Hi to All,

I've spoken with several people with EOAD/YOAD about the 2 year mark. Many of us, our caregivers and doctors have noticed a definite decline at this time.

I was just wondering if anyone else have noticed the same thing?

Is it the disease? Is it that the meds don't work as well? Is it a change in circumstances?? Is it just us??

Lisa, my understanding is that the initial losses in the early years are somewhat compensated for, because healthy brains have so much reserve power. At the point where we exhaust our reserves & lose them, we decline a lot faster, with nothing left to compensate for our losses.

Things like disease, med failure, other major changes, can give us a peak at what's ahead, by wearing down our remaining strength.

The two year thing, I don't know. I'm unsure when to say this mess started, but my best guess is at least 3 years ago. My feelings mess up my connection to reality, but I'm relatively sure that I'm just doing a gradual decline. There are times I almost panic at something new going wrong, but then read my therapy notes and see where I had the same experience 5 months ago.

Alan,

Thanks for sharing. I realize I was having problems prior to my diagnosis but it just seems like I'm having a substantial decline now @ about 2 years post diagnosis. I've heard others say the same thing about the 2 year mark.

I'm curious as to what others have to say.

Hope I get more feedback.

Help!

its been a yr and a few months for me and all of a sudden i cant remember anything.

Laura,

If I may ask, is it you or do your doctors concur with your ideas of decline??

Do you write things down you want to remember??

Just asking.

doc notices too but wants to do another psych eval. I am waiting to do that now but my family and freinds have noticed a marked decline this week alone.

I agree with the reserve capacity comment. My neuro told me the same thing.

He felt that something happened to me around 81/2 years ago that put my brain past the reserve capacity. I did suffer a minor head jolt and neck injury.

My research shows that many other things can effect that reserve capacity. Concussions, high fevers, drug abuse, partial suffocation, chemical toxicity, alcohol binges, etc. can all damage the brain so it uses up this reserve capacity or plasticity as some call it.

In my case, my prior concussions used up the reserve capacity. Then my head/neck injury triggered central apnea. Now, each prolonged apnea episode cause more deterioration.

From what I understand, it works (the deterioration) in a geometric progression. Once a certain critical mass of the disease process has accumulated, the brains deterioration over a fixed time period increases.

This is a well know characteristic of concussion. Each concussion weakens the brain so that the next impact of the same force does more damage. If the first impact killed 100,000 brain cells, the next kills 200,000 the next 400,000 then 800,000 and so on.

As the reserve is used up, the deficits become more pronounced as continued deterioration cuts deeper into functioning.

As I figure it, every morning I wake up with a foggy brain, I have damaged more brain cells.

Since my progression is not disease oriented, it seems to go in spurts. My word finding skills have been going down hill fast this past year. Now I struggle to find common words.

Hopefully, I still have the 20 years of slow sporadic decline like my father went through.

Alan et al,

So what you are saying is that all my reserve in my brain is gone??

Is there a way to replenish this reserve? I'm declining pretty quickly! Although, I've had a lot of stress in my life recently too.

Lisa, that's an excellent question, do we have no reserve in our brains? Or put another way, does there come a time when we don't have any cognitive reserve?

Trying to think like the therapist I used to be, I wonder if it has to do with multitasking? Like, most of the time in my car, I feel less in control if the stereo is playing, so it's usually off. Or at home, can I read while music is playing?

Sometimes I can play music while I'm online, other times it's impossible to do both.

I have my SSDI court hearing November 10, which forces me to be thinking about things. But that just gives me a really bad headache.

Alan,

I'm sorry your getting a bad headache but I'd really like some kind of an answer about this cognitive reserve. I wonder is there is an answer to the question? If there is, who would know the answer? And is there a way to replenish this?

Good Luck on your SSDI hearing. Please, let me know what happens.

I didn't realize you were still driving. I'm on the verge of having to give it up and it's killing me!

Lisa, Alan made a comment that he tied to cognitive reserve. I think I can explain some of what he said.

There is a part of the brain that has a simple but important function. It is the filter or traffic director to the information our brain needs to process. This filter function is an intense user of brain power. This leaves it prone to malfunction with minimal stress, damage or disease.

It is basically the corpus colusum. Think of it as Grand Central Station. But, if the tracks in and out of it are weak or diseased, the information has a hard time making connections between the different lobes.

This dysfunction manifests as an inability to:

multi-task as in doing two or more things at once,
process multi-step tasks as in link a number of steps in a procedure in proper sequence,
shut out other stimuli so that you can focus on just one stimulus as in drive with the radio on,
store an item in memory with usable retrieval,
find something in memory
etc.

The memory might be there but the ability to find it may not. These memory items may pop up with other indexes rather that the index used to find it.

This linking or indexing makes it so we can connect a visual or auditory image with a verbal image. If the Grand Central Station is malfunctioning, the two images will not link properly.

All this to say that these failures are usually after the many working connections have deteriorated. Rather than 6 things that link a face to a name, only one or two still function. If the brain is fatigued, the one or two become haphazard. Hense, sundowning later in the day.

The ability to make new connections between different parts of the brain becomes strained or inoperative.

What is left is a need to find ways to work with the functions that are left.

When I need to recall a word and it wont come, I will look around the room and let the different images trigger my brain into other directions.

Stress is a big factor in causing this filter and traffic director to fail.

There may not be a way to cause a regeneration of these functions but there are ways to work around these broken connections. I think the big unknown is whether the disease process is global or specific to certain areas with other areas left with higher function. If this filter/traffic director is heavily diseased or damaged, then work-arounds will be harder.

The other issue is that of ability to learn new tasks/ways of thinking. My father's dementia was very slow. Over the years, he has time to develop new ways of handling information, lists, cues, reminders, etc. His ability to use lists effectively lasted until the very end.

I have never been able to develop the habits to use lists. My memory failed so suddenly that I forget to use a list unless I get a cue. If I have only one thing to remember, I can often make it to the white board to write it down. If I try to remember multiple things, I forget some while going to the white board or finding a pen and paper.

This is where it is helpful if someone can be available to cue you to use the list or other work-around. With enough reminders, the skill can become learned, even with a weakened brain.

Some people have great success carrying a pad of post it notes in a pocket. This allows them to make notes and post them in appropriate places.

The frustrating part is having the higher functioning skills in some areas with much lower skills in others.

Sorry if I have over stated this issue. I wish I could communicate in simpler terms and words.

Mark--I never heard it put like that but it makes sense. I feel like I can initiate a thought, but the thought doesn't travel. Now that I am on the Exelon patch and Namenda, my thoughts can travel, or make connections, and I feel like I can think again.

Iris L.

Lisa--I had a visit from my geriatrician today. She prescribes Namenda often. She says it helps the brain function better. Are you using Namenda?

Iris L.

My doctor added Namenda to my daily cocktail after using Aricept for 30 days. Before adding Namenda my wife had noticed no improvement in me. Thirty days afer adding Namenda she thought I was "good as new".
Since I was diagnosed in June of 2008, I'm not happy to hear about the tgwo year thang!

Dear Mark, Alan, iris, Tom et al,

Mark, thank you for explaining the function or lack of it. I think I understand it better now. I'm still not sure if it can be replenished or re-worked. I'll discuss this with my doctor.

Yes, I am on namenda. Have been on it almost since the beginning ( about a month after dx). I take 10mg am and 20mg pm.

How are y'all taking it?

Namenda 10 mg. b.i.d.

It was almost two months into taking it, that I noticed I was a little better. Language came a little easier, and I think memory in general was better. I continue to decline, but not fast, and I still have moments of clarity like my old self.

Alan,

I agree I think the Namenda has helped. But I do seem to be declining more rapidly these days.

Do you decline is spurts? Or just slowly?

What about anyone else?

I do know this upcoming move is stressing me although I'm trying my best not to let it get to me! I do know my demon is growing!

At my last visit the neurologist said I may combine the 10 mg b.i.d doses into two 10mg tabs once daily since the half-life is so long. I take the two tablets with breakfast.

Ariceopt and Exelon inhibit cholinesterase. Namenda acts in a different way, by regulating glutamate, a different neurotransmitter.

I improved after Exelon and Namenda, and I'm also improving after using Xyrem, since it is allowing me to have deep sleep. I think the duration and quality of sleep is an overlooked part of therapy for AD patients and others.

Iris L.

Lisa:

quote:

Do you decline is spurts? Or just slowly?

I can't tell!! Sure there are times when I feel pretty good, e.g. when I'm able to keep up in a pleasant conversation, and not even think about having dementia. But when I feel badly, when my functioning is more to the lower end, I feel like I'm crashing.

In short, I suspect my emotions aren't a reliable indicator. I don't think I have a reliable indicator. I suspect that AD is like so many other things, that moves along gradually with an occasional spurt. What's that called, "punctuated equilibrium" I think. Heck, I'm thrilled that my brain spit out those big words!

Iris, you're so right about sleep. I have poor quality sleep now, not the nice restorative sleep of my youth. Actually it was less than two years ago, that my brain lost some sleep functionality. I'm still trying to modify my sleep habits, but my sleep habits don't seem too open to my suggestions.

Lisa, I wonder if it's just the stress making it more difficult for you to function as well right now. My husband's symptoms are very sensitive to stress, but once the cause of the stress is removed, he bounces back to better functioning again.

Lisa,
I'm on Aricept(20 mg once a day) and Namenda(10 mg twice a day)and all was well until.... About a weel ago I went into a deep dark funk. Feels like I dropped off the edge and keep waiting to land. It anint going to be pretty!@#

quote:

Lisa, I wonder if it's just the stress making it more difficult for you to function as well right now. My husband's symptoms are very sensitive to stress, but once the cause of the stress is removed, he bounces back to better functioning again.

JAB gets my vote for most likely circumstances. I was told by a neuropsychologist that anxiety cut our functioning in half.

For those in a compassionate state like Colorado, medical cannabis is a perfect solution for this.

Jab,
I think this stress is playing a part in my decline. I hope I can recover like your husband did.

Iris,
I wish I could sleep like that!

Tom,
What's up???? Have you seen your doctor or a counselor yet? Please, keep in touch!

Alan,
I was impressed with those big words too! lol.
I wish I could get my hands on some legal medical cannabis!

Lisa, you have to get some help! You can't go on like this! You have to figure out a plan B. (or plan C or plan D if necessary)

Iris L.

Hey Iris,

I do have a plan B. I am moving upstairs from my parents. There is a small one bedroom apartment there. I have partially moved already.

My sister and her hubby are leaving New Jersey on Saturday am to drive here to move into my house! ( I do hate giving up my house).

Help is on the way! Hope I can hang on! You can read more about it on my blog.

Thanks.

[/QUOTE] For those in a compassionate state like Colorado, medical cannabis is a perfect solution for this.

Alan,
I was talking to someone about this recently (although I live in anything but a compassionate state), I thought that cannibus would make me more forgetful and disorganized. No?

quote:

Alan,
I was talking to someone about this recently (although I live in anything but a compassionate state), I thought that cannibus would make me more forgetful and disorganized. No?

Gina, the world of medical marijuana is way different from the street stuff you may have tried in your youth. There are varieties that have been scientifically bred to emphasize various characteristics.

A quality medical marijuana, used properly, shouldn't make us forgetful and disorganized, but rather the opposite. One factor is the amount we take - - perhaps too much of a particular variety could have unpleasant effects. But that's the same as a prescription drug, where taking extra has side effects.

The point of medical marijuana use is to get medicinal benefit. I don't take enough to make me high. I've accidentally got too strong a dose a few times, and I don't like the way that feels. Also, I don't smoke it - I hate smoke. I have a vaporizer for quick results, and I always have a spiced, milky canna-tea in the refrigerator.

I'm happy to answer more questions.

Tom,

Are you there?? How are you?? Have you seen your doctor yet??

Alan,
How can I get medical marijuana??

No contact with any doctor yet. Next scheduled appointment is in December sometime. I just need to noddle some things out. I'd rather keeo my lips tight and my fingers in my pockets until a clear direction comes to me.
Thanx Lisa.

quote:

Alan,
How can I get medical marijuana??

Very carefully. None of the Southeastern states allow medical marijuana.

If you decide to improvise, be very, very careful who you work with. Try to find someone already involved in medical marijuana, and build contacts from there.

All marijuana has the basics in it for medicinal value to one degree or another. But, it's best to work with medicinal growers who know what their varieties do. Perhaps NOLA has some NORML folks, or head shops you could discretely make inquiries of. And of course, ask friends who they know.

Tomatoes.

You never call it by its actual name and nicknames. I don't know about everywhere, but in my part of the country we refer to marijuana as tomato plants. But regardless of its code name in your state, do not start talking to strangers about marijuana, not explicitly.

Tom,

Please, don't wait until December. You'll be in a huge blue funk by then!!!

I'm here or call me!

Thinking of you!

Alan,

Tomatoes, huh? Wow, I've been out of the loop so long. I know someone who still gets the stuff but I don't think it's medical marijuana and that's what I want!

I'll I need to happen now is to get busted!!! lol.

Weather the "two year" ledge is real or not all we can do about it is to keep doing what we are doing. Personay, I'll pop every pill approved by the FDA that I can. I might even begin to sharpen some tomatoe stakes! This is not going to get the best of old T Tommy!

Hey Tom,

Good for you! We'll do what we need to do, right??

Anyone for some tomatoes?????

Hang in there. We're here!!!

I've been thinking more about the two year thing. Everything I've read about Alzheimer's type dementias has said, the disease is working on us for years before we get to a diagnosis. Still, there may be things about us guys that were relatively young when it came, e.g. we were in jobs when our symptoms first showed. Perhaps if we had been in a laid-back retirement, who knows, maybe we would've gone another year or two before needing the doctors.

Alan,

Very good point.

quote:

Originally posted by Alan in Colorado:
I've been thinking more about the two year thing. Everything I've read about Alzheimer's type dementias has said, the disease is working on us for years before we get to a diagnosis. Still, there may be things about us guys that were relatively young when it came, e.g. we were in jobs when our symptoms first showed. Perhaps if we had been in a laid-back retirement, who knows, maybe we would've gone another year or two before needing the doctors.

Just wanted you to also know, I probably will look at people a tad differently when they talk about their "tomato plants."

Cindy

Hi Everyone

Been reading the posts on this thread. Interesting topic---2-year decline...

Although I was diagnosed 14 mths ago, I had noticible decline at least a year and a half previously. Frankly, I rationalized it to being stressed and not sleeping well.

No matter how much rest I got the worse it became. Stress? I think we all live with it in one sense or another. In my case, ANY stress that I am subjected to throws me overboard. I absolutely can't function. Sundowning is extreme for several days and nights. My words & vocabulary are basically gone not to mention my vision is now following.....

Again, the reality of KNOWING the decline scares me to death. At times, I find myself wondering if my Pop had the same symptoms. I do know that he too had several mini-strokes they showed up on his PET Scans.

Tomatoes? Hmmm, are they "green". LOL
M

Very green, and when the flower buds come they're usually tinted with a lovely color, ranging from blue to yellow to purple etc. Don't know about the flowers, they're harvested before flowering.

Mary, I think you're doing fine. You were only diagnosed about a year ago, and my first year was pretty frantic and discouraging, too. I think there's a natural process of accepting and adapting to our disease. Perhaps two years are what it takes many of us to calm down and start being realistic?

Hey Mary, Alan, Iris, Tom et al,

I think Alan has made a good point. The first 2 years I was frantic for answers, research, meds, therapy whatever.

Now, 2 years after being diagnosed, I've moved, am trying to settle in to a NEW life. Yes, I am declining and stress is a HUGE culprit. But, sometimes, it is what it is!!!

P.S. I'm, also, seeing a therapist!

Howdy everyone, i was reading some of the post's here and see alot of my issues and thoughts here.

I have had two heartatcks, one stroke and countless "mini strokes". I have also notiiced a real change in my ablity to see print and signs ect.. The time change here (one hour back) has messed me up bad, i seem to have real issues when the sun goes down till sun riase. It has begain to become so bad it just isnt safe for me to be out alone at night. I have wandered off some meay times one time right off the frount porch while my friends were just inside the door.

I notice that when i am having the worse problems i am under unnormal load of stress (for me)and one thing leads to another to another... It seems like a just over the last 5 or 6 mounths things are going down hill faster then what i have read or heard about. After i have what i call a melt down i dont seem to compley recover, as if more damage is done.

I dont know this is all to much for me to prosses at times, but can some one please fill me in on what i have to look forward to in the months to come.. please dont hold back i need it stright, dont pull any punchs!

ROCK ON!!

quote:

I dont know this is all too much for me to process at times, but can some one please fill me in on what i have to look forward to in the months to come.. please dont hold back i need it straight, dont pull any punches!
ROCK ON!!

Sarg, I hate to break it to ya, but I have no psychic abilities, no precognition. But, buddy to buddy, I'll tell you what I think is happening right now, ok? And may I remind you, I have dementia, so take this with a grain of salt.

From your description, perhaps you've lost most of your cognitive reserve? Our reserve is what I call that part of our brain that takes over when another part of our brain goes down.

Oh wait . . . It's like a football team. They're playing hard, and every so often one of them gets hurt and has to leave the game. No problem at first, they'd just bring someone off the bench. But now, it's at the point where there are only a few reserves left, and they're pretty scrawny. Soon even the scrawny ones will be off the bench, and there'll be no more reserves left to come off the bench. Each time a player goes off the field, it affects the team play, and there's nobody to take his place.

Since we're running out of brain cells, we find ways to recharge the neurons we have left. If all my circuits get blown, I need three quiet days to get back to where I was.

But Sarg, we can still choose to enjoy what we still can, as long as we can.

OO yes Alan now foot ball i understand GO COLTS, lol.

I wan to thank you alan for the info and being real with me. Some people try to sugar coat things. I realy dont know what to say other then that Alan, im kind of numb. I have read all i can stand about Alz.

I try to make the most of every day i can, sometimes its hard to do when i know it realy wont matter what i do or have done. I tell my friends when they come over and tell me that i have done alot and stuff. They are talking about the awards and stuff i have recieved. I tell them i can take all those letters, certs, placks and with $2.00 i can get a cup of coffee.

I know the truth, out of sight out of mind. Some tell them some people are "has been" but i am a "never was". It kinda stops them before they ask what this or that one was for. Hell if i know (some times i can remeber and some times i cant). I know in my heart im proud of what i did for my country but i dont want the embressment of not remembering some if it.

Im sorry Alan i must go now, thank you. Im out of tears anymore. I think i'll just go back to getting my playlist strightened out.

Rock On!

DJ^Sarg

P.S. I will be live on the air at approx 7pm my time (indiana) tonight, hope you all can tune in!

Yo Sarg, I think your going on the air is pretty special. It takes a lot of preparation time, which requires a lot of processing in the old noggin. I'd expect you'd need at least a day or two to feel recharged after a show.

Please don't fall into the trap of saying everything you've done is crap, ok? I understand, I tend to do the same thing. But buddy, we've done some important things in our lives, and there's no decent reason to not feel good about it.

Hi DJ Sarg, Thanks for the Halloween music show.

You asked what can you expect over the next few months. You also say you've had a heart attack, a stroke, and many mini-strokes. This means your blood flow in your brain is diminished, which is causing part of your memory problems. You need to be very careful about controlling your blood pressure and cholesterol and whatever else your heart doctor told you to watch. Keeping these under control can help control further memory loss.

You also mentioned on other posts about wandering away and getting lost. Since you already know what your vulnerable area is, you need to protect yourself in that area. Set up external boundaries for yourself to keep the wandering to a minimum. Keep people around you alert to your schedule and habits so they will know to come look for you when necessary.

We are in danger of losing our independence. We need to do everything we can to avoid that, or at least delay it. Keep your life as normal as possible. Rock on, DJ Sarg!

Iris L.

Anyone else out there notice their 2 year decline?

Please, let me know. Tell me your story and what's going on with you!

Lisa,

I have been diagnosed for about a year.

I have noticed some changes, such as more problems with word finding, math skills are not quite in the toilet but close.

I've noticed difficulty in trying to figure out cash transactions, the hustle and bustle of checking out can be quite confusing. Debit cards are extremely helpful.

I don't handle the bill-paying anymore and haven't for over a year, I really messed it up.

I'm also starting to have some more balance issues but that seems to come and go.

I find myself getting more quiet in conversations, they are harder to follow.

What have you noticed Lisa?

Cindy

Dear Cindy L,

I'm sorry it's taken me so long to answer you. My computer has been on the fritz since I've moved.

TV is definitely not only difficult to follow but also aggravating! Loud sounds, voices, noises are also irritating. My short term memory has gotten worse and my word finding stinks!

I do still pay my bills on line but have had problems with that as well.

I've noticed that my visual/spatial problems have gotten worse (like climbing stairs and driving).

Many times I feel like I'm in the twilight zone (not quite in reality). It's hard to explain. Or sometimes I feel loaded.

Like you, I am having more problems with following conversations. If more than 1 person talks, I'm lost!

How are you doing??

Hi Lisa,

I understand that twilight zone like feeling. It is difficult to explain. Sometimes my brain feels like it just got off the merry go round...a slightly buzzed, disoriented feeling.

I no longer drive, the doctor said, quite clearly, "NO MORE DRIVING." I hadn't been driving for several months because it was getting so hard to judge distances but it still kind of hurt to hear.

I hate when doctor's validate what I know...makes it a tad to real for me.

I am lucky to have a partner who took over the finances over a year ago. I really was messing up on the bill paying...paying some twice, some not at all, paying too much or too little. It was a disaster.

We are going to pack up and move down your way the first of next year. On Algier's Point.

I'm looking forward to the new area, where I can walk to most everything I need and being closer to my brother and his family.

I'm nervous about the actual logistics of moving so far.

Cindy

Hi Cindy,

I know what you mean about that diving thing!

You are very lucky to have someone to not only take over your finances but to love and hold you!
I miss that a lot! Sometimes, I'm very lonesome for that human touch.

Wow, you are moving far away! From Minnesota to New Orleans is a far piece! Algier's Point is lovely. I think you'll enjoy it. Do y'all have family there?

Keep in touch..Please, let me know if I can help.