

Sometimes, in our efforts to be helpful, we may thwart some of the simpler yet rudimentary tests that doctors use to establish the parameters necessary for a diagnosis.

It's one of the additionally frustrating things about finding oneself in a care-giving role: can your efforts to help the loved one also impact - possibly negatively - the ability of doctors to develop an accurate medical picture in order to make a proper diagnosis?

A crucial factor that goes hand-in-hand with this is the issue of communication. Not just between doctors and care-givers, but also doctors and patients, patients and care-givers, and all of the preceding in various combinations as they need to communicate with family, friends, legal assistance and social workers or state & federal employees. Make the jump»

Book Marketing: Participation 101

Crossposted from Daily Kos.

As many of you know, Shadan7 and I co-authored a book called Her Final Year: A Care-Giving Memoir along with our wives. It contained many excerpts and elements of the care-giving process as we'd related it here in addition to a great deal more information taken from various & sundry other sources (emails to family, online LiveJournal posts, other blog posts and personal journal entries). After writing the book, we then had to figure out how to get it to market: the traditional way (find an agent or publisher via query letter) or the "new" traditional way (self-publishing, utilizing some form of e-book and/or POD publisher). Here's a brief overview of what we have done to date, the decision process involved and our current status.

In addition, we've also got a way for those of you who'd like to get a free copy of the book to take a shot at winning a copy for yourself and a friend.

Follow me over the squiggly thing for more information. Make the jump»

CareGiving Kos: Options for Care-Givers

Crossposted from the Daily Kos group CareGiving Kos.

As the population grows, the economy constricts and services face more serious challenges by the day, some of the options currently available to care-givers may change - some will fade as funding dollars for service programs dwindle, while other opportunities may arise to fill voids or address particularly troublesome unmet needs.1 It's often difficult to keep abreast of developments - navigating the state and federal options is usually a good starting point, but state options vary from state to state and region to region. Federal options aren't always easy to understand, or are limited.

One way we can improve this is to offer feedback and information about opportunities for help and support in our region, and provide feedback on those services and how they worked (or not) for our own care-giving needs. In some instances, we might note services and options that we weren't aware of but which are available - and anyone who has actually tried those services can offer their perspectives on them.

This particular diary is not meant to be a substantive start to that process, but an exploratory one: I'll touch on a couple of programs of national and state/regional scope, provide some information and commentary, and ask for any feedback or additional information. Ideally, folks will add other elements in comments (local/regional/state/federal services, etc.) and include what they know of them, and we'll be able to create a more substantive plan for a follow-up diary (or diaries). Ready?

Ok - jump the squiggle, and let's begin.

  Make the jump»

Elementary Geometry: The Food Pyramid buried in favor of "MyPlate"

On Thursday, June 3, the U.S. Department of Agriculture unveiled its new symbol of balanced nutrition, called MyPlate. It replaced the outdated Food Pyramid that has been with us in one form or another since 1992. From a column by William Neuman, published on the New York Times website on May 27 - before the official unveiling - we can get an idea of some of the reasoning behind the new imagery:

It consists of four colored sections, for fruits, vegetables, grains and protein, according to several people who have been briefed on the change. Beside the plate is a smaller circle for dairy, suggesting a glass of low-fat milk or perhaps a yogurt cup.

Few nutritionists will mourn the passing of the pyramid, which, while instantly recognized by millions of American school kids, parents and consumers, was derided by nutritionists as too confusing and deeply flawed because it did not distinguish clearly between healthy foods like whole grains and fish and less healthy choices like white bread and bacon.

In a piece by Dallas Duncan of The Gainesville Times entitled Clean dinner plate replaces food pyramid: Experts weigh in on government's new dietary guidelines, published a day following the official unveiling, we learn a few more things about MyPlate:

The image advises people to eat smaller portions, reduce sodium intake, drink water and low-fat or fat-free milk and increase intake of fruits, vegetables and whole grains.

"This is a lot more user-friendly," Hall County Schools Nutrition Coordinator Jennifer Teems said. "It's easy for kids to look at and say, ‘This is what should be on my plate.'"

Teems said the only thing she would change on MyPlate was to feature pictures of food.

"It is not perfect of course, because it doesn't handle mixed foods, but it is better than the pyramid," Crawley said. "I wish it gave a size for the plate. Most dinner plates are huge now and may result in overeating."

Everyone's tastes are different, so the new image may or may not be palatable to some, but most appear to agree that it's a definite improvement over the Food Pyramid...and, in particular, the most recent incarnation of the pyramid, which was called MyPyramid.

You can go check out the new symbol and nutrition guidelines at ChooseMyPlate.gov.

 

Timothy Ray Brown - first man in history to be cured of AIDS?

Just a quick note: according to a piece by Stephen C. Webster on Raw Replay, Timothy Ray Brown may be the first patient in history to be cured of AIDS.

There's a video at the link, from the May 17th broadcast of CBS San Francisco.

The cure was apparently effected through a bone marrow transplant from a donor who was genetically immune to HIV - a rare trait.

Doctors aren't sure how the bone marrow transplant itself triggered the body's elimination of the virus proper.

 

Live Action On Abortion - Real Facts, Dissecting the Anti-Planned Parenthood Video

This is an excellent reality-based video by a young Romanian videographer named Christina Rad. Hat-tip to Moby over in the Opinions Unrestrained forum at DelphiForums for posting where I'd find it, and to Stephen at DelphiForums for his initial post on it.

From Moby's post:

Cristina Rad is a young Romanian woman who has independently read the Bible, the Koran and other books on religion. As a result, she became an agnostic, then took the final step to atheism. She's been releasing some pretty intelligent videos discussing various related subjects for about three years. She's got a sense of humor and has fun with her filming and editing skills, sometimes playing multiple characters, dancing, etc.

Thanks to Stephen over at Here Is the News for posting about her.

We need more people to wake up and see through the Right's bullsh!t. Watching more of Christina Rad would be a helpful way to start...as well as a very entertaining and educational one.

Watch and learn...and pass it on:

Cool, eh? -- Yeah, I think so too. Totally Rad, in fact. ;)

 

Sunday Morning Open Thread: Mother's Day And Selected Other Items, 'Is We Learning Yet' Edition

Today is Mother's Day in the U.S. and mothers in Vermont may have additional reason to celebrate - three days ago, Vermont passed the first Universal Health Care bill in the U.S. Here's a blurb from the HuffPo piece written by Anja Rudiger yesterday about it:

On May 5 the Vermont House followed the Senate in passing the final version of a health reform bill that creates a path for a universal, publicly financed health care system in Vermont. Governor Peter Shumlin has confirmed he will sign the bill into law.

This makes Vermont the first state in the country to move toward a universal health care system that will provide health care as a public good for everyone. Legislators and advocates alike have compared Vermont's role to that of the Canadian province of Saskatchewan, which half a century ago spearheaded the establishment of universal health care in Canada.

Nicely done, Vermont.

In other news, two imams on their way to an anti-Islamophobia conference1 were tossed off the flight by the pilot, who had gone so far as to turn the plane - which was taxiing down the runway after leaving the gate - back to the gate. Authorities are investigating.

Insofar as new words and definitions go, you can add Teach-i-cide to the list. Kudos belong to Shakespeare's Sister of Daily Kos. Here's the definition as excerpted from the nub of her gist in the diary:

Simply put, in all areas of teaching, over-emphasis on "drill and kill" activities to build vocabulary recognition or even skills - some of which cannot be directly taught - is removing the emphasis from students actually learning, and removing the power from teachers to actually teach. Teachers are more and more forced into the "bubble box" where we have to teach to the test - our district's standards are prioritized in terms of what the state test emphasizes. In many cases, those standards are not what our students need, and therefore we, as teachers, are not meeting their needs.

I'll leave you with this final quote, amalgamated from Gallagher and Schmoker:

As Gallagher (2009) writes, "a terrible price is paid" when the exigencies of testing supersede authentic literacy [or any true learning] activities (p.26). Teaching to the test, which so many continue to do, is both unethical and patently counterproductive.

It would be a tragedy if you didn't go read the whole thing - it's well worth it.

And on that final note, we'll leave you with this parting thought about teaching:

"Teaching is more than imparting knowledge; it is inspiring change. Learning is more than absorbing facts; it is acquiring understanding."

      - William Arthur Ward

Namaste, and Happy Mother's Day.

 

Only footnotes below the fold.

 

  Make the jump»

The High Costs of Caring

This isn't a commentary or diary so much as a kind of long comment that I thought contained a reference worth bringing to the attention of others. From a recent Daily Kos diary,1 the following:

Psychology/Behavior

University of Michigan: Study shows real social costs of caring for cognitively impaired elders
March 22, 2011

ANN ARBOR, Mich.—The real social costs of cognitive impairments among the elderly are being greatly underestimated without counting care given to older Americans who have not yet reached the diagnostic threshold for dementia.

That is the central finding of a University of Michigan study published in the current issue of the Journal of the American Geriatrics Society. The study is based on data from 169 primary family caregivers of individuals with dementia or cognitive impairment. The sample is part of the Aging, Demographics and Memory study, which examined a nationally representative sample of men and women age 70 and older as a supplement to the U-M Health and Retirement Study, funded primarily by the National Institute on Aging.

"We were surprised to learn how much time family members spend caring for loved ones who have some cognitive impairment, but whose impairments are not severe enough to be classified as dementia," said Gwenith Fisher, a psychologist at the U-M Institute for Social Research (ISR). "These caregivers are dealing with many of the burdens of caring for an older, cognitively impaired family member, but they may not be eligible for much of the help available unless the diagnosis is dementia."

Having lived through this,2 it's good to see that studies are now focusing on the overall costs. The takeaway line that caught my attention?

"These caregivers are dealing with many of the burdens of caring for an older, cognitively impaired family member, but they may not be eligible for much of the help available unless the diagnosis is dementia."

Yes. "Unless" and "Until" - and sometimes even afterward.

The costs of caring can be significant - but, that's part and parcel of what it really means to care, isn't it?3

I don't regret it.

 

Footnote references over the fold.

  Make the jump»

Her Final Year: A Memoir

It's now official. My co-author Shadan7 and I, along with our wives, have decided to self-publish our book about our experiences caring for our respective mothers-in-law as they slowly succumbed to Alzheimer's Disease.

The book's title is Her Final Year. Why that title? Because it fits - in several ways. Particularly if you regard the "year" as a metaphor. I'll excerpt from the link above, as Shadan7's explanation for the metaphor sums it up nicely:

The idea for the book – the metaphor, if you will – is that you can consider Alzheimer's progression and impact on a life as something of a whole. Just as the seasons progress, just as the days and weeks and months follow one after another in a fairly seamless manner through the course of a year, so does the disease advance. January starts with hope for a new year, in December you're looking back at how things actually unfolded. You can predict, in general terms, what the weather will be like from month to month – but you can still have a glorious sunny day the week of Christmas, just as you can have a grim and cold weekend in September.

Likewise, someone suffering from dementia can have good days and bad days, even as the general trend of the disease moves relentlessly on to a known conclusion. Furthermore, in no two people will the disease progress in exactly the same way.

Therefore, in order to make our book the most useful to other people, we've arranged the "months" according to the general progression of the disease, and then we've placed individual entries – drawn from email correspondence, blog posts and Live Journal entries – into the "month" where it most seems to fit. There is a general tendency for those entries to follow an actual chronological progression, but it happens that sometimes they don't match up that way. In addition, things are time-compressed: the actual experiences we’re relating happened over roughly four years, but in order to make the most sense of them they've been fit into this one-year framework.

Hence, Her Final Year. Incidentally, the last third or so of the book is a whole other section titled His First Year, dealing with the impact of the caregiving and subsequent recovery from it.

  Make the jump»

A Real Public Option In Connecticut?

So it would seem.

The other day in an open thread I commented on "the intended public option that should be Sustinet in Connecticut," and it would seem that is to be the case if the Sustinet Health Partnership Board of Directors get their way according to the report they handed in to the Connecticut General Assembly. Jon Walker has the key report paragraphs at FDL and summerizes it all too well, as anyone that has followed Healthcare reform closely would be aware of these realities: Make the jump»

Wise Words -- Vincent Price on Prejudice

Hat-tip Becca of DelphiForums.

Wise words about the danger of prejudice from the Master of the Macabre himself, Vincent Price:

Wise words, indeed.

The Darwin Awards

A friend recently asked why stupidity wasn't fatal -- he was bemoaning the idiocy of anti-environmental groups at the time. While my friend is well aware of just how dangerous and deadly stupidity could be, I took the opportunity to respond anyway in case the occasional lurker was in the vicinity.

The result was a simply little blurb that I thought I'd post here, too. Enjoy! -- GH

__________

>> Why isn't stupidity fatal? <<

Actually, it can be. The Darwin Awards are a good place to check for more information about it.

For the most part, the list is kept relatively free of Urban Legends -- winners must be verifiable, capable of making intelligent decisions and no innocent bystanders can be endangered. More available at the Wikipedia page.

__________

From the Wikipedia page,

__________

The Darwin Awards: A Chronicle of Enterprising Demises is a tongue-in-cheek honor named after evolutionary theorist Charles Darwin. Awards have been given for people who "do a service to Humanity by removing themselves from the gene pool" (i.e., lose the ability to reproduce either by death or sterilization in an idiotic fashion). According to Wendy Northcutt, author of the Darwin Award books: "The Awards honor people who ensure the long-term survival of the human race by removing themselves from the gene pool in a sublimely idiotic fashion." The Darwin Award books state that an attempt is made to disallow known urban legends from the awards, but some older "winners" have been 'grandfathered' to keep their awards. The Darwin Awards site[1] does try to verify all submitted stories, but many similar sites, and the vast number of circulating "Darwin awards" emails, are largely fictional.

__________

So, in summation, stupidity can be fatal, and plays a role in the ongoing evolution of the species through contributions to the "survival of the fittest" aspect of evolutionary development. Winners of the Award successfully remove themselves -- one way or another -- from the gene pool, effectively cleansing of it the blatantly stupid.

Unfortunately for us, there's an unforeseen parallel evolutionary track that nobody ever seems to mention: among the stupid, ~the stronger stupid~ survives, and lives to continue to taint the gene pool. That, of course, explains that stubborn, stupid 30% of unevolved cretins who continue to undermine the nation and make a mockery of reality-based thinking. It also appears to explain modern-day Republican leadership's endemic hypocrisy.

Ah, Darwin -- you inglorious bastard. See what you've gotten us into now...?

Saturday Mid-Day Open Thread: Sage Advice, Motorcycling Edition

Crossposted to DailyKos.

Health and safety concerns permeate almost every aspect of our day-to-day life. Sometimes, these concerns manifest themselves in obvious ways. Other times, not so much. Sometimes, the role of health and safety is recalled to our conscious awareness through tragedy, violence or anger. Other times, it is through the gentle gestures of a stranger who catches us off guard with his or her concern.

Below is an excerpt from a post on DelphiForums by a friend, Becca. Becca likes motorcycles. An avid rider, she's into all aspects of biking and pretty well informed. The other day, she had an encounter that she thought was well worth sharing.

Check it out:

__________

Today I was out riding my motorcycle. I was wearing full leathers, had a tank bag, I should have looked like I knew what I was doing. I made a right-hand turn at an intersection and travelled down the road to another intersection and stopped for the light. A man behind me blipped his horn once or twice to get my attention. I looked back, and he was waving me to stay put. He put on his hazards and got out of his truck. He walked to me - with a pronounced limp. He *very politely* dressed me down for A) not signaling my turn, and more importantly B) didn't look all around before making my move. He explained that he has ridden a motorcycle for 40 years, racing, riding, just about everything you could think to do on a motorcycle. He was absolutely right, too, about my inattention, and I told him so and thanked him for giving me a wake-up call.

Before we parted, I noticed he was wearing digital camouflage and a Marines T-shirt. I asked him if he was a Marine, and he said yes. I held out my hand and said, "Thank you for your service." He smiled and headed back to his truck.

Thinking about it, that was a fantastically nice thing for someone to do. It took guts and it took smarts. It probably also took a loss of someone who also rode, but I don't want to think about that. I'm just thankful that such people exist.

__________

With all the griping, sniping, angry sign-carrying, name calling, conspiracy theorizing and incitement-inducing going on out in the world today, there are still those among us who take the time to look out for others and to speak their mind.

There's still hope for us -- as a nation, as a race and for life on earth.

We just have to get used to the thought of being more like the Marine who stopped to talk to my friend.

In the comments, please share any encounters or experiences you have had that helped to remind you about basic health and safety concerns, or illustrate how the good intentions others may have brightened your day (or week, month, year, life, etc.).

And, as always, remember: This is an Open Thread.

On another note, some sad news: Dupa T. Parrot -- a.k.a. George Brickner -- has passed away. George, through his online role as Dupa, served as the source of several posts that appeared on ePluribus Media over the years, and often shared such tidbits for discussion among his friends on Delphi. He will be sorely missed.

Sunday Morning Open Thread: Our Furry Friends, Animal Companion Edition

Have you ever had a special pet or shared a unique bond with an animal -- cat, dog, bird, horse, gecko, goldfish, etc.? A recent conversation in an online forum about "the smartest animal I've ever known" brought back a lot of memories of my dog Missy, an Alaskan Malamute who exhibited almost human-like intelligence.

I've written a lot about Missy in the past -- indeed, I'm still writing about her -- but most of the writings I've shared to date touched upon the special relationship she'd formed with my mother-in-law, "Mumsie," who suffered from Alzheimer's disease. Here's an excerpt from one of those pieces, Yia-Yia and Woo-Woo: BFF (also available on dKos and elsewhere):

__________

Mumsie knew how much Missy loved her, and adored her all the more in return. Even though she had always hated the cold and her advancing deterioration made her even more susceptible, she would don a jacket and a hat in cold weather to go out onto the porch so that Missy could get some sunlight and fresh air and have someone to talk to.

And they'd talk.

They'd talk, and sit, and visit with each other -- Missy, enjoying the sun and the company of her friend with the understanding of how difficult it was for her to endure the cold, and Mumsie, warmed by her capacity to comfort her aging friend in a time of need in a way that nobody else could.

__________

Missy wasn't the only animal I've known who exhibited a higher-than-expected level of intelligence or who'd become such an integral part of the family. My friend BugBear's dog Smoky was another such animal -- also a Malamute, but that's not to say that breed alone is a determining factor.

I've known dogs of other breeds as well as quite a variety of cats, and even a horse or two, who were all uniquely intelligent and personable.

Our animals provide us with much -- companionship, assistance, entertainment and friendship are just a few of the benefits. For some people, their pets serve as surrogate children, providing a source of responsibility while exercising a need to nurture and, in return, receiving unconditionally faithful companionship.

What animals have you known through your life who have made a significant, positive impression upon you?

And remember, this is an Open Thread.

 

Wednesday Morning Open Thread: Insomnia, xkcd Edition

Ever had a sleepless night? Or a night where you'd sleep intensely for 30 minutes or an hour, then wake up and be fully alert for another hour before being able to sleep again...and have that pattern repeat ~all night long~???

Still No Sleep
Click to enlarge. Attribution: xkcd.1

Interrupted sleep patterns -- insomnia -- can impact our ability to think clearly, in addition to wreaking havoc on our physical and mental well being, making sleep deprivation a very serious issue. If your sleep pattern has ~always~ been wonky, then maybe that's normal for you -- or, if you've ~also~ always been a tad unstable or crazed, perhaps you should try to determine if you could adjust your pattern to allow for more sleep in order to afford yourself (and those around you) a bit more respite?

Getting a little more sleep at night (or whenever your lifestyle permits) may also cut down on those annoyingly long and drawn-out philosophical conversations with squirrels and other local flora and fauna.

Whatever your sleep pattern, and regardless of whether you need more or less of it, one thing remains constant: This is an Open Thread.

 

_________________________

Footnote
_________________________

1.   From the XKCD site:

_____

Note: You are welcome to reprint occasional comics pretty much anywhere (presentations, papers, blogs with ads, etc). If you're not outright merchandizing, you're probably fine. Just be sure to attribute the comic to xkcd.com.

_____

 

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