Before I had dementia, probably Alzheimer's, I just thought about it in terms of memory problems. But, now that I'm inside the disease, it looks different. Sure, there's the memory stuff. But other things, too.

For me, it's the agnosia problem, which sort of means that I can't connect what I experience with my senses, with what my mind knows about them.

Fairly often I will see something, and not know what it is, even though it may be a common item. Or, I'll clearly hear what someone is saying, but miss the meaning of some or all of the words. Also, it happens that my wife will say, "Do you smell that?" and I'll smell something, but I can't identify the smell. Sometimes, if I hang in there, I'll be able to identify what the thing is. Not always.

Anybody have this, and/or other surprises?

Probably not some much of a surprise, more of an awaking is getting lost. Not just lost but not knowing where I was going!

Hey Alan and Tom,

I've had several surprises, lucky me.

Getting lost was a doosy!

Putting food in my mouth and expecting a particular taste only for it to taste totally different from what I remembered or expected. (or lack of taste)

Declining. I didn't know what it would feel like. Now that I am, I still don't understand it! But, it does make me feel stranger!

Having someone talk with me and have me NOT understand! Wow, it's so weird!

I'm surprised I'm still doing so well after 13 years.......

Another thing, difficult to describe: The way I feel when I'm getting worse, or notice that I've gotten worse.

What I think happens is, I bargain with my disease, and understand that what its done to me is irrevocable, but somehow I get to thinking that I won't get any worse. Of course, I keep getting worse, but sometimes I have a stretch of weeks where I'm holding the line.

I've taken more mental status tests since my neuropsych testing. I've experienced slow decline in my mental status scores, which puzzles me. I don't feel like I should score that low, in fact I'm always stunned that I don't score near the top.

And, another thing like Lisa experiences, I can get lost now. Like this morning, while my sweetie is having a test at the hospital, I went to find coffee. Not too much trouble getting there, but finding my way back to the Radiology waiting room was, uh, an interesting challenge.

Being geographically challenged was never a problem till fairly recently. I grew up in Appalachia, and since childhood I've often taken long hikes in the forest. No trails, usually, just a sense of direction that never failed me. Even cave exploring in large, wild caves, never lost.

Hey Everybody

I truly believe the worst for me is the loss of depth perception. Not 100% but, I'd say about 35%(?)

Another difficulty, I absolutely can not go into an office and find my way out. Especially if I've never been there before.

I'm at a point in my life that yes, I can still smell things, however, most foods I can not. I no longer have an appetite, yet, I stay dehydrated and my thirst is never quenched.

Alan, what part of the Appalachian's did you grow up in? I used to enjoy bow hunting for deer. But, no longer.

Like all of you, I realize when I'm declining, but, I choose not to say anything. My oldest daughter is still in denial. At this point, it hurts deeply. I feel that we are loosing precious time.

I applied for a state medical card today. Because of my divorce and Medicare taking up to 25 months, I had to swallow my pride and apply. This was a very difficult (pride again!) thing for me to do. I have always worked hard for what I earned. I don't feel that I have worked long enough to pay into "the system" in order to have this gain....still swallowing.....

M

Loss of depth perception cost me my drivers liscence!

HI ALL - I DO NOT HAVE ALZHEIMERS BUT MY MOM DID. LOST HER LAST YEAR. I'M STILL TRYING TO LEARN ALL I CAN SO YOUR DISCUSSION IS SO MEANINGFUL TO ME. THANK Y OU

Dear Redwagaon,

Hello and thanks for joining in.

Mary, I'm so sorry you had to swallow so much pride. It's hard to get down! But, you did what you needed to do! Kudos!

Alan, Mary, Tom et al,

I suffer with you. I know what you are feeling. I am declining by the day and there is NOTHING I can do. I try desperately to hang on to this roller coaster but I feel I am now loosing my grip!

I scream inside the vacuum of this monster! There is no one there but me and the monster! I am lost!

Lisa

For god's sake hang on to that roller coaster! Do not let the monster win. Not now, it's too soon!

We're all here holding onto you...don't loose your fight. Get up and dust off your britches...NOW!

Don't you dare leave us sooo early
M
M

Lisa, we are there with you. I stuggled last weekend and I'm sure everyone here has struggled one time or another on what to do. What I can say, what you decided has to be what you want to do.

Last week, I decided I didn't want to do anything to prolong this mess. I told my husband that I was no longer going to take my meds. He said it was my decision. He let me decide and was very sad. Then I realized if I stopped all my meds and I went to court for my disability, it wouldn't be good. So now he knows when court is over no matter if I win or not my meds will stop if that is what I want to do. He is very supportive of me and I wish everyone had that going for them.

I know what I'm trying to say, but it just isn't coming out. Hang in there and do what is right for you. Does that make sense?

Mary, I spent my life through high school in Monroe County. It's the second from the bottom in Tennessee's SE corner. I've never bow hunted. Except for small game, I was never much of a hunter. My last hunting trip, a few years ago, I went to a lot of trouble to have a great elk hunt. All the footwork and planning came together, as the sun was rising and there was a doe elk in shooting range. I moved to get a better view, she saw me and moved into cover. I felt like I'd had the perfect hunt.

quote:

I suffer with you. I know what you are feeling. I am declining by the day and there is NOTHING I can do. I try desperately to hang on to this roller coaster but I feel I am now loosing my grip! I scream inside the vacuum of this monster! There is no one there but me and the monster! I am lost!

Lisa, what could change, to take some pressure off you? What needs to happen? And hey, your writing is really powerful. Very clear, I think everyone reading it has a good idea how you feel tonight. You're not screaming in a vacuum, your friends hear you. And if you'll look at the monster, he's actually easily scared away for a while. He can't stand anywhere near bravery, and optimism just crushes him. All bullies are cowards on the inside.

Cheri, what kinds of meds are you stopping? Just for dementia, or are there additional health problems?

Cheri B

I RESPECT YOU. You have to do what's right for you! I too had this pass in my mind but, I've never talked about this with anybody else.

I have thought that when the time comes, that I can no longer deal with the not recognizing or knowing what something is....I may quit the meds too! I do know that I no longer want to continue going to a neurologist. I'll stick with my primary. She found the disease after much testing. I say kuddos to her!

I feel sorry for your husband, he's there for you but, his hands are tied. It is ultimately your decision, nobody else can do this for you.

I guess we all have to make our own decisions. In reality we do that every day.

M

Hi to All,

Thanks so much for your love and support. I was feeling low and defeated last night but am feeling a little better today.

I have an appointment with my neurologist today so I'll see what's up.

Cheri,
If I may add, don't give up your meds until the end!!!! They will help you a lot along they way. (I stopped my meds 2 years ago for a month and saw a rapid decline.) It may require some adjusting but don't give them up until you've completely given up!
And, don't give up! We're here!

I love you all very much!!

Hey Lisa

Wow, you really had me worried last night! I'm glad to hear you doing a bit better today.

Take care of you
M

So Lisa, please tell me all about your neurologist visit?

Alan, just Aricept, Nememda and Lexapro. Like most people on here, one day is dooms day and the next is all flowers and sunshine. I'm sure before my social security court date comes up I will have changed my mind a hundred times.

Cheri, if only I didn't understand!! I'm feeling relatively normal, for me, right now. But, as I was responding to a post about someone's mother apparently easing into Stage 7, I cried for a few minutes, just feeling the pain I know the writer feels. My mom left us a bit over a year ago, one last stroke. I understand the way an Alzheimer's death brings on extremes in how we look at it.

Just re-thinking about it, I'm crying. In my prime, I almost never cried, I'd go a decade without significant tears. Now, it's a different story. I'm never tempted to stop my meds, because I think without them I'd be institutionalized.

Alan, I understand completley.

It is sort of like going through a war. You fight and fight because you know there is something wrong with you and then D-day happens, all of a sudden everyone knows you have EOAD and there is life before the war and life after the war.

I must say we vets have a different view of life than most people these days. They think a good day is when there are no traffic problems on the way to work, everything goes good at work and no traffic problems on the way home.

We on the other hand have a good day when we are able to figure out that you can't put your jeans on over your sweat pants.

We live pretty close some day we will have to meet.

Hi to All,

Yes, saw the neurologist today. Strange visit. Actually this is only my 2nd or 3rd time with her. She did her neuro exam, we talked a bit (I cursed a bit), she changed my Geodon to risperdal. Then, she requested a new MRI and EEG which I agreed to. They will set them up soon!

I will now see her every 3 months until I re-stablize or whatever.

She and the Nurse Practioner were both very nice and helpful. But, I could see their faces!!! DECLINE, DECLINE, DECLINE!!!!


And, on top of all of this I am still fighting this virus (h1N1) whatever!!!

She spoke with me about not driving and I told her NO! That I could still tell my bad days from good ones and that I would only drive on good days. (She didn't say anything else).

I am waiting for Linda (my sister) to move here to begin a study drug. You can only be on a study drug if you have a caregiver!!!!!

P.S. I did put my jeans on right but I had to lay down on the bed to zip them!! lol.

Love to All,

Lisa, so it was a good visit? What did she say about changing to risperdal?

MRI and EEG? I like the kind of tests that I can take with my eyes closed!



"She and the Nurse Practioner were both very nice and helpful. But, I could see their faces!!! DECLINE, DECLINE, DECLINE!!!!"

I don't know what you mean by that?

H1N1 has to be the biggest surprise! Good luck Lisa.

Alan,

I'm not sure what your are asking? She said to stop the Geodon and start the risperdal (generic). At least I can afford this one.

As for the decline, I've known this NP for a while and I could see (in her eyes) she was upset by my decline as well as the MD.

I go to see this new therapist today so wish me luck. I hope it's a good match!

Hey Tom,

This H1N1 is kicking my butt! I still have a low grade fever this am and cough. I see my PCP this am too.

Wow, I'm a freaking old person!! Doctors, doctors and more doctors!!

Lisa? Time for the evening news! How's the new therapist?

Alan,

The new therapist was interesting. At first, I wasn't sure if it was a good match. As the session went on, I felt a little better. She's an RN with a masters and a teacher. She, also, has a phd in psychology (I think). She's had 2 parents die of dementia. She's a Mom and works.

The first visit is always a pain in the butt because you have to give out so much info. but it did end ok and I scheduled another visit next week.

Input?

Input? I'm curious as to how you'll use the therapist. I see a psychologist every two weeks. It's mostly a ventilation time, to get out my resentments and fears. Seems there should be something else, but I can't find it.

Alan,

I guess I'll use her for several things. Her Phd is in psychology so I'll use that, along with venting and probably sharing things with her I can't/won't share here or with my family.

Also, dealing with this decline stuff! I hate it so much! I hate this disease

Lisa, I hate hate hate what's happening too! A deep hatred, that if it were toward a human being would quickly lead to violence.

I keep bargaining with it. I'll convince myself that it's stopped, and that I just have to learn to cope with what I've got, and I can do that.

But then, there's a few days of whatever-it-is-this-time, and I never get back to my previous baseline.

Isn't it fascinating, how so many of us can type out our thoughts so much better than talking?

Alan (retired peer volunteer),

It is fascinating how so many of us can type out our feelings but have trouble verbalizing or speaking them! Although I think I shout them very nicely!

I've decided (along with my np) to stop/wean off my risperidol (I'm getting too many side effects from all these meds). I hate the side effects as much as the rage!

When I'm completely off this anti-psychotics, I will the change my antidepressant in hopes of helping the rage. And, along with the therapy, well, keep your fingers crossed!!!

I don't know what else to do. I'm fat and I HATE that. Now, my tongue is moving and twitching, heck, I just can't stand it!! Hate is a nice word for how I feel about all this!!

I hope my monster doesn't start growing again. It scares me! And, I think, it scares my family more!

Yikes, this is ALL so crazy!!!

quote:

I'm fat and I HATE that. Now, my tongue is moving and twitching, heck, I just can't stand it!! Hate is a nice word for how I feel about all this!! I hope my monster doesn't start growing again. It scares me! And, I think, it scares my family more!

Tardive dyskinesia already??? Bad luck. As for meds, I've seen people's mood stabilize after four to six weeks on an SSRI. Remember to check Cymbalta, I think it's an SSNI, it helps with my pain and blues.

I wonder if it's the Seroquel that won't let me lose weight? I can gain by thinking about food, but a week of greatly reduced calories didn't change the scales a bit.

Lisa, I hope our monsters decide enough is enough, and leave us alone.

Alan,

I think I've had enough monsters to last me a lifetime!

After speaking with several professionals, I believe the fat monster lives in Seroquel or at least loves to eat Seroquel!

Hang in there, Alan.

Love Ya,

This is an interesting discussion and seems to be a continuing topic with us!

quote:

1. I am fat! Too Fat, been getting fatter, I cannot blame it on Seroquel because I don't take it. I gained about 20-30# last summer, it got worse after surgery and I can't get under the level reached last summer. mhd

I have been reading The Twelve Steps As Spiritual Practice The Twelve Steps As Spiritual Practice by Rami Shapiro.

This book speaks of practices of Buddhism, Christianity and Judaism applied to 12 step programs. It is practical not religious, by a Rabbi, in a 12 step program, speaking of the practical reality of the working the 12 steps.

I am at that point that I can say I have bottomed out on trying to control my eating, I am powerless, I have surrendered, I have turned it over.

Will this do it? Who knows? I know I cannot do it myself, diet pills went out in the '60's, my addiction to them went in the '70's. now I am at where I was with pills and booze over eating! I can only trust and hope what worked before, worked again, will work this time, cuz I am in despair on my weight.

quote:

2. I have found re-current visits to a psychologist specializing wit AD's helpful, not ofter but when I need it.

I use Lorazepam when I get anxious and shaky!

quote:

3. I am sick it seems every other week. Symptoms are like a recurrent flu

I finally went to the Doc. Lab tests came out normal. I am waiting the results of a CT-Scan of digestive system which I expect will be normal. All of the Symptoms fit Aricept which I have been on with Namenda now 3 years, and the flu symptoms are only a year old.

If it rules out to Aricept as the default diagnosis I will live with that. I know Aricept goes well with the function of my brain.

So there it is gang, a little long, (Sorryyyy Lisa . I am just checking in on the topic

quote:

I can only trust and hope what worked before, worked again, will work this time, cuz I am in despair on my weight.

Mike, I'm confident that the same skills that have kept you sober, can be adapted to face pretty much any challenge out there. If Alzheimer's doesn't rate a Serenity Prayer, nothing does.

Yes Mike,
Hang in there. I agree with Alan. That Serenity Prayer has worked for you in the past!

Good Luck.

I lost 100 lbs (from 300 to 200 lbs) by cutting out fats. I did no exercise because of my physical limitations.

Now I have yo-yo'd 5 times over the past 10 years. (from 170-200 lbs). My appetite is out of control but it is a little better since I've been on the Exelon and Namenda.

One of my tricks: I cut up an apple into slices. I munch on apple slices at night instead of the box of cookies that I usually eat.

I'm trying to follow the DASH diet plan (Dietary Approaches to Stop Hypertension).

Perhaps we need a DASD diet plan (Dietary Approaches to Stop Dementia).

Iris L.

Hi Iris,

I know about that weight gain but congrats on loosing your weight! I've gained this 30 pounds and can't get it off! I'm an oink oink!!!

Good luck.

I piled on pounds with Seroquel. Fluid gain, as well as appetite surges. And it won't leave! My normal approach to losing a few pounds doesn't work, the fat just hangs on. Any ideas for how to trick Seroquel fat into leaving?

Maybe the drug company will sponsor a Seroquel patient as a contestant on The Biggest Loser.

Iris L.