This makes me think of my great-grandmother

who lived with Alzheimer's disease for fifteen years.

Here are two interesting articles

New Alzheimer's Blood Test Is Nearly 100 Percent

and

Doctors’ hand hygiene plummets unless they’re monitored, study finds

Some things I've been paying attention to on Facebook, that I thought I'd share here

This Teacher Wrote Personal Letters To 100 Students After Nearly Losing One To Suicide

We never know what a difference some small act of kindness can be. A teacher, Brittni Darras, learned that one of her students had been saved while attempting suicide, and wrote her a personal note while she was in the hospital, and it really touched the student, who hadn't thought anyone cared. Because the signs of depression and suicidal thoughts are not always obvious, she then sat down and wrote over a hundred personal, hand-written notes to her various students, giving them a compliment here, or telling a story there, however she connected with each one. What a gift. We can all do small acts of kindness to help others who may be facing very difficult times.

An Amazing Village Designed Just for People with Dementia

I so hope this idea catches on!

At Hogeweyk, the interior of the security perimeter is its own little village—which means that patients can move about as they wish without being in danger.

Each apartment hosts six to eight people, including caretakers—who wear street clothes—and the relationship between the two is unique. Residents help with everything from cooking to cleaning. They can buy whatever they want from the grocery. They can get their hair done or go to a restaurant. It's those basic routines and rituals that can help residents maintain a better quality of living.

Click here for more on the concept of Dementia Villages. As the Gizmodo article points out, 1 in 3 seniors will die with dementia. 1 in 3. It's one of my greatest fears; I watched my great-grandmother decline with Alzheimer's for fifteen years. SHe was lucky; she was able to stay in her home, cared for by her daughter, my grandmother, but at cost--my grandmother outlived her mother by a scant two years, and while the official cause of death was lung cancer, I truly believe she gave all of her stamina and fight up trying to care for her mother, leaving her no reserve for herself. They said my grandfather had dementia, although in his case, I think he just didn't have enough oxygen in his blood, as he had COPD and emphysema for years, and would wander at the hospital with Sundowner's syndrome (when people act strangely after dark in unfamiliar surroundings) without his oxygen on. My grandmother was pretty sharp to a point, but she didn't know my mom all the time, or would fuss over things that weren't real. I already have issues with memory and so I have to admit, I worry about what will happen to me--especially without children or other close family members to care for me, if I should get Alzheimer's or some other form of dementia. But speaking of dementia, if you are dealing with this in a loved one, be sure to read 16 Things I Would Want If I Got Dementia: A heartfelt wish list from a dementia care worker by Rachael Wonderlin, who works with patients with dementia.

Oh, and I don't know who came up with this, but I love it, so I'm going to end this post on a lighter note:



And this hit a chord, maybe because, I don't know, I managed to get hit by a car a few years ago while obeying all laws and walking in the crosswalk with the light:



Okay, I think I'm going to do some reading after I forage for a snack. I'm reading Meghan Telpner's UnDiet: The Shiny, Happy, Vibrant, Gluten-Free, Plant-Based Way To Look Better, Feel Better, And Live Better Each And Every Day!, so I guess it better be a healthy snack. :)

Went out with some of my co-workers tonight

as a goodbye to one of the women who's leaving. We went to the Shamrock Bar and Grille in Patchen, and I although I didn't have any alcohol (I was driving, and besides, I don't like alcohol as a general rule), I did get some decent fish and chips. I haven't actually been in a bar in a long time. I think the last was with Bill and Liz years ago at McCarthy's downtown. Several of the guys played darts, and the rest of us visited. I was there about an hour and a half and then came home, but it was pretty fun. Maybe I should try socialising more.

So now I'm home and I have the windows cracked a bit. In just a little while, I may go outside and see if I can see the moon rising, as the partial lunar eclipse is supposed to hit its peak at about 7:50 pm.

Today was busy yet productive. I'm still behind on my referrals (there are just so many, and I only really am supposed to work on them for about an hour, maybe two, a day), but I finally got some things finished and got some books out of the way that were on the library tables in boxes. I did what I could to get everything ready for Monday, and then closed up shop and went to visit with people at the bar. I won't say I managed to totally relax (social situations make me a little anxious, although this wasn't too bad as I knew almost everyone and have for years).

I was originally going to try to do two doctor's appointments on Monday and take off the whole day from work, but that really wasn't feasible. There are several high-volume clinic days next week, and I'll have lots to do. So I moved my sleep centre appointment to Tuesday of the next week so they wouldn't be too close together. I did fill out my paperwork for that appointment, though, including my tendency to fall asleep early and then wake up for a couple of hours in the middle of the night. That can't be good for you. There was a thing in the news today (Sleep 'Detoxes' The Brain, New Research Suggests) about how sleep is when our brains clear out the beta-amyloid materials that cause the plaques seen in Alzheimer's, as well as other waste products. I really fear getting dementia as I get older (I have a family history, and the diabetes can contribute to it), so I probably need better, uninterrupted sleep. I'm tired now, but I'm going to try to stay up for awhile more. Of course, one reason I'm tired is being the geek that I am, I stayed up working on two computers updating to the new operating system. So that's totally my fault. But I've held up pretty well as the day has progressed.

I do think I'm going to go listen to some music and see if I can get my muscles to relax. I'm not usually in to supplements, but I did some research on glucosamine sulfate, which is supposed to help joints that have osteoarthritis, and I decided to try some. Clinical studies have been a mixed bag, but it sure is helping a friend's dog, and I'm willing to give it a bit of time to see if I can benefit. One of my co-workers takes it and chondroitin and says it really has helped. Most of what I read indicated that for some people, glucosamine sulfate helps, but that adding other things doesn't necessarily boost the efficacy overall. So I'll try just that for now. I lucked out, too--a bottle at Rite Aid with 60 pills was labelled $24.99, and they were buy one get one free with a wellness card. I used my card, and in fact, it rang up at $10.99, so I essentially got them for about $5.50 a bottle. Not bad. The name-brand stuff was terribly expensive. I just hope this has a decent amount in it. Some of the studies pointed out that being a dietary supplement that is essentially unregulated, the amounts on the label and in actuality vary widely from brand to brand. Anyway, we'll see if it will help my knees and other joints noticeably.

For fifteen years

I watched my great-grandmother's decline from Alzheimer's. But I wasn't her primary caregiver; that was my grandmother, her daughter, who was a registered nurse. So I didn't see her day in and day out. But every holiday I was there, and whenever I could get away from school and work. The changes were probably more apparent to me then. My great-grandmother went from being a vibrant, feisty woman to someone who thought the people on the TV were taking her on joyrides, to finally being uncommunicative and trapped in her own strange thoughts. She needed constant care, and my grandmother provided it. As sometimes happens, she became lucid right before death, and sadly, by the time my great-grandmother died in 1991, my grandmother, worn out from caregiving, was battling lung cancer, and outlived her mother by only a couple of years.

Even though it's been so many years, the pain of seeing what Alzheimer's did to my family is still very fresh in my mind and emotions. It is a horrible disease, and the Baby Boomer generation is poised to be the largest to suffer it of all, a generation already 'sandwiched' between truly elderly parents and their kids. And their kids, my generation, will be caring for the Boomers who have it. My own fear is that I will get it. Some have linked diabetes to it, for example, and I am diabetic, as is most of my family. It's a shadow hanging over us. Granted, my great-grandmother was on my father's side; I pretty much just have my mother's side of the family left. But still....

So this story brought up memories:

Celebrating Thanksgiving with 'Generation Alzheimer's'

Judy Warzenski didn't realize how bad her father, Donald's, memory had gotten until he turned to her sister Joyce and asked, "Where's the girl who was sitting next to you?" He did not recognize Joyce as his own daughter.

This Thanksgiving, Warzenski and her younger siblings will eat Thanksgiving dinner with their father in a private dining room at a nursing home in Pennsylvania. Moving her father there in October was an agonizing decision.

"It's really very upsetting to me," said Warzenski, 62, of central New Jersey. "I promised him I would never do this. I promised him I would never put him in a nursing home, which I've come to realize is an unrealistic promise."

For all those families touched by Alzheimer's, spend time with your loved one as much as you can, before they slip away. And you will be in my thoughts....

And there's this...

New Drug Trial Seeks to Stop Alzheimer’s Before It Starts

Most participants will come from the world’s largest family to experience Alzheimer’s, an extended clan of 5,000 people who live in Medellín, Colombia, and remote mountain villages outside that city. Family members with a specific genetic mutation begin showing cognitive impairment around age 45, and full dementia around age 51, debilitated in their prime working years as their memories fade and the disease quickly assaults their ability to move, eat, speak and communicate.

Three hundred family members will participate in the initial trial. Those with the mutation will be years away from symptoms, some as young as 30.

“Because of this study, we do not feel as alone,” said Gladys Betancur, 39, a family member. Her mother died of Alzheimer’s, three of her siblings already have symptoms, and she had a hysterectomy because of her fears that she has the mutation and would pass it on to her children. “Sometimes we think that life is ending, but now we feel that people are trying to help us.”

Ah, just in time for turning 45 this year...

Brain function can start declining 'as early as age 45'

The results of the tests show that cognitive scores declined in all categories except vocabulary - and there was a faster decline in older people.

The study found a 9.6% decline in mental reasoning in men aged 65-70 and a 7.4% decline for women of the same age.

For men and women aged 45-49, there was a 3.6% decline.

I have 'senior moments' quite often as it is, and I have a great fear of dementia (my great-grandmother had Alzheimer's; my diabetes means I'm at a higher risk for dementia as well). So you can see I didn't care for this story. It's just a reminder of how important it is to exercise the mind as well as the body.

A different tack

Scientist: Treat Alzheimer's 20 years before symptoms: 'Prevention is better than cure,' according to new report

One camp among Alzheimer’s researchers believes this shows that amyloid is simply not the cause. But the majority of researchers, like Gandy, believe that once the plaque appears the damage to the brain is too great to undo and the only hope is to prevent it. Recent studies using brain scans, spinal fluid and blood samples have been searching for signs that appear before the psychological tests reveal the onset of dementia. Much of this work is centered on the handful of families where some members carry a dominant gene variation that causes them to get Alzheimer’s in their 30s, 40s or 50s, but that type of screening is expected to become more common.

It is increasingly apparent from these studies that many of these changes occur as much as 20 years before the symptoms of the disease. Alzheimer's can progress at different rates but typically develops through different stages, beginning with mild cognitive impairment — forgetting familiar words or losing common objects — to difficulty performing tasks to severe dementia and the inability to carry on a conversation or control movements.

This bothered me today

Sarcastic or serious? Missing subtle cues may signal dementia: Gullible sufferers may fall for lies, scams more easily because of brain disease

See, on top of having a somewhat squishy memory, I am terribly gullible and way too trusting. And although I usually spot sarcasm, it's sort of a crap shoot. I have more trouble determining these things in person, observing cues, rather than in writing, for that matter.

Dementia is a great fear of mine. I've spent years with some issues, probably a mix of blood sugar issues, 'fibromyalgia fog', and occasional lability, but having had a great-grandmother with Alzheimer's--and having watched how it unfolded, it is, I suppose, a very real fear of mine. On the other hand, my memory is good for some things--numbers for instance. Things that don't carry much emotion. And I compensate by writing things down (or lately, jotting them into my Kindle, so I don't just lose the papers) or trying to keep essential items, like keys and bus passes, in special designated places.

Well, if I lose my mind, I guess I'll blog bravely into it. But seriously, if you every see a post and wonder what I could be thinking or it doesn't make sense, let me know.

A high toll

Alzheimer's in U.S. claims $202 billion in unpaid care

Nearly 15 million people in the United States take care of a loved one with Alzheimer's disease or another form of dementia, amounting to 17 billion hours or more than $202 billion in unpaid care, Alzheimer's experts said on Tuesday.

If these caregivers all lived in one U.S. state, it would be the nation's fifth largest, according to the Alzheimer's Association's 2011 annual report on the disease.

The report illustrates the growing burden of Alzheimer's disease, a fatal brain-wasting disease that erodes memory, thinking, behavior and the ability to handle daily activities.

My great-grandmother lived about 15 years with Alzheimer's. With her the whole time was my grandmother, an RN who worked tirelessly taking care of her mom while trying to hold down her job, eventually providing round-the-clock care. During that time my great-grandmother went from being a vivacious woman with a wonderful sense of humour to barely responsive. It was painful watching that happen. But it must have been excruciating for a daughter to watch her mother do this; my grandmother had much longer memories of her mother than I did.

When my great-grandmother died, my grandmother was ill and had to lie down at the funeral home. It turned out she had lung cancer. She outlived her mother by not quite two years. Determined to not burden anyone with her care, she placed herself in the same nursing facility she had worked in. I visited her weekly, while going to school full-time and working, and did what I could, but I wasn't really her caregiver.

I firmly believe that while my grandmother's illness was caused by a lifetime of smoking, her rapid decline had to do with being worn down from all the years of caring for her mother, both in terms of the physical and mental toll.

And it's not just Alzheimer's, although I think that may be one of the hardest illnesses to care for someone with. My mother is now caring for my grandmother round the clock on weekends and all but 8 hours a day in the week. She's a nurse, and she's the only child that is nearby, so it has devolved to her to take care of her mom.

What will happen to my mother's generation, the Baby Boomers, who are so large in numbers but who had quite smaller families themselves? My mother is in her early 60s. Unlike my grandmother and my mother, I'm not a nurse. I don't know the first thing about caring for someone. So I worry about what might happen. But I'm her only child, and it would be my responsibility. I would do what I can.

And sometimes, just sometimes, I worry about my own future. I don't have children. I'll probably wind up in some care home somewhere. and my best friend will probably put me in footed pyjamas, which I despise.. And I worry about Alzheimer's. I already have memory and at times it seems, cognition issues, probably secondary to the diabetes and my attention deficit disorder. I worry about being a burden on someone. I worry about not having anyone to care for me. I worry about slipping away like my great-grandmother did.

This just breaks my heart; I so hope they get to marry, and Proposition 8 be damned

Alzheimer's Patient Wants To Marry While He Still Recognizes His Partner

The two Californians have been together for 40 years. Surely that's a testimony to commitment.

(The sound quality on the video isn't very good, but it's important to hear it in their own words, so turn it up.)

Philanthropy Friday #3

Alzheimer's Association: Greater Kentucky and Southern Indiana Chapter - $10

My great-grandmother, Carmen Duncan, had Alzheimer's for fifteen years or more before her death. I watched my grandmother, Frances Vanarsdall, an RN, spend that time caring for her mother as she deteriorated. In the end, my grandmother only outlived her mother by two years. Officially the cause of death was lung cancer; unofficially, I believe, caregiving took every bit of her strength.

My great-grandmother was a wonderful woman, very lively and not afraid to give you a piece of her mind. When I was little, she made banana pudding, and gave me creamed coffee to play with my tea set with. She built a table for me and put it in the kitchen window, and I would stay there playing and colouring while she worked there.

In the early stages of Alzheimer's, she might say funny things, like the people on the TV were taking her for a ride. She talked of old beaux. She was in some ways a delight, but it was still heart-breaking to see her like that.

In the end, she was mostly unresponsive. Alzheimer's had robbed her of so much. Her last day she seemed to know her daughters. They say people sometimes do that, perk up and become clear as they get ready to die. I don't know about that, but I remember my great-grandmother (and grandmother) fondly, and in the spirit of helping others dealing with this disease, I'm donating to this charity. I know it isn't a lot, but with other donations it can make a difference.

Speaking of folic acid, and therefore B vitamins....

Vitamin B 'puts off Alzheimer's'

A new study suggests high doses of B vitamins may halve the rate of brain shrinkage in older people experiencing some of the warning signs of Alzheimer's disease.

Brain shrinkage is one of the symptoms of mild cognitive impairment, which often leads to dementia.

Researchers say this could be the first step towards finding a way to delay the onset of Alzheimer's.

Experts said the findings were important but more research was needed.

Let's hope so. It would be a cheap way to help prevent a horrible disease that robs not only the memory but also the spark of personality in so many people.

Indicators for Alzheimer's could lead to better and early management some day

Spinal fluid test may help diagnose Alzheimer's: Markers help spot disease early, but predicting who will develop disease is still years away

Measuring certain proteins in spinal fluid can accurately diagnose Alzheimer's and predict which patients with memory problems will develop the fatal brain-wasting disease, finds a new report by Belgian researchers.

Taken a step further, they may also help identify early signs of the disease in healthy people, the team reported Monday in the Archives of Neurology.

Geert De Meyer and colleagues at Ghent University in Belgium said measuring traces of beta amyloid and tau — two proteins associated with the telltale plaques and tangles that form in the brains of patients with Alzheimer's — accurately detected Alzheimer's in 90 percent of patients with the disease.

They were also able to detect 100 percent of people with memory impairments who would progress to Alzheimer's disease within five years. And they detected Alzheimer's proteins in 36 percent of people with normal brain function.

Alzheimer's took the vibrancy and life of my great-grandmother, and I must admit it is one of my fears of growing old, especially as I have problems with memory already in my 40s. But I have hope that developments like this can lead to early intervention and treatment, equaling a better quality of life for Alzheimer's patients.

Alzheimer's is a horrible disease, so much so when it strikes your CHILDREN

Alzheimer’s Stalks a Colombian Family

Tucked away on a steep street in this rough-hewn mountain town, an old woman found herself diapering her middle-age children.

At frighteningly young ages, in their 40s, four of Laura Cuartas’s children began forgetting and falling apart, assaulted by what people here have long called La Bobera, the foolishness. It is a condition attributed, in hushed rumors, to everything from touching a mysterious tree to the revenge of a wronged priest.

It is Alzheimer’s disease, and at 82, Mrs. Cuartas, her gray raisin of a face grave, takes care of three of her afflicted children.

A fourth lives in Medellín and is cared for there. He married a distant cousin whose also has three siblings with Alzheimer's. The outlook is bleak for their children, who have genes from both sides.

The one bright thing about this isolated Andean pocket of a population where early-onset Alzheimer's is so rampant is that scientists can study them and perhaps find drugs or vaccines that could save those not yet in the throes of the disorder, not only there, but around the world.

I have to admit, Alzheimer's is something I dread. My great-grandmother lived with it for at least fifteen years, going from a vibrant, sassy woman to a shell of a person, rarely communicating or interacting with those around her. My own memory is abysmal, who used to never have to take notes in high school because I just remembered it all. I live in the South, which seems to have higher rates than average. It's a real fear of mine.

For more information on Alzheimer's, there is an excellent booklet by the Alzheimer's Association called 2010 Alzheimer's Facts and Figures (a PDF), plus the association itself is a great resource.

A little scary

Can you catch Alzheimer’s disease?: Controversial theory links the memory-erasing condition to herpes virus

By that they mean the Herpes Simplex I virus, the one that causes fever blisters. I have it (thanks to my mom when I was little). Alzheimer's is a fear of mine; I live in a state with a high rate for it and my own great-grandmother had it for years before she died; I watched her deteriorate for much of my life, and it was heart-breaking. The idea that a virus that lurks in your system could also rob you of your memory, change your personality, and slowly make you lose everything that is special in life is horrific.

This so frightens me

A friend who has known me 20 years has urged me to tell my family doctor about my memory issues and general trouble thinking. Although we sometimes joke about it, I think he really is worried about my having some sort of early-onset Alzheimer's. My great-grandmother had the disease for fifteen years. I watched a vibrant woman of my childhood become more withdrawn to the point of losing either the ability or inclination to talk towards the end. Sometimes it wasn't so bad. She had vivid memories of her youth and talked about her beaux. At some point I remember her telling me about how the people on the TV came and took her for a ride. But it got steadily worse. And as happens sometimes in these cases, on the day she died she seemed to have a sudden burst of clarity, but fleeting.

When I was growing up, I was always the 'smart one'. That identity has lost ground since the person I spend most of my life with is about 40 or so points ahead of me in IQ (and I'm pretty high, he's just off the charts). But even so, learning things used to be my greatest joy, and now I worry because it seems I've retained so little. It's like the things I know are draining from me. And that scares me.

Maybe I should speak with Dr Nesbitt about this. I had an MRI a few years ago, but it was normal--but the only real way to diagnose Alzheimer's is autopsy. It just doesn't show up on scans, generally.

Here is the story of a man who started his battle with Alzheimer's at about my age, and the effects it has had on him and his family:

When Alzheimer's Hits at 40: Early-Onset Sufferers Juggle Children, Job and Dementia

I guess part of my fear, too, is that I don't have a spouse or anyone to really care for me if this were to be my future. And I watched my grandmother burn herself up caregiving for her mother--she was dead within two years of her, even though she was more than two decades younger. I would probably spend my time in some sort of nursing home on Medicaid. I so don't want that life. And because I fear it, I haven't talked to anyone about it rather than my friend--and now here.

An excellent short film

about a mother descending into dementia, and a daughter struggling to keep things together. It's called 'My Name is Lisa' (this won the best short film category in 2007 on YouTube).



The sad thing? Judging by the comments, the vast majority of watchers had no clue that the mom was descending into Alzheimer's. Jeesh.

I actually found out about this because YKWIA (who finds all sorts of things on the Web) found the version with German subtitles:



and of course my name is Lisa (Eilir is my middle name), so he thought he'd found a German counterpart.

It's by Shelton Films and has won several other awards. It puts a lot into a very short video.

Anyway, it's sad, but very good. My great-grandmother had Alzheimer's. I saw her slip away over fifteen years of the disease. This is right on. We think about Alzheimer's as being a disease of the old, but it can strike much younger. According to the film's website, 250,000 children ages 8-18 are caring for someone with Alzheimer's. They suggest the website http://www.actionalz.org for more information on this disease.

Disturbing

I have a real fear of Alzheimer's. My great-grandmother had it; I saw her deteriorate over fifteen years to silence. I live in and am a ninth-generation native of a state ranked 15th in deaths due to Alzheimer's as of 2004 (the last year they have statistics for, apparently). I spent a good chunk of my childhood in the state ranked #1, Louisiana. I already have problems with memory, and it's hard to distinguish factors like normal aging, psychological or medication issues, and something more serious when it's early on. Plus, I have another risk factor according to this article:

Study Links Middle-Age Belly Fat to Dementia

Two scientific 'Wow!' moments

Team Creates Rat Heart Using Cells of Baby Rats

and

Reversal Of Alzheimer's Symptoms Within Minutes [The direct link to the paper on this is: Rapid cognitive improvement in Alzheimer's disease following perispinal etanercept administration, with a commentary also available for free download (both can be viewed through HTML or PDF).]