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Bad day today
Internal Administrator
Posted: Tuesday, January 17, 2012 3:46 PM
Joined: 1/14/2015
Posts: 40463


Originally posted by: Neoh

I'm only one person, and the only one in the family with a medical brain, and we have 5 major mostly rare diseases among the three of us. (Spouse with EOAD, my daughter will ultimately need a liver transplant and had a cancer scare from one of her two other diseases just last week, I've had two major and one minor surgery within the past six months.) I need a break - and none is in sight.

Very heated visit with spouse's neurologist today - bottom line - she still doesn't believe anything is wrong. Her take is that I need something to fixate on so I'm fixated on imaginary memory and reasoning losses. It was nearly all I could do to keep her from walking out on the neurologist who kept us waiting for 2.5 hours. All the work I've done to be graceful about living in her world and not challenging her reality unless absolutely necessary - poof - gone. Nothing graceful at all about today - and I'm still at work trying to play catch-up after three weeks off for major surgery, and three medical visits today...so I'm taking a mini-mental health break to post this.

The diagnosis was apparently misread by the CNP we saw last time - he indicated it was MCI. Apparently it is early stage AD. (Technically, it is still signs of memory loss and dementia "consistent with" early stage AD. . .)

He's doubling the Aricept - the new 23 mg pill. Not sure that will be particularly helpful (and gut may not tolerate it). There was a week of improvement with the increase from 5 mg to 10 mg, but it only lasted a week. Long enough to get my hopes up that she could actually participate in negotiations for (disability) accommodations with my daughter's school - her area of expertise, only to have them come crashing down when the document she wrote a week later was gibberish, again.

After three weeks, we add Namenda to the mix. I'm not happy that her doc isn't interested in refining the specific deficiencies and trying to treat those (executive functioning and some suggestion of frontal lobe involvement far more than memory) - but I can't face the thought of starting all over again trying to find another doctor, and going through the "here's what I've observed" all over again. It is just too painful to my spouse to be confronted with, and ends up in accusations that I forget things too, that I don't trust her, and listening to her recount every rationalization in the book for why what I have been watching for the past six years isn't real, for why she lost her job, why she failed her PhD comps multiple times, why she had to repeat classes, etc...too much.

Time to head home, and hope for a better tomorrow.
Anonymous
Posted: Tuesday, January 17, 2012 3:46 PM
Originally posted by: howdy2u

I'm a little confused - when you say "isn't interested in refining the specific deficiencies and trying to treat those (executive functioning and some suggestion of frontal lobe involvement)", what treatment are you looking for?

As far as I'm aware, her executive functioning is what it is unless she has normal pressure hydrocephalus or another reversible condition. Not really any treatment for that.

As far as the doctor goes, I know you don't want to, but looking for another doctor sounds like the only solution. You need to have a physician you can have a productive conversation with.

I also suspect that because she is such an intelligent person and probably presents herself in a normal manner, you may be lulled into allowing her to participate in activities that are beyond her ability now (disability accommodations). Along with that usually comes a lot of "reasoning and explaining" that tends to turn into arguments and leads to frustration for you.

I would not discuss the disability accommodations with your wife anymore and work on that project alone. If she asks, a general statement telling her it's taken care of may suffice.
Anonymous
Posted: Tuesday, January 17, 2012 3:46 PM
Originally posted by: jfkoc

Hi Neoh...you have been missed! Sorry for all the health problems.

Seconding all that Howdy has said. Only you know how your wife really is. You have struggled with including her in as much as possible. That said I think that you must come to the realization that despite periods of some clarity she is NOT able to function at the level she may sometimes present herself as being at.

I walk a similar road with my husband. His lack of ability is very deceptive. I have to be ever mindful. I concentrate on expecting nothing. He can not, will never be able to recognize his illness. It will not matter how or how often it is explained to him. That is the reality of the situation that I must accept and move on. My job now is to make the most comfortable and happy life for us that I am able to.

Do I continue to look for medical answers? For the best possible medical care? New diagnosis? New medicine? Yes, but I realize that it is probable that nothing new is going to help our situation. I realize that the most important ingredient in the mix now is my attitude. Life is calmer and happier for both of us living with what I call "open acceptance".

Please stay in touch.
Anonymous
Posted: Tuesday, January 17, 2012 3:46 PM
Originally posted by: RHW

quote:
The loss of executive function


Please explain what you mean by this. Thanks.
Anonymous
Posted: Tuesday, January 17, 2012 3:46 PM
Originally posted by: Neoh

quote:
Originally posted by howdy2u:
I'm a little confused - when you say "isn't interested in refining the specific deficiencies and trying to treat those (executive functioning and some suggestion of frontal lobe involvement)", what treatment are you looking for?


Well - partly I expect the doctor to at least be conscious of where the largest deficiencies are and to be thinking/talking about how to address those deficiencies. From anything I have read, dementia is not a one size-fits-all condition. Different manifestations may have different causes or may require different treatments - even within the specific diagnosis of AD.

Yesterday felt a little like my friend who was diagnosed with Type 2 diabetes - which is most commonly associated with obesity. She's 5' and 95 lbs soaking wet - yet her nutrition counseling all focused on how to reach/maintain appropriate body weight. Yes - most AD presents with memory loss the first/most prominent symptom, with larger losses in executive function appearing later. That is not the case for my spouse - her losses are disproportionately in the executive function area with only mild memory impairment at this point.

I know (from friends who practice in the area) that Ritalin has been successfully used to support impaired executive function. I don't know if that is appropriate for my spouse or not, nor do I know whether there are other potential treatments which I may not have accidentally stumbled across because with everything else going on I just haven't had time to research it.

What I got yesterday was all focused on supporting memory loss, and the discussion was directed back to that every time I tried to move it to mediating her largest impairment. The loss of executive function was a major factor in termination from her last full time job 6 years ago, and was what finally got her to agree to a neuropsych evaluation after she failed her PhD comps last year. It is the elephant in the room, and it needs to be addressed. Pretending it is not there is not acceptable.


quote:
Originally posted by howdy2u
I also suspect that because she is such an intelligent person and probably presents herself in a normal manner, you may be lulled into allowing her to participate in activities that are beyond her ability now (disability accommodations).

I would not discuss the disability accommodations with your wife anymore and work on that project alone. If she asks, a general statement telling her it's taken care of may suffice.


Unfortunately, that is far easier said than done. She has practiced law, and been employed in the area of disability advocacy, for decades. I am well aware of her current limitations - but she believes she has none. Keeping her out of what has turned into a real battle with the college for accommodations for her own daughter is pretty hard for her to take. Unfortunately it isn't something that can be explained by "it's taken care of" since it is all too obvious that it is far from taken care of. The college has screwed up big time and it may ultimately end up in a court battle - or our daughter being suspended from college. She is on academic probation this semester because the college failed to grant previous accommodations to address the extremely unpredictable nature of her medical state (and her ability to carry a full time course load).

I am not involving her significantly anymore, but trying to avoid responding directly to why (which comes up repeatedly). In any other area, than the area in which she has been an expert for years, I am finding ways to work around it without being direct. This one, she is just too aware of what is going on - and it is too close to home in too many ways.
Anonymous
Posted: Tuesday, January 17, 2012 3:46 PM
Originally posted by: Neoh

quote:
Originally posted by RHW:
quote:
The loss of executive function


Please explain what you mean by this. Thanks.


Here's my high level understanding, the ability to handle complex thought processes or actions. To plan and carry out multi-step tasks. To be flexible enough to change plans midstream in response to new information.

In daily life, I may ask her to make a request of her doctor (or our daughter's doctor) and give her a next step based on how the doctor responds: If he says "A", do this step next. If he says "B," do this step next. She may mangle the request entirely (or change it in a way that doesn't get the information I need). She may ask the right question and come back with his response but no more (ignored step 2 entirely), or may have gotten Answer "A" and done the next step for "B" (or vice versa). If he says "C" her response would likely be "OK" without any clue as to what the next step might need to be, or what follow-up question might need to be asked next.

(I don't do this anymore - because it always ends badly, but a few years ago she handled most calls like this because she likes talking to people on phones better than I do, so that was how we allocated that particular family task.)

On a more complex level, when she writes papers (which is a part of every job she has ever done), the paragraph and sentence order is illogical (and increasingly the sentences make no sense). Pretty much just brain dumps, without any order or reason. Usually most of the information is there, although the facts are increasingly altered from reality, the narrative just isn't in any logical order.

Not everyone writes well, but writing has always been a part of her life and until perhaps 3-4 years ago she was pretty good at it. The fairly consistent assessment of the people who graded her comp exams last year was that her writing was barely above high school level (and she has earned 4 post-high school degrees, all of which required a significant amount of writing).

In neuropsych testing, one of the tests used to evaluate this is the Wisconsin Card Sorting Test. There is a hidden rule with one or more variables (examples: The object on the card is black (one variable). The number on the card is blue and even (two variables). You are presented with a card and asked whether it follows the hidden rule.

Since you don't know the rule, you just randomly guess on the first card. You are told whether your guess was right or wrong, and you use that information to figure out what the rule is. The goal is to figure out the rule, then to properly sort a series of cards correctly using that rule. After you get a certain number in a row correct (and you probably won't be told in advance how many that will be), the rule changes unexpectedly and you start getting cards wrong again - a change midstream. You have to be flexible enough to recognize that the rule has changed, to figure out the new rule, and to adapt your sorting in accordance with the new rule.

My spouse did not figure out and correctly apply the rule to even a single series of 10 with a rule like "the color of the object on the card is black."
Anonymous
Posted: Tuesday, January 17, 2012 3:46 PM
Originally posted by: lurk

One of the best books I ever read was called "The Misunderstood Child" (I think--it's been a long time.) It tells the order in which babies/children develop; language skills, motor skills, etc.

I can't remember all the functions or the order that they develop, but the last function to develop is the EXECUTIVE FUNCTION. If a child does well in development up to a point and then suddenly has a problem, it is because there is a problem with that particular function. It is up to parents and teachers to determine a method to overcome that particular deficiency so that the child can learn.

When I read the book, suddenly a light bulb came on in my brain, and I couldn't help but think about my son-in-law. He is very smart, but when it comes to fixing something--or even when they had their first baby, and he tried to dress her--he had problems. He was always saying, "This is hopeless; it will never work."

I decided then and have never changed my opinion that he has a problem with his executive function although he is a professional and doing well. He does rote work.

On a very basic note, yesterday I had to leave just as the banana bread was ready to come out of the oven. I was going to get it out, and then have my DH take it out of the pans. I had told him, "When the buzzer goes off, loosen the bread with the spatula and turn it onto the cloth." I showed him what I meant.

But it wasn't finished baking when I should have left home. I called and arranged to be at my appointment five minutes later because he would not have been able to "Check it with a toothpick, and when the toothpick comes out clean, take it out of the oven, set the timer for 10 minutes, and then . . ." (proceed as above).

His executive function would not have allowed him to do those tasks depending upon the toothpick coming out clean or not clean.

Simplistic, but that's the explanation. I totally understand Neoh. (My DH taught my son-in-law many things about fixing sprinkler systems, etc., to learn by example to make up for what he didn't come by naturally.)

Neoh, good luck. Your problem is unique enough that most people won't be able to offer suggestions. Your history with her is your best asset.

I try to clear my mind and focus, focus, focus on a specific challenge, and often, eventually, a little answer will come into my mind. Your circumstance is complex enough that the answers will have to come in tiny chunks. Keep the faith--ya gotta!
Anonymous
Posted: Tuesday, January 17, 2012 3:46 PM
Originally posted by: howdy2u

This may or may not have been mentioned to you before, but because her biggest deficit is executive functioning and not so much memory, she may fit into the Lewy Body Dementia category. You may want to do some reading at this site - in the Online Community section, Discussion Forums, one of the first sections is called Symptoms and Diagnosis. The diagnostic criteria for LBD is listed there.

http://www.lbda.org/category/3438/symptoms.htm
Anonymous
Posted: Tuesday, January 17, 2012 3:46 PM
Originally posted by: Neoh

quote:
Originally posted by jfkoc:
I walk a similar road with my husband. His lack of ability is very deceptive. I have to be ever mindful. I concentrate on expecting nothing. He can not, will never be able to recognize his illness. It will not matter how or how often it is explained to him. That is the reality of the situation that I must accept and move on. My job now is to make the most comfortable and happy life for us that I am able to.


That's where I'm trying to be - yesterday's heated discussion clearly revealed how much damage had already been done by the 6 years I spent struggling to try to get her to recognize something was going on (so it could be evaluated and treated).

I'm far from perfect, and I struggle with how to be more graceful about the couple of areas where I need to insist on objective reality (like my daughter's college accommodations), but I thought I had been doing pretty well.

It turns out that she has years of feeling judged so that even times when my actions or comments have nothing to do with her memory/reasoning loss she takes them as a judgment against her trustworthiness or worth or a competition for who is right or wrong. A card I saw in a game we were playing with extended family over the weekend confused me, so I took a few minutes to double-check what it was I had seen. In her mind that was me trying to prove that I was right and she was wrong because she happened to have the card in her hand when I saw it, or to prove that she couldn't be trusted to handle a simple card properly. That's how she views this entire past 6 years - not as an attempt to identify and treat a medical condition, but as a competition to prove who is right or more trustworthy. I knew she was upset at the time - I had no clue what it was that had set her off until it exploded during the time waiting for the doctor yesterday.

I'm just way too tired to be learning new dance steps while bandaging up all the inadvertent injuries I inflicted in my desperation to get her to someone who could help figure out what was going on.
Anonymous
Posted: Tuesday, January 17, 2012 3:46 PM
Originally posted by: RHW

This makes a lot of sense! My DH was a Marine Biologist and advanced level college and high school science teacher, very intelligent. The examples that you have given apply to him also. These are the issues that forced me to encourage him to retire five years ago. In retirement they are not such an issue as we do not have to deal in the same way that you and your wife have to do with your daughter. If he were still trying to teach it would be a disaster! He simply would not be able to do it. At this point in our life the memory issue is much more of an issue. I wish you the best but I don't think anything is really going to make it better. You sound like you are trying so hard to keep her involved and while that is important I know that it will continue to get harder and harder to do so.
My DH has extensive neuropsych testing planned for Sept. 1st. They say it could take as long as 6 hours. I am anxious to see the results. I am not telling him about it until the day of the test and then just to alert him that we will be going to the Dr. I have found that this works better for him.
I know this is very difficult with your wife. Please know that others share your concerns and you are not alone. Our very best with your daughter, also.
Anonymous
Posted: Tuesday, January 17, 2012 3:46 PM
Originally posted by: Neoh

quote:
Originally posted by howdy2u:
This may or may not have been mentioned to you before, but because her biggest deficit is executive functioning and not so much memory, she may fit into the Lewy Body Dementia category. You may want to do some reading at this site - in the Online Community section, Discussion Forums, one of the first sections is called Symptoms and Diagnosis. The diagnostic criteria for LBD is listed there.

http://www.lbda.org/category/3438/symptoms.htm


Thanks. It is one of the things that I have run across - and certainly one of the things I would hope the neurologist would think to evaluate based on the test results and symptoms being reported.

When I have time, I will do more research raise it with the doc if appropriate - I haven't had time yet, he hasn't been energetic enough yet to bring it up on his own.
Anonymous
Posted: Tuesday, January 17, 2012 3:46 PM
Originally posted by: jfkoc

My husband. also attorney, was writing a book on literary moral philosophy when the slide began. He has been diagnosed with VD. Both memory and executive function are failing. He takes Aricept, Namenda and medication for other illnesses. Ritilan was no help.

I pretty much follow his lead each day, engage him in communication, do something enjoyable etc.The involvement issue is tough. When to involve, when not to. We are at the point that while he is decent company, he is really not capable of being responsible at any task. No follow through or badly botched. I have been able to accomplish "stuff" without his awareness. It is difficult to take care or everything myself but easier without the involvement. Then there is the problem of good and bad days. The function level is just not the same. One needs to be a mind reader.

You might ask yourself why it is important that your wife recognize her illness. What would it matter? Her recognition will not enable her to improve and she may already be well into the stage that she can NOT recognize it. The one person you went to to solve/discuss a problem is not there anymore.

I think the elephant in the room is the fact that it is just going to get worse. It is up to me to make the best of each day for both of us. It is tiring. It is lonely and it is sad!!!
Anonymous
Posted: Tuesday, January 17, 2012 3:46 PM
Originally posted by: Starling

Actually you got your diagnosis. Unless you think she has FTD, you've got what you can get. And she is being put on the only treatment, the two dementia drugs, that exists.

I know how frustrating all of this is.

One thing that might help during the MCI period (which is what they always seem to call the early stages of dementia) is cognitive therapy. My husband got his a bit too late, but what little he managed to keep hold of had him reading and writing his name until early stage 6. So I'm a believer.

At the MCI period all of the list making and calendar using and organizational tools really do make a difference, but in the end they won't work. They will make your life a lot easier for a long time.

I'm sorry you are dealing with doctor denial, but another advantage to cognitive therapy is that you CAN NOT FOOL a cognitive therapist, and her reports will tell the doctor the truth he does not want to hear. Or, she will figure out what is really wrong and give you good news.
Anonymous
Posted: Tuesday, January 17, 2012 3:46 PM
Originally posted by: Neoh

quote:
Originally posted by lurk:
On a very basic note, yesterday I had to leave just as the banana bread was ready to come out of the oven. I was going to get it out, and then have my DH take it out of the pans. I had told him, "When the buzzer goes off, loosen the bread with the spatula and turn it onto the cloth." I showed him what I meant.

But it wasn't finished baking when I should have left home. I called and arranged to be at my appointment five minutes later because he would not have been able to "Check it with a toothpick, and when the toothpick comes out clean, take it out of the oven, set the timer for 10 minutes, and then . . ." (proceed as above).

His executive function would not have allowed him to do those tasks depending upon the toothpick coming out clean or not clean.

Simplistic, but that's the explanation.


That so captures it...and sometimes my downfall is an intervening person that throws a monkey wrench into the simple steps. (The inability to adapt to changes.)

The infamous example I use all the time is leaving her at home to wait for the furnace repair people. My simple instructions were, "turn the thermostat up no more than two degrees above the current temperature."

The reason (which I explained at a time because I really thought she could understand it) was that we have a two stage furnace. If it just needs to warm up a little it kicks into low gear - if it needs to warm up a lot it kicks into high gear. Two degrees is about the cutoff between "a little" and "a lot." The problem was that it was always kicking into high gear to warm things up "a little" (which wasted all the money we had just spent getting a furnace which could sometimes kick into low gear).

Enter, the macho furnace guys, who actually know very little about the product they just installed. They tell her to turn the thermostat up about 10 degrees. She does (since she didn't understand why that would not demonstrate the problem). It kicks into high gear - just as it should. No problem with the furnace (according to the furnace guys) and the furnace guys are peeved at being called out when there is no problem (a warranty call so no money in it for them).

My spouse proudly announces to me when I arrive home that there is nothing wrong with the furnace. I test it myself. Problem still exists. I ask her what they did to test it...she recites the 10 degree bump to the thermostat. She gets mad at me when I try to patiently (and then probably less and less patiently) try to explain why that would not have revealed the problem.

To be fair, she really didn't understand - but it was about 5 more years before I came to realize that. At the time I was just ticked off that she hadn't followed a simple instruction, wouldn't acknowledge that she hadn't followed it, and didn't have a clue why I was upset. The resulting emotional explosion ("Well, then, you just deal with it") meant that I had to take unpaid time off from work to wait for the furnace guys, who were even more peeved at being called out a second time.

Not related to my spouse, but the next day these brainless macho wonders puffed themselves up and backed me into a corner to explain to this "ditzy broad" that there was nothing wrong with the furnace. Fortunately, this "ditz" has a physics degree and called their bluff. Turns out the installers had deliberately wired the low gear and high gear together, since they had never before had anyone who actually wanted to use the furnace as it was designed (or never noticed that it didn't work that way). (The formal explanation is slightly more complex, BTW, but that's the 10,000 foot view I thought at the time that she should have been able to understand.)

Now I know better - but I still struggle with having her do the things she is capable of handling at an executive function level, but memory glitches might interfere with (rather than just doing everything myself). If I don't write out the steps, chances are something will be forgotten. If I do, I'm treating her like a child - which kinda fits with your explanation of executive function being the last thing to develop.

Qh well...I'm still learning this new dance. It's going to take me a while.
Anonymous
Posted: Tuesday, January 17, 2012 3:46 PM
Originally posted by: Neoh

quote:
Originally posted by jfkoc:
You might ask yourself why it is important that your wife recognize her illness. What would it matter? Her recognition will not enable her to improve and she may already be well into the stage that she can NOT recognize it. The one person you went to to solve/discuss a problem is not there anymore.


Mostly, it is not important - and during the 90+% of the time when it isn't important I just live in her reality.

It is important, at the stage when she is threatening to walk out of the doctor's office because she is pissed that he is 2.5 hours late and she really believes nothing is wrong so being there at all is a waste of time, let alone twiddling her thumbs for all that time. Similarly it may at some point be important for medical compliance (it is not currently an issue because she is still at the "doctor-god told her to take it so she does" stage).

It is/will be also at the stage at which she is really incompetent to practice law. She is borderline there already (although I have encountered others who are as bad without any dementia related impairment). She is still taking every case that comes her way - fortunately they are mostly small matters that can't go very far wrong. Her sister (she has not told any of her family) just brought a legal opening to her attention - one for which she would be particularly unsuited because of her loss of executive function. She still has a public presentation that might allow her to be hired, and her sister (employed by the potential employer) would be vouching for her (making it more likely she would be hired). IN addition, personally - the possibility of malpractice puts our shared assets at risk. Professionally, since I am also an attorney, the obligation to report conduct which violates the code of ethics may someday also puts me in a really tough position.

Nearly as challenging are situations like with our daughter's need for accommodations. She doesn't specifically need to acknowledge her impairment, but I also can't allow her to do what it would otherwise be natural for her to do rather than me - and that is to handle the case herself. Achieving the latter without explaining the former is something I haven't figured out how to do yet.
Anonymous
Posted: Tuesday, January 17, 2012 3:46 PM
Originally posted by: Cathy J. M.

I agree that shifting the type of brain exercises would be a good idea.

Also, it can be very useful to identify the person's preferred sensory modalities -- visual, auditory, kinaesthetic -- primary, secondary, teritiary -- and encourage development of the ones less relied upon. (This comes from Naomi Feil's work.) It adds some "reserve capabilities."

What about lots of aerobic exercise? This can have a very beneficial effect on brain functioning. (A Google search will turn up some evidence for this; am sorry I don't have time to provide it here.)

A perusal of John Zeisel's book, "I'm Still Here," will turn up some other encouraging approaches. I'm sorry I don't have anything specific to offer re. executive function.

I have noticed improvements in my partner's overall functioning since starting Namenda, but my partner is about stage 5 at least, and everyone responds differently to the medications.

I agree that what you'd like from the neurologist makes sense -- but probably very few specialists provide it.

Only other suggestions that comes to my mind (totally without any solid foundation) is to help your spouse develop some teaching materials, organizing content that she knows.

Does she know mind-mapping techniques? In a way this seems like the opposite of the kind of logical organization you'd like her to amplify -- but oddly enough I think it might help. It's a much different approach to organizing info, compared with outlining -- and it might work better for her.

I hope JAB will respond to this thread. She usually has some relevant studies up her sleeve.
Anonymous
Posted: Tuesday, January 17, 2012 3:46 PM
Originally posted by: Neoh

quote:
Originally posted by Starling:
Actually you got your diagnosis. Unless you think she has FTD, you've got what you can get.


I don't know - I know enough to know that both FTD and Lewy Body are not totally off the wall from a symptomatic perspective, and I also know that there is enough out there about dementia that I haven't begun to explore to expect that there may be other possibilities. I also know that AD presents in different ways, and may require different medication and/or non-medication therapeutic approaches.

I'm frustrated that this doctor's approach, particularly since she is still at an early stage when a more tailored approach might actually preserve memory and cognitive ability. His approach seems to be just to throw the two most common (but I don't believe only) medications at it rather than taking the time to evaluate her condition - specifically - and to create (and continuously re-evaluate) a treatment approach (which may involve far mroe than just medication) based on where she is, what form of dementia she likely has, how she is responding, etc.

quote:
Originally posted by Starling
One thing that might help during the MCI period (which is what they always seem to call the early stages of dementia) is cognitive therapy. My husband got his a bit too late, but what little he managed to keep hold of had him reading and writing his name until early stage 6. So I'm a believer.


That sounds interesting. My spouse is already doing a lot of the "right" things (exercise, reading, brain exercises, tutoring the neighborhood kids in math, etc.) Comprehensive speech therapy was suggested yesterday as a possibility - this sounds similar. The other piece I am exploring on my own is shifting the brain exercises. Her brain exercises have always been heavily focused in the numerical/number based logic arena - and it makes sense that she has had very little loss in this area. If I can identify more brain exercises in the executive function and language based reasoning areas they might be similarly helpful in slowing down the loss.
Anonymous
Posted: Tuesday, January 17, 2012 3:46 PM
Originally posted by: Neoh

quote:
Originally posted by howdy2u:

You may find it difficult to get him to pin down a more specific diagnosis than "dementia, probable Alzheimer's type".

Personally, I think they hesitate to go further with a diagnosis because then how it is treated becomes more important (LBD patients may not do well on AD meds, etc.).


That's actually my point. I'm not so much concerned with the label, as I am with using potential labels as a means of sorting what might work/not work to slow the progress of her dementia. I think the doc at least needs to be ticking through his mental list of dementias and making educated guesses as to what she might have and what might be helpful to treat that particular flavor.

I know it is going to be a trial and error process - and I know that there isn't currently any way to make a firm diagnosis prior to death. On the other hand, I don't want someone who expects to use a one-size-fits all response to a disease (or group of diseases) with this much variation and unknown.

quote:
Originally posted by howdy2u:Also, having to wait 2-1/2 hours in the waiting room is just unacceptable - especially when you are dealing with someone with dementia. I don't know what to suggest to work around it, because even if you called prior to ask if he was running behind I don't think the staff would tell the truth.


Our work-around is to nab an early morning visit for next time Smiler Apparently he's always behind. At the time we checked in, he was supposedly 3 patients behind. 2.5 hours would put him at around 6 patients behind by the time he reached us.

Aside from getting an early morning appointment - I'm not sure there is a good solution. To a large extent, the economics of insurance require that nearly every 15 minute block is scheduled with a patient. On the other hand, the fact that he doesn't just chase everyone out by the clock is usually a good thing. On the other hand, for kids and people with dementia (and I'm sure other groups, as well) the wait is really hard. There was a kid in the waiting room who arrived after us - don't know what his problem was, but he was really apprehensive about the crowd in the waiting room so mom spent most of the waiting time outdoors on the grass in front of the office. Good thing it was a beautiful day.
Anonymous
Posted: Tuesday, January 17, 2012 3:46 PM
Originally posted by: howdy2u

quote:
Originally posted by Neoh:
quote:
Originally posted by howdy2u:
This may or may not have been mentioned to you before, but because her biggest deficit is executive functioning and not so much memory, she may fit into the Lewy Body Dementia category. You may want to do some reading at this site - in the Online Community section, Discussion Forums, one of the first sections is called Symptoms and Diagnosis. The diagnostic criteria for LBD is listed there.

http://www.lbda.org/category/3438/symptoms.htm


Thanks. It is one of the things that I have run across - and certainly one of the things I would hope the neurologist would think to evaluate based on the test results and symptoms being reported.

When I have time, I will do more research raise it with the doc if appropriate - I haven't had time yet, he hasn't been energetic enough yet to bring it up on his own.


You may find it difficult to get him to pin down a more specific diagnosis than "dementia, probable Alzheimer's type".

Personally, I think they hesitate to go further with a diagnosis because then how it is treated becomes more important (LBD patients may not do well on AD meds, etc.).

You may get the standard line that a diagnosis cannot be made with certainty until death with a brain autopsy.

Also, having to wait 2-1/2 hours in the waiting room is just unacceptable - especially when you are dealing with someone with dementia. I don't know what to suggest to work around it, because even if you called prior to ask if he was running behind I don't think the staff would tell the truth.
Anonymous
Posted: Tuesday, January 17, 2012 3:46 PM
Originally posted by: Neoh

quote:
Originally posted by RHW:
This makes a lot of sense! My DH was a Marine Biologist and advanced level college and high school science teacher.

My DH has extensive neuropsych testing planned for Sept. 1st. They say it could take as long as 6 hours. I am anxious to see the results. I am not telling him about it until the day of the test and then just to alert him that we will be going to the Dr. I have found that this works better for him.


Yeah - teaching science at this stage would be a disaster (speaking as a former high school physics teacher). She teaches, but not a particularly academically rigorous subject area. She is entertaining, provocative (in a good way), gets kids interested in the field, and student grades in her class are only mildly dependent on performance on standardized tests (the only consistent complaint she gets is that she doesn't cover the material that shows up on the standardized tests).

More and more small glitches every year, but overall she enjoys it and it manages to muscle her way through the glitches.

Good luck with the tests - sounds like about the same set of tests my spouse had. I found the results quite helpful. Even on the tests on which she performed reasonably well, I could see the same kinds of subtle changes I was observing in real life.

You're at a different stage - but even though I was confident about what I was observing, I was still biting my nails waiting for the results. Up to that point, every professional I had asked had dismissed my concerns based on the mini-mental status test, or involvement in a PhD program (having to repeat classes, and ultimately flunking out was finally the concrete non-testing event the doctor identified as "black and white")

Thanks for the support.
Anonymous
Posted: Tuesday, January 17, 2012 3:46 PM
Originally posted by: JAB

Cathy, drug-wise, what Neoh is asking for is, I believe, far outside the realm of current knowledge.

Drugs that affect brain function typically affect one of the neurotransmission systems. Very little is known about the various neurotransmission systems, their components, how they function, where they are found, and how they affect human mental function and performance. And even less is known about how the drugs exert their impact. See, e.g.:
http://pharmrev.aspetjournals....ontent/full/58/2/162

Which regions of the brain and which types of nerve cells and types of neurotransmission are involved in executive function? Who knows? As far as I'm aware, the entire concept of executive functions was developed pretty recently, and is still very poorly defined.
http://en.wikipedia.org/wiki/Executive_functions

The people who posted earlier are correct: there are two types of drugs approved for treating Alzheimer's (and dementias which have related deficits in neurotransmission systems), i.e., the NMDA receptor antagonist Namenda, and the cholinesterase inhibitors (aricept, exelon, razadyne/galantamine). They do not treat "memory problems" per se -- they help the brain function better. Note that long-term studies on both types of drugs have found that their use helps prevent or delay the onset of serious behavioral problems, for example.

They target specific molecules in two types of neurotransmission systems. Namenda is thought to help by blocking glutamate binding to NMDA receptors and thereby reducing the glutamatergic overstimulation that may result in neuronal damage (excitotoxicity). The ChEIs help neurons that have certain types of cholinergic abnormalities, by inhibiting the enzymes that break down the neurotransmitter acetylcholine (and sometimes also butyrylcholine).

Where there are dysfunctions associated with these molecular targets in these systems in the brain, the drugs will have an impact. (When I say "associated with", I mean that the drugs do not necessarily bind to or affect the molecules that are actually malfunctioning. There's usually nothing wrong with the cholinesterases themselves, for example. For one reason or another, insufficient acetylcholine is released into the synapses. Slowing down the cholinesterase activity in effect lets what little acetylcholine is in the synapse to stay there longer and fire the nerve more often.) If the neurotransmission deficits are found in regions of the brain associated with episodic memory, such as parts of the hippocampus, then episodic memory may be affected and the drugs can help lessen the effects. If the deficits are found in other regions of the brain, the mental processes controlled by those other regions may be improved (or at least affected) by the drugs.

The different compounds that can bind a given target within a neurotransmission system may bind with different degrees of affinity, or in different locations on the target molecule(s), or exhibit different modes of action. Therefore, even if they bind to the same target, they can have vastly different effects. And just because a drug is known (if it is) to bind to one target molecule via one mechanism does not mean it won't or can't bind to many other targets as well.

Moreover, since different types of neurotransmission systems are intimately intertwined, what affects one neurotransmission system may ultimately affect others, one way or another, as well. Ergo, just because Namenda binds to NMDA receptors doesn't mean it won't, ultimately, have an impact on types of neurotransmission systems other than glutaminergic, even if it doesn't bind to any molecules within those neurotransmission systems.

Moving along...

Stimulants such as Ritalin and Adderall are being studied with regard to treating apathy in AD patients, which is an extremely common symptom. They affect the dopaminergic neurotransmission system (at least).

Drugs that are prescribed for patients with FTD primarily treat behavioral symptoms. For example, since serotonin binding is decreased in FDT, selective serotonin reuptake inhibitors (SSRIs) are often helpful for treating disinhibition-impulsivity, depressive symptoms, carbohydrate craving, and repetitive behaviors. The disorder is also associated with some reduction in dopaminergic function, but drugs to hypothetically help this type of deficit have not yet been well-studied. See, e.g.:
http://neuro.psychiatryonline....ontent/full/20/2/130

There are other types of drugs for targeting other types of systems that are in the experimental stage, of course. But for many of them, we don't even know whether they'll have an effect in humans, let alone what type.


I suppose it's possible that some of the "brain training" software being developed for dementia patients may help "exercise" regions associated with executive function. I don't know, I haven't really looked into them. There's Nintendo's Brain Age series, Posit, Ashby Memory Method, CogniFit, and Dakim BrainFitness, that I know of.
Anonymous
Posted: Tuesday, January 17, 2012 3:46 PM
Originally posted by: Neoh

quote:

drug-wise, what Neoh is asking for is, I believe, far outside the realm of current knowledge.


What I'm really looking for is a physician who is on the ball enough to know the gender of his patient, whether or not he started her on meds several months ago, where her deficiencies are, and who is willing to actively consider doing something other than just throwing the traditional meds at the problem without paying any attention to whether there might be additional or better options for treating the particular manifestation of dementia she has. Drugs, and true knowledge (i.e. confirmed by scientifically valid methods) are a very small part of that - particularly since there is far more unknown that known about AD and other forms of dementia.

As to the use of Ritalin - two people independently recommended it to me. Both are practitioners - one is, I believe, an MD/PhD whose neuropsych practice is primarily geriatric patients with dementia, and who regularly prescribes ritalin for his patients with executive function impairment. The other is a child psychologist (PhD) who is taking ritalin for her own executive function impairment - and who also treats children with ADHD.

My reaction to the first person who suggested it (the child psychologist) was to dismiss it with a polite nod, but when the second person - whose primary practice is people with dementia - independently made the same suggestion, to treat the same thing, it got my attention, and it makes me suspect it is not as far out in left field as I initially thought. Here's one article which discusses it briefly: http://www.ncbi.nlm.nih.gov/pubmed/18266665 ("EF" in the abstract refers to Executive Function). My very cursory research suggests that doctors who prescribe it in connection with impaired executive function are following one of two trains of thought (1) an observation that grew out of its trial use to treat apathy, which seems to have also resulted in improved executive function and (2) the fairly extensive overlap between ADHD (for which Ritalin is an accepted treatment) an diminished executive functioning; if the two are related perhaps what works to treat one will also help the other. Different portions of the Wisconsin Card Sorting Test are actually used in evaluating both ADHD and executive function.

I am grateful for the support of the people in this forum who have acknowledged that I am not being unreasonable in hoping there is more out there than my spouse's physician seems to be offering - and frankly am somewhat surprised at how many seem to have just given up and accepted that popping one or both of the two standard classes of drugs is the best that we can/should be hoping for for our loved ones.
Anonymous
Posted: Tuesday, January 17, 2012 3:46 PM
Originally posted by: Neoh

quote:
Originally posted by howdy2u:
Neoh, I hope you get a more specific diagnosis - we were never able to. It was always termed as probable Alzheimer's before she was placed.

After she was placed, the geriatric psychiatrist at the NH said he felt it was vascular dementia. At that point, it wasn't so important to me to know and we had taken her off all her AD meds anyway.


It is only really important to me because it might give us clues as to what treatment might best slow down the progression (or if we really hit the jackpot - halt it)

I hope you found a good place for your mom. A friend of mine whose mom and several relative had EOAD found a place for her mom that catered to people with AD and really loved it. Unlike so many people with AD who beg to be taken home from the nursing home, her mom begged to go home to the nursing home - and according to my friend that was the norm rather than an exception.
Anonymous
Posted: Tuesday, January 17, 2012 3:46 PM
Originally posted by: jfkoc

JAB...A big thank you but not Dementia for Dummies. WOW If someone would tell me how to print out the info from JAB I would appreciate it. It will take some serious effort to absorb it.

Bless all of you for all your help.
Anonymous
Posted: Tuesday, January 17, 2012 3:46 PM
Originally posted by: howdy2u

Neoh, I hope you get a more specific diagnosis - we were never able to. It was always termed as probable Alzheimer's before she was placed.

After she was placed, the geriatric psychiatrist at the NH said he felt it was vascular dementia. At that point, it wasn't so important to me to know and we had taken her off all her AD meds anyway.
Anonymous
Posted: Tuesday, January 17, 2012 3:47 PM
Originally posted by: howdy2u

Neoh, I know for me I gave up because I was tired. I took care of my mother 24/7 for 2-1/2 years (and handled lots of things for her for years prior to that) and between cooking, feeding, bathing her and being up and down all night with her along with a full-time job, I just couldn't face any more doctor appointments.

It didn't help that we had run out of her money and my money (including my own retirement money).

I also have developed a rather bleak outlook on the treatment of dementia, and really all I hope for is that her last stage goes quickly and without any suffering for her.

I did find a WONDERFUL NH for her and the staff is like family to her. I am there 4 times a week and they take such good care of her there - far better than it was when it was just me trying to do everything.
Anonymous
Posted: Tuesday, January 17, 2012 3:47 PM
Originally posted by: Neoh

quote:
Originally posted by Cathy J. M.
Only other suggestions that comes to my mind (totally without any solid foundation) is to help your spouse develop some teaching materials, organizing content that she knows.

Does she know mind-mapping techniques? In a way this seems like the opposite of the kind of logical organization you'd like her to amplify -- but oddly enough I think it might help. It's a much different approach to organizing info, compared with outlining -- and it might work better for her.


All good ideas - some she is already doing (aerobic exercise - we go biking regularly, and she has started swimming) and others subtle shifts from what she is doing - "exercising" the areas of her weaknesses, rather than her strengths.

Haven't heard of mind-mapping, so I'll have to look into it.

As to teaching, that is still the one really bright spot for her. Her first classes were this week, and she is really excited about them (as she always is at the beginning of a new semester). She spends a lot of class time provoking good class discussions, which doesn't take an incredible amount of organizing. As long as she has an idea for each class, she can usually keep the discussion going. Today's topic was cyber-bullying. I'm hoping her ability to be "on stage" hangs on for quite a while, in part because it is one of a couple of areas I can be really excited, and offer unqualified support for. I have some nagging fears about how long it will last because I have noticed a subtle shift in "off stage" interactions in the last year or so - more disengaging from interpersonal interactions. Going off and sleeping more in the middle of events (sometimes literally in the middle of the event), and wandering off rather than engaging in conversations.

But - today I got to listen to happy chatter about how wonderful her new classes are, so that makes yesterday a little easier to live with.
Anonymous
Posted: Tuesday, January 17, 2012 3:47 PM
Originally posted by: RHW

Seems almost too simple to ask.... but why don't you change Doctors?
Anonymous
Posted: Tuesday, January 17, 2012 3:47 PM
Originally posted by: Neoh

quote:
Originally posted by RHW:
Seems almost too simple to ask.... but why don't you change Doctors?


In almost any other set of circumstances we would switch doctors - typically, I don't tolerate incompetence since my family has already suffered too much personal injury at the hands of fools who happen to have MDs attached to their names. We've fired three doctors within the last 10 years, two of whom caused permanent injuries to our daughter.

In this case, I've been struggling to get my spouse to a doctor for six years. The first neurologist dismissed my concerns because my spouse was in a PhD program - she may have had to repeat a class at that point, but that was the only "objective" data I had. The doc's response was, "how bad can it be - she's in a PhD program?" Since then, I have asked, or had her ask, our primary care doc about my observations. He asks her what day it is, who the president is, and dismisses my observations. All of this has reinforced her belief that nothing is going on (not that she needed any reinforcement). Our primary care doc almost didn't refer her to a neurologist after the testing - he and I have since had a very blunt conversation about just how hard the last few years have been getting to this point, and how concerned I am that she might take his discouragement as permission to drop out of treatment.

My spouse finally consented to go to neuropsych testing - we lucked into a really wonderful, thorough, woman. She recommended this doctor - an MD in the same practice. Based on how thorough her evaluation was, I really expected more from the doctor she recommended.

At this point (and maybe forever) my spouse is completely unaware that she is slipping away - and is still only humoring me by going to the doctor. She takes her meds because she typically does what the doctor tells her, without question. Her good humor (which never was very good on this issue) is wearing thin - and I'm really afraid that if I suggest switching doctors it will be years down the road before I get her to agree to see someone else.

I figure we have another six months or so of trying the combination of Aricept and Namenda to see if that works. I hope, during that time, to be able to do some more research, get other family medical issues calmed down some - and if I'm still not happy that might be a good time to start exploring someone new.
Anonymous
Posted: Tuesday, January 17, 2012 3:47 PM
Originally posted by: jfkoc

First of all thanks for the printing info.

Next...Noeh,try the Ritalin. Do you follow John's Hopkins online?

I agree with your perception of acceptance shown in the messages BUT acceptance does not exclude hope and many of us are determined to leave no stone unturned. Your continued questioning about treatment is valuable to all of us. You remind me of the father in Lorenzo's Oil.

Please continue to "rage at the night".
Anonymous
Posted: Tuesday, January 17, 2012 3:47 PM
Originally posted by: Iris L.

quote:
Originally posted by Neoh:

With my daughter's disease, there is a lot of talk in the much smaller community of patients and caregivers about designer treatment - tailoring the management of symptoms to her particular needs and responses .

I'll have to go back and look, but it seemed to me that in response to earlier postings (or in other threads) there was a lot more of that flavor - the importance of finding a doctor who was willing in the early stages to find the best (likely at least somewhat individualized) way to extend the period of relatively high functionality .

I suppose it may just be timing, with the announcement last week of another drug trial being terminated because the results were the opposite of what was hoped for - but the responses in this thread seem to me to have a much stronger feeling of "nothing works - just get used to it " than earlier threads.


Welcome to my world. On our boards ("I have AD" and "I have AD under age 65") we talk all the time about the lack of dedicated treatment for dementia patients, other than the standard drug therapy, if patients even get that. A few have gotten cognitive rehabilitation therapy, through a stroke department. Most don't even have that. In my case, I had three months of out-patient cognitive rehab. The rehabilitation doctor then recommended in-home cognitive rehabilitation therapy, but she also told me I didn't have to come back to see her. She's done with me. And I don't even have a diagnosis of dementia or AD!

Most of the younger and early stage patients are struggling with their job performance. It's a huge problem for us patients and family members but the doctors are unconcerned and seemingly uncaring about that.

Have you read the book "Still Alice?" It's a novel, but it's a realistic portrayal of the early symptoms and development of AD from the viewpoint of a university professor, like your LO.

Eventually, despite her conversational skills, her difficulties with her job performance will become more obvious to others. They will ponder, Is she drinking? Is she on drugs? Problems at home? They will NEVER think of early dementia or MCI or impaired executive functions. Nobody knows about this except the AD community. Read the chapters about the students thoughts about their professor.

Here is some advice, not from me, but from dementia professionals:

"Stage 3 Figure 3
Mild memory impairment
Other MCI subjects may manifest concentration deficits. Many persons with these symptoms begin to experience anxiety, which may be overtly evident.

The prognosis for persons with these subtle symptoms of impairment is variable, even when a select subject group who are free of overt medical or psychological conditions which might account for, or contribute to, the impairments are studied. A substantial proportion of these persons will not decline, even when followed over the course of many years. However, in a majority of persons with stage 3 symptoms, overt decline will occur, and clear symptoms of dementia will become manifest over intervals of approximately 2 to 4 years. In persons who are not called upon to perform complex occupational and/or social tasks, symptoms in this stage may not become evident to family members or friends of the MCI patient. Even when symptoms do become noticeable, MCI subjects are commonly midway or near the end of this stage before concerns result in clinical consultation. Consequently, although progression to the next stage in MCI subjects commonly occurs in 2 to 3 years, the true duration of this stage, when it is a harbinger of subsequently manifest dementia, is probably approximately 7 years.

Management of persons in this stage includes counseling regarding the desirability of continuing in a complex and demanding occupational role . Sometimes, a ‘strategic withdrawal’ in the form of retirement, may alleviate psychological stress and reduce both subjective and overtly manifest anxiety."

This is taken from The Stages of Alzheimer's.
http://www.alzinfo.org/clinical-stages-of-alzheimers

BTW, if you want a designer treatment, YOU will have to devise it and present it to the doctors for them to implement. They will probably go along with your proposals, because they have nothing much else to offer. Except to get into a clinical trial. But I don't think your LO is ready for that.

The best place for you to be right now is on the pages of this board. Only the members here know what to do and how to encourage you. Good luck to you.

Iris L.
Anonymous
Posted: Tuesday, January 17, 2012 3:47 PM
Originally posted by: Starling

Cognitive therapy is done by speech therapists who work with stroke victims most of the time. Different words, same people.

It sounds more and more to me that might be what she needs.

Also, you can not fool them. If you have a LO who is presenting to the general public a lot healthier than she actually is, the cognitive therapist will know where she really is.

And if occupational therapy is appropriate, she will know that too.

Noah it sounds to me like you are at the stage in this disease where you are looking for ways to "FIX" your wife. There is no cure. All dementias, no matter which one she has, are fatal. There are ways to make life more comfortable and slow down symptoms, and the two drugs the doctor is talking about are the ones that usually work, not just for memory loss, but for what you are calling executive functions and even physical functions.

And on the subject of printing out messages:

You can print out messages. If nothing else you can highlight what you want to print out. Hit Ctrl-C to copy it. Open a Word Processing document. Hit Ctrl-V to paste it into the document and print out the document.

You can keep a word processing document and save all the copy and paste messages and print them out together or keep a notebook with each message on a separate page.

Depending on your browser, you can do the highlight thing, open Print Preview and see if only what you highlighted is there and then print that directly from the browser.
Anonymous
Posted: Tuesday, January 17, 2012 3:47 PM
Originally posted by: Neoh

quote:
Originally posted by Starling:

Noah it sounds to me like you are at the stage in this disease where you are looking for ways to "FIX" your wife. There is no cure. All dementias, no matter which one she has, are fatal. There are ways to make life more comfortable and slow down symptoms, and the two drugs the doctor is talking about are the ones that usually work, not just for memory loss, but for what you are calling executive functions and even physical functions.


Thanks for the clarification as to speech therapy/cognitive therapy.

Fix would be nice, but not likely. It would also be nice to have a fix for my daughter who is in the same boat with a different disease. Like dementias, there is no cure and the individual progression toward the inevitable endpoint is highly variable. With my daughter's disease, there is a lot of talk in the much smaller community of patients and caregivers about designer treatment - tailoring the management of symptoms to her particular needs and responses.

I'll have to go back and look, but it seemed to me that in response to earlier postings (or in other threads) there was a lot more of that flavor - the importance of finding a doctor who was willing in the early stages to find the best (likely at least somewhat individualized) way to extend the period of relatively high functionality.

I suppose it may just be timing, with the announcement last week of another drug trial being terminated because the results were the opposite of what was hoped for - but the responses in this thread seem to me to have a much stronger feeling of "nothing works - just get used to it" than earlier threads.
Anonymous
Posted: Tuesday, January 17, 2012 3:47 PM
Originally posted by: Neoh

quote:
Originally posted by Iris L.:
Welcome to my world. On our boards ("I have AD" and "I have AD under age 65") we talk all the time about the lack of dedicated treatment for dementia patients, other than the standard drug therapy, if patients even get that.

Have you read the book "Still Alice?" It's a novel, but it's a realistic portrayal of the early symptoms and development of AD from the viewpoint of a university professor, like your LO.


. . .

The prognosis for persons with these subtle symptoms of impairment is variable. . . However, in a majority of persons with stage 3 symptoms, overt decline will occur, and clear symptoms of dementia will become manifest over intervals of approximately 2 to 4 years. Consequently, . . . the true duration of this stage, when it is a harbinger of subsequently manifest dementia, is probably approximately 7 years.


Thanks for the encouragement - I hope that my own health problems are finally coming to an end, and that my daughter's will at least enter a quiet stage, so that I have time to do the research I need to do. (I love being the doctor's first surgical failure... it took quite a bit of research and conversation before he acknowledged it, and I have my fingers crossed that this second surgery isn't a failure - but at three weeks it is still too son to tell.)

I read "Still Alice," informative - but pretty overwhelming because the decline was so rapid. Fortunately, my spouse's decline seems much slower so far. Eventually, I suspect the "on stage" persona will fail. So far, with respect to teaching, there are mostly only back stage stumbles, and mostly she generates a good enough rapport with her students that they feel comfortable asking her about her occasional "on stage" stumbles - as happened with grade distribution last semester.

If the timing noted above is accurate - we are probably nearing the end of this stage. She was fired from her last full time job about 6 years ago. My assessment is that her impairment didn't cause the termination, but it did make it harder for her defenders on the board to stand up to the board president who was intent on firing her - because the board president had been able to compile an array of relatively minor (but cumulatively impressive) failures to follow board direction/less than ideal administrative decisions, memory glitches, etc.

As to anosognosia, it was such a relief to realize that she was not just being obstinate. I had such a hard time believing that anyone as intelligent as she is couldn't see that her thinking was incoherent or that her memory was not working as well as it used to. Realizing that it was not denial, but a true innocence of what was going on, also made me feel guilty because I had been working so hard to point it out to her to convince her to be evaluated and address whatever was going on - and it simply wasn't anything she was capable of understanding. I guess in retrospect, though, I still can't think of anything different to do.

Most of the time it makes it easier for her now - sometimes ignorance really is bliss.
Anonymous
Posted: Tuesday, January 17, 2012 3:47 PM
Originally posted by: lurk

Wow, aren't the people who visit this forum smart? On just this one thread, we have had an amazing message from JAB, an amazing message from Iris, and to boot, we have learned how to print out the messages which I need to do as I could never absorb all of that information.

Neoh, I just read an article in the latest Popular Science magazine about designer medicines. A quote, "Because the approach is fundamentally simple, RNAi therapy could be ready within two years . . ." It's always down the road, but you and I and the others will still be here in two years. I admire your persistence, and I believe if anyone can get the results you desire, it will be you.
 
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