When I was first diagnosed, I spent hours a day on the Internet studying this stuff, and usually a book or two I was reading, also.

Never got tired of reading about any kind of dementia. A lot of it didn't stick, so reading the same thing over & over wasn't a concern. I took what I was learning, and talked about it with therapist friends and my actual therapist, and my physicians.

Now, not so much. Many times, I look at the sites' addresses, but instead of clicking on them I just give a little sigh, and do something else.

I'm not more depressed or anything negative like that. I actually feel alright, most of the time, i.e. I think I've made some gains in accepting what's happening to me.

Anybody else have, or know of someone having, a drop-off in personal research?

Yes Alan,

I know what you mean. There's a little bit more of acceptance now. I guess that's what it is? I'm not quite so frantic anymore for info. It is what it is!

Is this what you are talking about?
I,also, know I'm having more trouble reading/retaining.

quote:

I,also, know I'm having more trouble reading/retaining.

I reached a point, I think sometime last year, when I realized I often didn't retain anything I'd read a particular afternoon. I almost quit reading. But then, I figured that I still enjoyed it, and sometimes things would stay in my mind a while.

Yeah, I think it's some acceptance. Two or three years ago, I was determined to never accept it, to always fight. Slowly, so slowly, I've come to realize that always having a fighting attitude wasn't necessarily the best path. Especially with a disease that's 100% terminal. So, on to Bargaining, and a little Acceptance.

Well, Alan

I agree with you to a point. I think we still need to fight this monster but perhaps not so much and so often.

Having some acceptance is a little freeing in a way. It allows me to have a multitude of feelings without them all being so intense. Some intensity is good and necessary but not all the time. It wears me out.

Unfortunately, reading still angers me so I don't do a lot of it. But, my daughter is coming in Friday and I LOVE when she reads to me!

I look forward to her visit and seeing my SIL and grand dog, Turtle.

Alan and Lisa,

As far as I know I do not have EOAD. I have been a caregiver to my Mom with AD for the past seven years. She is now in a NH and in the last stages of this horrid disease.

I lurk here now and again to gain some insight into Mom's world. I have read many of your posts and learned a great deal. Thank you for sharing with all of us.

I wanted to respond to this issue as I feel I too, reached a point where the research, drug trials, etc. wasn't as important any more.

It's not because of Mom's deterioration, it's more because it became time for her to live the best life she could. Maybe it's acceptance, but knowing the final outcome just heightened the need to live well and enjoy each and every moment she could.

I wish you both the very best and again, thank you for all your sharing and knowledge.

Patty

Patty,

We must have been posting at the same time.

Thank you for sharing about your Mom.

Acceptance is not giving up!

Ditto on what patcor has said.

When I finally got a computer and learned how to use one fairly well, life was and still is to some extent, researching, reading and living my life around AD. With all the new research and supossed helpful meds, gadgets and supplements popping up almost daily, I just seem to get summoned to continue looking for something, anything that will help and make life easier for mom and myself.

But I also came to realize that this in itself was starting to occupy my life, time and even fry my brain at times.

So we have to step back, live life in other ways, take time to stop and smell the roses.

http://tinyurl.com/y9lbjle

Alan,

I've done a lot of reading and researching on the internet. First, with my father and then myself.

I no longer research dementia, dementia studies, etc.

Acceptance, perhaps. It felt futile and wasn't productive so I quit. Not interested, nothing out there can help so why keep getting reminded of a negative.

I try to take each day as it comes, some days I do better than other days.

I'm working on my bad days...how to be charmingly grumpy.

Cindy L,

What a great way to say it "charmingly grumpy!"

I think I tend to live that way myself but I am working on feeling better than that!

Good Luck.

I'm still trying to figure out what it is that I have, so I still have to do research on the internet. I'm not interested in reading any long articles however. I used to download a lot of articles. Now I just read them online and note the url.

I bought a newly published book on AD 6 months ago and had it autographed by the author. I still have not even opened it.

I like to read the message boards. Most of my education is from the message boards, the chat room and the Alzheimer's Library. My interest in these locations is still very high.

Iris L.

quote:

Originally posted by Alan in Colorado:
I think I've made some gains in accepting what's happening to me.

Anybody else have, or know of someone having, a drop-off in personal research?

Hey Alan,
You and I must be in the same boat with you up in the bow about a year ahead of me. Our professional careers were rewarding and we conti nued to learn and improve. Then came the disease! We continued on with our normal life style as long as possible until it became depressing to know that we can no longer read or even comprehend as well as before. For a long time we let that anger us.
Making the transition from anger to acceptance has been a hard fought battle. The Seroquel helps but we still need to allow our selves to make the shift. Being angry means that we think that we have a chance to change and that is hard to drop. A drop off in personal reseacrh is a reaction to acceptance of what we know the bottom line will reveal!

Hi,

The bottom line is death! I'm ok with that. I'm not always ok with what is in between!!!

The bottom line is death? That reminds me of a scene in Star Trek: The Next Generation. I'll assume you all know the main characters. I like what it implies about death.



Piccard and Q are in a place of white light, existing outside of our universe's space and time. Piccard thinks he has made a horrible mistake, and is dead.

But Q just said something, what was it, something that made Piccard think otherwise.

Piccard said, "Wait a minute - - you saved me??" Q, "Yes."

Piccard, "You mean I'm not going to die???" Q, "Of course you are . . . but not today."

Star Trek:TNG will begin on the CW channel at 12:300 am.

Iris L.

Love it, Alan! I didn't see that one!

Iris,
When is Star Trek?

I love to read even though I forget most of it.Who cares I can still enjoy..........

Snowy, that's it!! You said it perfectly for the both of us.

I wish I understood what y'all are talking about being able to read and then it's ok to forget.

When I read, after reading a few lines, I forget so I can't seem to continue the train of thought therefore the story or article.

Is that what happens with y'all???

I can't read much more than one of these posts!?

I understand what you are talking about Lisa, I have a lot of trouble understanding a lot of the posts let alone trying to read something like a book. I get to frustrated.

Cheri B,

Thanks for answering me. I'm glad you understand what I mean. I can't read a book anymore. I would LOVE to read a book. It used to be a passion of mine! It is such a great loss!

I didn't know if anyone knew what I meant.

Thanks again.

Star Trek:The Next Generation will show at 12:30 am in Los Angeles area on the CW channel.

Iris L.

Upon further review, I confirm that I, too, have trouble with a book. I haven't read a fiction book since . . . ? Sometime last year?

In a similar vein, I don't watch movies that I can't rewind.

90% of my reading is on the web. Little chunks of information from all over the place.

What I've noticed in regards to reading...

I still read but at a lower reading level then previously. If I had to guess I would say it's about 6-8th grade reading level.

A book of 150 pages can last for a couple of months.

So instead of reading several books a week I have found one cost saving measure with my dementia.

When I was a kid I used to think going blind would be the worst thing that could ever happen to me. Probably a good thing I didn't know about dementia.

Some nights I read the same lines over and over again.

I use to love to watch movies. Now I have a hard time because I get to a point where it's like walking in on a movie part way through and you can't quite catch up on the plot of the movie over and over again.

Cheri, I remember when I lost the ability to enjoy going out to a movie: It was the Batman movie, "The Dark Knight." Just like you describe it, there came a point in the movie where I didn't know what was going on. I tried to stay focused, to figure it out, but it was no use. I tried another movie shortly thereafter, don't remember what it was or anything about it.

I'm thinking I might try Netflix, but I'm not willing to risk the frustration just yet.

Reading, the biggest change is how slowly I read now. Where I can tell the difference is when a tv show flashes some information on the screen for a few seconds, then moves on. I almost never finish reading the screen.

Reading for me is done slowly now and it bits and pieces.

As for movies, well, I watch TCM and maybe even AMC (although I hate commercials). I do some netflix here and there but not much else.

Television is not much fun or interesting anymore!

I'm a so-called normal and I couldn't follow much of Dark Knight or Startrek (excuse the story for 20 minutes while we need for some reason to fistfight on the wing of a ship??!!)

I think comedies (or musicals) might be easier viewing since each scene-- if it's well-done-- should be satisfying in itself. (ps Musicals could be Pink Floyds The Wall or Woodstock or ??--doesn't have to be Singing in the Rain-- not that there's anything wrong with that!)

quote:

Originally posted by Lisa 428:
When I read, after reading a few lines, I forget so I can't seem to continue the train of thought therefore the story or article.

Is that what happens with y'all???

I can't read much more than one of these posts!?

Hey Lisa,
That is exactly where I am. There are even those posts that are too long for me to comprehend. Sometimes when I get through the second sentence I need to start over. That is part of why I can't work any longer!

I know this may sound silly, but I have found movies and shows with loud and/or weird sounds in them get me really iritated.

I use to be a really big old movie buff, but now I watch reruns of the same shows over and over. I must have seen every episode of all the Law and Order and CSI shows about a hundred times. They are familar sounds and don't bother me. They keep me company when I'm home alone which is all day long.

New stuff is very hard for me to watch.

It takes a lot of optimism for me to try a tv movie. I can do it if my darling wife is there, to explain things to me during commercials as needed.

Cheri, I'm much more sensitive to sound that I used to be. It's a hit or miss thing though, as sometimes a big gunfight on screen is exciting, and sometimes it's time to turn the tube off and enjoy the quiet.

And of course, level of interest counts a lot. My tolerance for political stories is very low, but sci-fi and horror have a chance to hold my attention.

How you are functioning is not silly, Cheri. Being sensitive to sound is part of your illness. It's just how it is.

We have enough trouble being disabled without feeling embarrassed by symptoms.

Iris L.

[QUOTE]Originally posted by Alan in Colorado:
It takes a lot of optimism for me to try a tv movie.

Wow - Got me thinking about my activity/concentration level again Alan. I did not realize that I have not sat down and watch a "movie" on TV in probably well over a year. I don't even put them on and try. Seems I know - it won't happen.

I do however have the TV on from the time I get up till I go to bed. I think it is company. I seem to be satisfied with walking through the room and sitting down for 10 mins in the middle of something then getting up and going on about my business.

I watch very little regular TV. Desperate Housewives, Grey's Anatomy. That is about it. Lots of HGTV, TLC, History Channel, stuff like that. You don't have to really keep track.

Also interesting is that those shows will come on several times during the week or so. I will put the same episode on and watch again. It is like Hmmmm. this is familiar. Have I seen this one before? Not sure, ok. Leave it on and spot watch again. Same thing with Magazines. I will look at the same magazines 3/4 times and not remember if I saw it or not. I now mark on the outside so I will get rid of it.

Lynn

Lynn

Hi everyone, Boy I can relate to what you're talking about. How about when my husband uses the remote and changes the channels over & over. I have to ask him if we are watching the same show. He trys to understand but he'll never know what it's like to not know where you are.

Barbara

I have to laugh, but I can be watching something totally ingrossed in it, show goes to commercial, someone walks through the room and asks me what I am watching ....... I have no idea! Can't remember if it was a drama or cartoon.

But then again, I could not remember my 2 dogs names the other morning when they jumped up on me to ask to go out. That is the way it comes and goes.

Lynn

Lynn I know what you mean about having the tv on for company. Every since I was about 18 I've had the tv on 24/7...company during the day and to keep me from being scared when I was a lone at night. You don't hear the scary noises with the tv on.

At one point my second husband had to start leaving the remote in my hand when I slept because if you took it out I would wake up and not be able to go back to sleep. I don't have to have the remote in my hand to sleep anymore, but my husband is gone on business so much I still need the tv on to sleep. Doesn't matter what is on, just as long as there are people talking or normal noises.

Lynn, I've gotten to the point that I have to put a checkmark on the front page of the newspaper to let me know I have read that day's edition. Otherwise they pile up because I think "I haven't read today's paper yet."

Iris L.

Hi Iris,

Good idea. You know, I just try and keep a good humor about it and figure out how to get around it. It seems now that much of my memory issues or lack thereof are come and go things. Like forgetting my dogs names the other day. I kept looking at them and there was just a black hole or void in my mind. It surprised me. I just kinda thought ok, it will come back to me. Of course my dogs don't care what I call them as long as I don't call them late for dinner. LOL!

It is when I put pressure on myself to remember.... NOW..... IMMEDIATELY, and then beat myself up that I can't remember (and won't let it go) that I get into serious head troubles. I think that is why we all like to hear that others say, do, & think (or not) the same things. It says we are normal for us with AD.

Lynn

quote:

It is when I put pressure on myself to remember.... NOW..... IMMEDIATELY, and then beat myself up that I can't remember (and won't let it go) that I get into serious head troubles. I think that is why we all like to hear that others say, do, & think (or not) the same things. It says we are normal for us with AD.

Lynn, yeah, that's it! Humor helps, but there are times I don't have a sense of humor. Sometimes I just stare inward, at that long downhill road ahead of me.

Good humor is abundant between the hours of 11am to 4pm, maybe 5. "Al" is in the house at other times and nobody knows what to expect!

I understand what you are saying. Humor is great, but it won't always be there. You are evidence of that. You all have changed as you passed through the stages. I think that is the one thing that worries me. Basically losing the "essence" of me. The who, what, and spirit of Lynn. I hear what many of you are currently experiencing. Anger, depression, the sense of loss or hopelessness. I think that is the stage of grieving that goes along with this disease.

I am not there yet. I dread the day!

Lynn

Lynn, most people are surprised at the quality of life they can have, even with a troublesome diagnosis like Alzheimer's. For most of us, there will be some decent years after diagnosis. We can still have friends, probably still can enjoy most of the same things as before AD.

It's my nature to stare into the dark, to have to know what's going on. But there's a lot to be said for "therapeutic Denial," just take on the day as though we're really doing pretty good.

As for losing myself, I wonder about that sometimes. I wonder what my experience will be, my awareness of myself and my circumstances. I'm aware that there are times now when I'm not so hot, I guess what's usually called sundowning. So, all the more reason to be happy when I can. I'm not always open to that, but that's my goal.

Hi Barbara,

I sure know what you mean when the guys channel surf or what 2 or 3 things at the same time. I'm lost with just one.

My ex used to watch several things at the same time (especially ball games)and it drove me crazy then too!

I don't watch much tv anymore.

Hang in there!

Lisa, I watch less than half the tv I did a year ago. And, sad to say, channel surfing 3 shows at once is no longer an option . . . can't keep up with any of the story-lines, and I get real aggravated.

I watch one thing, and mute the sound during commercials.

If I lose track, it's best to just stop. I can usually find it the next day on the Internet, and watch it with pause, rewind, the tools of successful watching.

Alan,

I know what you mean. I watch very little TV these days and MUST mute all the commercials. They aggravate me so much!

Unfortunately, I don't usually find things on the internet later so I just miss out! My internet skills are limited too.

How's your anger doing? Any new meds?

Alan...I never thought about muting the commericals. Thank you, I've had a hard time with them. Seem especially at night when you turn the tv up to be able to hear the show, they blast you when the commercials come on. I've been changing channels to a different program during the commericals, and then forget what I was watching and loose any hope of knowing what was going on with any of the programs.

Cheri, that's my tv problems exactly! I can't enjoy a 2 hour movie anymore, I lose track. But I can usually handle a one hour, if I watch only that & mute the commercials.

Hulu is a good site for catching re-runs. I use it, so I can watch "House" on Monday night, which is opposite that silly show "Heroes," which I watch on Hulu the next day.

www.hulu.com

Just put the name of the show in the "Search" window.

Lisa, no new meds, don't want any for now. I'm a month out from my SSDI hearing, and I don't want to be unstable going into it.

My anger, currently manageable. Since my last supernova, I've slept a little longer, stayed away from sugary things, and been relatively stable. For now, my problems are clearly tied to brain fatigue, and that can be avoided better if I use some self-discipline.

Lisa, how's your rage-o-meter lately?

Alan,

Glad to hear things are manageable.

Self discipline did you say?? What's that??

My rage ranges from low to high still although I think the depakote is helping me sleep a little better and that may help (I hope, I hope).

I seem to be having more problems with loud sounds (it doesn't actually have to be too loud but it seems loud sometimes) and that visual-spatial stuff. Took a spill on my new bike and I'm paying a heavy price!

Alan, the point of an SSDI re-evaluation is to show then exactly how unstable you are. People with a hidden disability don't look sick so they are at risk of being found "no longer disabled" when they still are. That happened to me. I had to appeal and go through a lot of drama in order to get my SSDI benefits re-instated.

Please make sure your doctor's notes document exactly how unstable you are, meaning that you still meet the criteria for your diagnosis.

I'm glad you've attending to your blood glucose and doing better.

Iris L.

I know what you all mean. By the time I read all the post I had forgotten what I was to reply about in the orginal post....So I started reading over again.I was the same. I googled everything Alzheimer's.I learned if they discover the cure now, it will take 6 years to make it to market. Yes it is a market.Clinal trial phaseI,II and III.A flu for pigs comes along threating to kill 30,000 and three months later we accept shooting up our children and everyone with an almost untested vaccine that was invented last month.Let's not accept it! Let's lobby congress to fast tract the cure for Alzheimer's to us.5.5 million of us need the cure right now.We would gladly trade NASA going to Mars for it.Oh there will be a risk but an acceptable one. I didn't give up looking for the cure to Alzheimer's.I work with people who have this disease and I write for them. Do not give up yelling for a cure! Not only to slow it down but reverse it.Be an Advocate.Be a Champion.Write congress.In the mean time Try the safe alternatives...If I had Alzheimer's I would eat liver if I heard it may help with memory.Whatever happened to the cinnamon and the extra virgin coconut oil.Methylene Blue?
http://www.tahoma-clinic.com/lithium1.shtml
I save everything I find.Even one website that claims to cure Alzheimer's with lithium.
http://www.wrightnewsletter.co...XjrJ0CFQog2godJD-yyw
And this one claims Alzheimer's Disease is reversible.
http://www.cancerx.org/alzheimers-article.html
You might even try out the chinise herbs for Alzheimer's. Mine you these are not your everyday hippy herbs. These people are Doctors. http://www.hnmrc.net/pd1057901..._mrJ0CFQ9fswodNExiiQ
I wish I could hear from someone that finds something that works so I can share it with my buddies that do not have 5 more years.Do not accept it find and demand a cure NOW! Dang! . Praying for you All! Marcus

Hello, hoopydydoo, Welcome to these message boards. I don't know if you have scrolled down to the see the Medications forum. There are many discussions about different drugs and other treatment modalities for AD there.

I hope to see you in the chat room soon.

Iris L.