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Thursday, January 27, 2011

Dementia And Pomegranate Juice

This article is copied directly from the Dementia Weekly Web Site. And, the amount the mice drank translated to human proportions is about 2 cups a day. All I have to figure out now is where to find a big tank like that to fill with milk and swim around in... check out the video. They are SO cute!

(hmmmm ...how much milk would it take to fill a swimming pool. I'm just askin'...)

From what I have seen so far in reviewing the research almost any good strong antioxidant is beneficial in treating dementia. This includes almost all berries, some fruits, and many vegetables. So, I decided to make some Pomegranate-Gogi Berry Wine, but more on that later. Yum! 

Dr. Richard Hartman, Phd, is an assistant professor of psychology at Loma Linda University's School of Science and Technology,

When his grandfather passed away from Alzheimer’s disease, Dr. Hartman wanted to make a difference. “It was devastating to see the effects,” he recalls.

Dr. Hartman’s crushing experience with Alzheimer’s may help others fight off the disease. He found that a daily glass of pomegranate juice could halve the build-up of harmful proteins linked to Alzheimer’s disease. In fact, his study has shown that pomegranates work just as well as pharmaceutical medicines.

“This study is the first to show beneficial effects (both behavioral and neuropathological) of pomegranate juice in an animal model of Alzheimer’s disease,” says Dr. Hartman, researcher and lead author of the study. He also collaborated with Washington University researchers on this project.

The study began with transgenic mice predisposed to develop Alzheimer’s-like pathology and symptoms. At a young age, the mice were split into two groups—half received water with added pomegranate-juice concentrate, and the control group received drinking water with the same amount of sugar as the juice. Dr. Hartman’s research found that the mice who drank the pomegranate juice had 50 percent less beta-amyloid plaques in the hippocampus of their brains. The mice drank an average of 5 milliliters of fluid a day, which is roughly equivalent to a human drinking one to two glasses of pomegranate juice a day. The learning and memory abilities of the mice were tested in the Morris water maze, which required the animals to swim and find a submerged platform in a pool of water.

The results are significant. After six months, the pomegranate juice-treated mice learned water maze tasks more quickly and swam faster; and the mice that drank the pomegranate juice had 50 percent less beta-amyloid plaques in the hippocampus of their brains.

Pomegranates contain very high levels of polyphenols (an antioxidant phytochemical that tends to prevent or neutralize the damaging effects of free radicals) as compared to other fruits and vegetables.

This somewhat uncommon fruit is one of the first cultivated crops (with olives, grapes, figs, and dates), developed around 4000 to 3000 BC in the Middle East. It was also used as a folk medicine throughout the ages for a variety of ailments, and it is mentioned in many of the world’s major religions.

Tuesday, January 18, 2011

Top 10 Things You Should Know About Executive Function and My bvFTD

What are executive functions? This seems to confuse many people because there are so many different aspects involved with Frontotemporal Degeneration.

The term “Executive Functions” refers to the higher-level cognitive skills you use to control and coordinate your other cognitive abilities and behaviors. The term is a business metaphor, where the chief executive monitors all of the different departments so that the company can move forward as efficiently and effectively as possible. Who we are, how we organize our lives, how we plan and how we then execute those plans is largely guided by our executive system.

Executive functions can be divided into organizational and regulatory abilities. Organization includes gathering information and structuring it for evaluation. Regulation involves evaluating the available information and modulating your responses to the environment. Seeing a wonderful dessert in front of you may be tempting to devour, but your executive system might remind you that eating it would conflict with your inner goals, such as losing weight. That long range thinking and reasoning is typical of the executive system. One type of executive function is called prospective memory, the ability to project into the future and solve problems that are likely to arise.

    * Organization: attention, planning, sequencing, problem solving, working memory, cognitive flexibility, abstract thinking, rule acquisition, selecting relevant sensory information
    * Regulation: initiation of action, self-control, emotional regulation, monitoring internal and external stimuli, initiating and inhibiting context-specific behavior, moral reasoning, decision-making

Impaired executive functions - see my post on (Dysexecutive Syndrome)

Because these skills integrate information at higher level across cognitive domains, damage to the executive system typically involves a cluster of deficiencies, not just one ability. The loss of that "administrative" control affects the ability to organize and regulate multiple types of information and, therefore, behaviors.

Damage to the executive system, often leads to:
(I have bolded the items on the following list which seem to cause me the most difficulty.)

    * Socially inappropriate behavior
    * Inability to apply consequences from past actions
    * Difficulty with abstract concepts (the inability to make the leap from the symbolic to the real world)
    * Difficulty in planning and initiation (getting started)
    * Difficulty with verbal fluency
    * Inability to multitask
    * Difficulty processing, storing, and/or retrieving information
    * Frequent “policing” by others to monitor the appropriateness of their actions
    * Loss of fine motor skills like grabbing something with your thumb and forefinger more than gross motor skills like running and jumping
    * Moody or “roller coaster” emotions
    * Lack of concern toward people and animals
    * Loss of interest in activities
    * Unawareness or denial that their behavior is a problem (How can you self-asses this one?)
    * Antisocial behavior associated with disinhibition
    * Trouble planning for the future

In addition to frontotemporal dementia, executive function deficits are associated with a number of psychiatric and developmental disorders, including obsessive-compulsive disorder, Tourette's syndrome, depression, schizophrenia, attention-deficit/hyperactivity disorder, autism and addiction.

Executive functions are difficult to assess directly since they coordinate other cognitive skills. Damage to memory, language, visuospatial skills and other cognitive functions can impact how a person performs on tests of executive function. Executive skills are also grounded in real world experience, which makes laboratory tests more difficult to create. The instruments used to assess executive behavior require mental agility, foresight, planning and freedom from distraction. Widely used tests include the Word Fluency Task, Stroop Test, Wisconsin Card Sorting Test (I did poorly on this one, though I thought I was doing well), Trailmaking Test (Another one I had difficulty with on the second phase which is typical) and Porteus Mazes. These tests are typically administered as part of a Psychoneurological Exam.

Executive deficits have been associated with damage to the most forward areas of the frontal lobes (located just above your eyes), as well as the cortical and subcortical structures that connect to the frontal lobes. The executive system involves the prefrontal cortex, basal ganglia and thalamus.

The frontal lobes are the last areas of the brain to fully develop. This area of the brain was evolutionarily late to appear and is much larger in human beings than in our closest non-human primate relatives. The frontal lobes typically account for about 40% of the human brain.

Impact of FTD
Behavioral variant Frontotemporal Dementia (bvFTD)

Progressive shrinking of the tissue in the frontal and anterior temporal lobes of the brain defines bvFTD. The changes most commonly associated with bvFTD are a loss of social skills, loss of concern for the emotions of others, disinhibition and antisocial behaviors, poor moral reasoning, lack of initiation, inappropriate humor, trouble making plans and moderating food intake. Sometimes patients with bvFTD also develop addictive behaviors late in life or show diminished response to pain.

That was more than 10 things, but I never really counted them anyway - I just needed to come up with a title. There are probably a lot more important things to know about Executive Functions, and there is a lot of very specific information in the book, What If It's Not Alzheimer's?

From my personal perspective I tend to divide these Executive Functions more between those that are Cognitive, and those that are Emotional when I try to understand my symptoms. As I describe in several places my biggest Cognitive challenges are with planning and organization, initiation, working memory. My biggest Emotional challenge is my desire to isolate myself, so I guess this is a form of antisocial behavior. I also exhibit an overall damping of emotions which usually manifests itself as, "I just don't give a rat's-ass!".

The drugs, and supplements which I am currently taking seem to alleviate the Cognitive symptoms more than the Emotional ones. Generally speaking, since I started taking Aricept and Ginkgo Biloba I think better overall than I did a year ago. The flip-side is that Aricept may make my Emotional symptoms worse. This is why Aricept is not recommended for people with bvFTD. In my case I find it easier to ignore telephone calls, and not reply to emails. For me with my specific set of symptoms and personality I think this is an acceptable trade-off. I am very comfortable with my own company, and I have very understanding friends who do not allow me to isolate myself completely.

So, though I still have Dysexecutive Syndrome, it is my belief that the medications and supplements I am currently taking are having some beneficial effects, though the purpose in my taking them is to attempt to slow the disease progression rather than to treat any specific symptoms.

Please leave you comments or questions below.

Thursday, January 13, 2011

My bvFTD - The Weirdest Side Effect Of All And Some Hot Sauce For Christmas

“Eating highly seasoned food is unhealthful, because it stimulates too much, provokes the appetite too much, and often is indigestible.
- Catharine E. Beecher, 'Miss Beecher’s Domestic Receipt-Book' (1846)
Naga Jolokia Peppers!
I have had a really odd side-effect appear over the past couple months. I am assuming that it is a side-effect rather than a symptom of bvFTD, but there is no way to know for sure other than to discontinue my medications, and see if it goes away. Since it is not too much of a bother, and I don't want to have to re-acclimatize myself to the medications all over again, I will pass on that little experiment. This curious mind doesn't want to know that badly - at least not yet. I first noticed this odd phenomenon shortly after having started taking Aricept, and then introducing the alternative medicines Ginkgo Biloba, Melatonin, Lion's Mane Extract, and Phosphotydlsilene. I have searched all over the Internet, and can find no reference to any known interactions of this type. Go figure!

So what is this odd effect? Don't laugh! I am more sensitive to hot spicy food. It makes my nose run, my eyes tear, and my forehead sweat.

For anyone who thinks Tobasco Sauce is too hot this may not seem very odd at all, but this sudden sensitivity to heat is a huge change for me. I have enjoyed hot spicy foods for many years. For me a Cayenne Pepper is certainly hot, but enjoyable. Tobasco Sauce isn't hot enough, and has too much vinegar. A Habenero Pepper is too hot for me. That means that all except the very hotest spicy foods made with Habenero Peppers caused me no difficulty. I never got the watery eyes, runny nose, and sweaty forehead from anything exept a Habenero - with the exception of a single Hungarian Wax Pepper Plant I grew in my garden which produced the hottest fiery peppers I, or anyone else who was brave enough, had ever tasted. The burn lasted for hours, and nothing helped to alleviate it. I wish I would have tried to grow more from the seeds. Anyway, the point is that I ate hot foods all the time. I loved Hot Wings, and ate them every couple weeks. Szhechuan Chinese was never too hot.

Hot peppers taste hot (pungent) because they contain capsaicinoids. There are actually 6 different chemicals which cause that burning feeling in the mouth when eating hot peppers, though only 5 of them occur in nature. I had always suspected this, but didn't know until recently. It explains the different hot sensations of the various peppers. Some are hot right away on the tip of the tongue, while some build slowly more to the back. Different kinds of peppers affect different areas of the mouth. This adds to the interest and flavors of hot peppers because the different ratios of the capsaicinoids is what makes the heat taste and feel different. There is more to a hot pepper than just the heat.

That heat in a pepper is concentrated in the white pith surrounding the seeds, though it occurs throughout. It is theorized that it evolved to keep mammals from eating the seeds. Mammals have teeth which grind and destroy the seed, and mammals can taste the heat so avoid the peppers. Birds pass the seeds undamaged and undigested spreading them around, and do not have any taste receptors for the heat. Makes sense to me!

People have a wide spectrum of sensitivity to capsaicin depending on the number of taste buds they posses which are specifically attuned to it. Some people are like birds, and cannot taste the heat of hot peppers at all while others have difficulty with even a trace amount. Most people are "tasters", and fall somewhere in the middle. As for me, I consider myself lucky to be a "taster". I can enjoy the taste and feel of a good hot pepper, though I won't win any bets of the, "I can eat this!" variety. I enjoy hot peppers.

I still enjoy hot peppers. I can still tolerate the heat just as I could before. It is no more or less uncomfortable in my mouth than it ever was. But now my eyes water, my nose runs, and my forehead sweats!

I ordered a plate of hot wings while out with one of my favorite sons a couple weeks ago. The hot wings were delicious, but it was embarrassing. I was a sweaty, teary, runny-nosed mess as I blinked, and wiped, and sniffed my way through them. Even the waitress got a chuckle out of it.

So, just how bad is it? Well - I had the exact same problems with the sauce on a shrimp cocktail. Now, if there was even any pepper in it, I couldn't taste it. I did taste the normal spicy goodness of the horseradish, but that was all. All of a sudden my eyes started watering, my nose started running, and my forehead broke out in a sweat. My date for the evening got a good laugh out of it.

So, I told you that, so I could tell you this. My friend of many years duration has always known my love of hot spicy foods. One Christmas he got me a subscription to a magazine dedicated to hot chili's, and hot sauces, loaded with recipes, and fun information. Yes, I may have at times carried it to extremes, and decorated my whole kitchen in a chili pepper theme, but in my defense it was rather popular at the time. I was surprised just before Christmas this year when a large box appeared on my porch. The tracks leading away in the snow instantly identified the mailman as the culprit, and fhe label identified my friend as the sender of the package.

I opened the box on Christmas day to find a great assortment of hot pepper sauces. A few were obviously selected for their "interesting" names, but there was this one. I looked at it, and it was rather plain. Could it be?

The label read simply, "Melinda's Naga Jolokia Sauce". Maybe! Upon reading the fine print it was indeed the Naga Jolokia Pepper from India, also sometimes known as the Ghost Pepper, Naga Morich, or the Bhut (Bhot) Jolokia. It grows in the Indian states of Assam, Nagaland and Manipur, and the Sylhet region of Bangladesh. It can also be found in rural Sri Lanka where it is known as Nai Mirris (cobra chili). Now ya know.

In 2004 a rating of 1,041,427 Scoville Heat Units was made using HPLC analysis by India's Defence Research Laboratory (DRL). For comparison, Tabasco red pepper sauce rates at 2,500–5,000, and pure capsaicin (the chemical responsible for the pungency of pepper plants) rates at 15,000,000–16,000,000 Scoville units. This stuff can cause chemical burns, and can also be fatal. It is a very potent chemical, and must be treated with caution.

In 2005, at New Mexico State University Chile Pepper Institute near Las Cruces, New Mexico, regents Professor Paul Bosland found Bhut Jolokia grown from seed in southern New Mexico to have a Scoville rating of 1,001,304 SHU by HPLC.[4]

In February 2007, Guinness World Records published that the Naga Jolokia was the hottest chili pepper ever submitted for judgment. (This is no longer the hottest pepper in the world. Those silly Brits developed a hybrid of it called the Naga Viper, which is even hotter, and the hottest pepper ever recorded is something called a Dorset Naga Pepper, a type of Scotch Bonnet pepper). None of those other peppers have been submitted to Guinness, so The Naga Jolokia gets the title. The difference is less than 10%, and at the level of heat these peppers have I doubt anyone could tell the difference. I sure couldn't!

But I digress - again. So there I was, sitting in my living room, with a bottle of the hottest pepper sauce in the wolrld in my hand. I read the label out loud, and silence fell on the room when I got to the part about 1,041,427 Scoville Units compared to a Habenero's mere half-million or so.

I looked at my son. My son looked at me. We smiled in instant agreement. Curious minds had to know!

I carefully shook it up, and then opened the bottle like I was handling a hand grenade. I placed a drop about the size of a pinhead on my fingertip. My son did the same. The onlookers sat in hushed wonder at our foolishness.

At the count of three, we both tasted. Yum! What a wonderful peppery flavor! It was rich and complex, and hot. I looked at my son, and smiled. He smiled back. There was a couple seconds there where the flavors of the pepper were very pleasant, then the heat of the capsaicinoids started to build. It spread. I looked at my son, and his eyes were wide open like he had just hit his thumb with a hammer. I smiled. I ran into the kitchen, and grabbed the milk jug out of the refrigerator. I gulped, but it didn't even phase the hot burning sensations. My son did the same. There was raucous laughter coming from my living room. There was plenty of laughter in the kitchen, too, but it was punctuated by snorts and gasps of mouth-burning pain.  Well, after a few minutes the pain subsided to a level equal to a hot poker being applied liberally to the tongue. My speech was slurred because my tongue wouldn't work right for about the next hour. It was quite an experience. My son and I both survived tasting the "Hottest Pepper In The World!"

As soon as the tip of my tongue grows back, I can't wait to try some more!

Scoville heat units           Examples
15,000,000–16,000,000     Pure capsaicin
8,600,000–9,100,000        Various capsaicinoids (e.g., homocapsaicin,
                                            homodihydrocapsaicin, nordihydrocapsaicin)
5,000,000–5,300,000     Law enforcement grade pepper spray, FN 303 irritant ammunition
855,000–1,359,000     Naga Viper pepper, Naga Jolokia pepper (ghost chili)
350,000–580,000     Red Savina habanero
100,000–350,000     Guntur chilli, Habanero chili, Scotch bonnet pepper, Datil pepper, Rocoto,
                                Piri piri (African bird's eye), Madame Jeanette, Jamaican hot pepper
50,000–100,000             Bird's eye chili, Malagueta pepper, Chiltepin pepper, Pequin pepper
30,000–50,000             Cayenne pepper, Ají pepper, Tabasco pepper, Cumari pepper (Capsicum Chinese)
10,000–23,000             Serrano pepper, Peter pepper
2,500–8,000             Jalapeño pepper, Guajillo pepper, New Mexican varieties of Anaheim pepper,
                             Paprika (Hungarian wax pepper), Tabasco sauce
500–2,500             Anaheim pepper, Poblano pepper, Rocotillo pepper, Peppadew
100–500             Pimento, Peperoncini
0                        No significant heat, Bell pepper, Cubanelle, Aji dulce

Oh, and yes, my eyes teared, my nose ran, and my forehead was all sweaty, but that went away after a few days. It was worth it.

Comments are welcome.

Wednesday, January 12, 2011

New Insight Into the Cause of Common Dementia

If we knew what it was we were doing, it would not be called research, would it?
-Albert Einstein

In a prime-time address, President Bush said he backed limited federal funding for stem cell research. That's right, the President said, this is a quote, "the research could help cure brain diseases like Alzheimer's, Parkinson's, and whatever it is I have."
-Conan O'Brien

The following is a relatively recent research study which has not been widely reported - at least I have not seen it anywhere. I accidentally stumbled across it when researching something for a future post on the chemical pathways of tauopathies.. Unfortunately for those afflicted with Frontotemporal Dementia, or Frontotemporal Lobar Degeneration as it is referred to in the research, this study just serves to point out how little is known. The upside of this research is that it offers a promising chemical pathway to replace the unsuccessful, and all but abandoned, attempts to ameliorate the accumulation of protein bodies. The downside is that it points out how far in the future any application for treatments may be. But, Hey! There is hope for what tomorrow may bring.

Oh! ...and another thing - about the title they used to publish this under - there is nothing in any way "common" about bvFTD! I'm just sayin'!

New Insight Into the Cause of Common Dementia, ScienceDaily (Nov. 26, 2010)

Researchers at the Mayo Clinic campus in Florida have found a clue as to how some people develop a form of dementia that affects the brain areas associated with personality, behavior, and language.

In the Nov. 17 online issue of the American Journal of Human Genetics, the scientists write that they discovered a link between two proteins -- progranulin and sortilin -- they say might open new avenues for the treatment of frontotemporal lobar degeneration (FTLD), which occurs in the frontal lobe and temporal lobe of the brain. This form of dementia, which is currently untreatable, generally occurs in younger people, compared to other common neurodegenerative disorders such as Alzheimer's disease.

"We now can look for a direct link between these two proteins and the development of FTLD," says the study's lead author, neuroscientist Rosa Rademakers, Ph.D. "The hope is that if we do find a strong association, it might be possible to manipulate levels of one or both of these proteins therapeutically."

Coincidentally, a research group from Yale University led by Stephen Strittmatter, M.D., Ph.D., has also pinpointed sortilin's association with progranulin -- thus confirming Mayo's results. Their study is being published in Neuron, also on Nov. 17.

FTLD is a family of brain diseases that are believed to share some common molecular features. One is the presence of mutations in the gene that produces tau protein in neurons. The other is mutations in the progranulin gene that Mayo Clinic researchers and their colleagues discovered in 2006. They found that 5 to 10 percent of patients with FTLD have a mutation in this gene, and that these mutations lead to a substantial loss of normal progranulin protein production, and development of FTLD.

The protein made by the progranulin gene is found throughout the body, and performs different functions according to the type of tissue (organ) it is located in. But in the brain, it is believed to support neurons and keep them healthy.

Still, researchers do not really know how normal progranulin protein functions in the brain -- what other proteins it interacts with -- and so in this study they sought to uncover clues about progranulin biology by conducting a genome-wide association study (GWAS).

Based on their previous findings that a simple blood test is able to measure progranulin levels in plasma and could be used to identify patients with progranulin mutations, they tested blood from 518 healthy individuals in a GWAS to look for genetic variants that could explain some of the normal variability of progranulin levels in plasma. They found very strong association with two genetic variants in the same region of chromosome 1 and confirmed this finding in a second group of 495 healthy individuals.

By reviewing the scientific literature, they further ascertained that the same genetic variant found to be associated with plasma progranulin levels also affects the levels of the protein sortilin. Like progranulin, sortilin is found throughout the body and is involved in different tasks. In the brain, it is known to be important for survival of brain neurons.

"So, using a genetic approach, we identified a previously unknown connection between sortilin and progranulin," Dr. Rademakers says.

The researchers then studied the two proteins in cell culture and showed that the amount of sortilin in cells determines how much progranulin is taken inside or remains outside of a cell. "Our study shows that changes in the levels of sortilin result in different levels of progranulin available to cells. Given that we found FTLD patients often have less progranulin than they should, we believe that if you can manipulate levels of progranulin and/or sortilin in the brain, you might have a way to treat this disorder," says Dr. Rademakers. (If he is on the right track, this is a huge breakthrough. If not, like all the rest of the research so far, it is just another blind alley.)

"Our study and the study led by the Yale researchers describe completely independent and unbiased screens which both identified this protein sortilin as being important in the regulation of progranulin," Dr. Rademakers says. "This obviously opens new avenues for treatment for patients with progranulin mutations and perhaps dementia patients in general."

Researchers from the National Institutes of Health, University College London, the University of British Columbia, and Mayo Clinic in Minnesota also participated in this study.

The study was funded by the National Institutes of Health and the Consortium for Frontotemporal Dementia Research.

Comments are welcome.

Monday, January 3, 2011

Symptoms: My Perspective - Remember-Forget-Remember-Forget-Then Remember Again...

Life is all memory except for the one present moment that goes by so quick you can hardly catch it going. 
        -TENNESSEE WILLIAMS, The Milk Train Doesn't Stop Here Anymore

Everything here is my account of what happened to me, or my interpretation of stuff. Every case of FTD is different. Keep in mind as you read this that the person who wrote this has dementia. That would be ME.
Medical Disclaimer.

I was looking over the stats for this blog today, and one of the features is that I can tell what someone searched for on Google who found my bvFTD Blog. This is always interesting, especially some of the more bizarre searches that end up here, but one in particular caught my attention today.

The exact search term used was, "do you forget to do something then remember with dementia". Now why Google pointed them to my blog is a wonder, but I hope they found something of significance, or at least entertaining. What interested me was that I do have that happen all the time, and I have not ever seen it explicitly listed anywhere as a symptom of any form of dementia.

Holes... lost memories... was ever anything there?
 I will try to describe what it is like from my perspective. I would also like to note here that using a daily to-do list helps to address and manage this symptom in day-to-day living, but I am currently not using a daily reminder list. I have not used one since starting Aricept and Ginkgo, and more on that can be found here, and here too, if you want to read more about it. But I digress, as usual...

It is easiest for me if I use an example, so here is one that I finally took care of today and is fresh in my mind. I need to write a check for my medical benefits once a month. I do not get an invoice, or any kind of reminder to do it, so I have to remember it on my own. I had made a stack of envelopes, and placed them in my bill organizer last May so I would not forget. I ran out of envelopes last month, so there were none left as a reminder. I never got around to putting any more in there... at least not yet.  (A workaround!)

I remembered that I had to remember to do it again in December when I wrote the check last November. I did not make out a new envelope as a reminder. I remembered it again quite well when I was doing the monthly bills, but decided at that time that since it was the Christmas Season I would wait a few days before I sent the check. I forgot all about it. I remembered it just before I went to sleep a few days later. Then I forgot all about it. I remembered it Monday morning, but forgot to write the check Monday afternoon. Never even crossed my mind the next few days. Then I remembered it again, but didn't do anything about it just then, and forgot about it. I thought about it Friday, remembered it again on Sunday, and finally wrote the check and mailed it today. Whew! 

Now, looking back, I can remember when I was thinking about it - when I actually remembered it - when I forgot it - and when I remembered it again. I also can remember that in the times between those instances of remembering it, I had no clue. None! It was nowhere in my head, at least not accessible at the times in between. I know it was there as a memory because it came back later, but it was not available to me in any way in between the time I remember it.

This is not like other memories where you are not thinking of them, but can access them if asked a question. These little short-term lapses in memory are different. The memory is completely gone, and not accessible. If you asked me about it in between times, I might or might not remember. I might just give you one of those blank looks I have so often lately.

Subjectively it is like my memory comes and goes. It slips in and out. It is here in its entirety, strong and clear, but then it is as if it never was - until it pops up again out of nowhere.

This is just one recent example that happens to be fresh in my mind because it happened today, and was of some importance. The truth of the matter is that it happens all of the time. I know... about now you are all saying "Happens to me too." But it happens to me all the time. Several times a day I will have some question, or thought, or want to remember to do something... then "Poof!" Its gone! I might want to look something up, or watch something on TV, think of someone's name, or call someone, or send an email, or answer a text message, or... or... or...

"Pop!" A few days later it returns, as if it had never left. Well, let me tell you. It did leave. In the time between when I think it, and when I remember it again, I got nuthin'. Nothing at all. Not even a hint, or association of the memory. It does not exist as far as my functionality is concerned.

As an outside observer you might interpret it as a non-sequitur when I suddenly remembered something that had been important for me to remember a couple days ago, and act or comment on it out of the blue. These little forgotten tid-bits tend to accumulate, and might seem a little strange if you are not used to it. I might seem a little "flighty", or at the least disorganized.

Whatever it was probably does not readily fit into the context of the present situation - which is interesting in itself because it is not that what I am doing at the time jogs my memory - the memory just pops in unrelated to what is going on around me. To you it seems as if I might be exhibiting some ADHD-like symptoms, but to me it is just remembering something I have been trying to keep track of for a while, and I know I gotta deal with it before I forget again, or put it off and hope I remember again if it doesn't need immediate attention like mailing the check did today.

As a whole this symptom is a little interesting, but it has very little impact on my daily living. My usual workarounds, and daily routines take care of the normal things. Most of the other stuff takes care of itself. If I keep forgetting to return a call, all of my close friends know to just call me again. It is the best I can do. Eventually I do remember, but then I may not act on it because if the whole initiation and motivation problems that I have. (You can use the "Symptoms" label to check out the whole lot.)  Oh bother! I just can't win!

Let me try a different way to explain it: suppose you have an appointment. In the past somewhere in my mind I always knew I had the appointment. It became more prominent as the time for the appointment grew near. Not so with me now. I remember the appointment - then totally forget about the appointment as if it never existed in this universe - and then all of a sudden remember it again - forget - remember - forget - remember. When it gets close I start using reminders like notes or leaving something in a prominent location, or setting an alarm. I usually do not miss appointments, at least not so far.

So, for whoever was searching for, "do you forget to do something then remember with dementia", and was directed to my Frontotemporal Dementia Blog, my answer is that "I certainly do!"

...and if this confused you, just read it a few times, and give it a few days... it probably won't help, but that is what I do, and eventually you will just forget all about it. Here is another example I just remembered... POP!... out of the blue....

The advantage of a bad memory is that one enjoys several times the same good things for the first time.
                                     -Friedrich Nietzsche (who, to my mind, was mostly an idiot!)

So... my son asked what I wanted for Christmas. I gave him a suggestion. He liked the idea, so I gave him explicit directions on how to get to the store. He phoned me on the way to the store to affirm the directions. I was pretty sure of the contents of at least one of my Christmas presents. That was maybe three days before Christmas. He wrapped it very nicely - made it look like a cat just to confuse me - and it worked. I totally forgot all about it on Christmas day when I was opening presents. I had known what it was when he went to buy it. When it was wrapped and under the tree I had no memory whatsoever of him going to get it. In this case, it worked out great. I got exactly what I wanted... and I was genuinely surprised when I opened it.

After I saw it, then I remembered the whole incident, but right at the time... I had nuthin'!

Comments are welcome.