One common theme among us EOAD guys is, early on our doctors are skeptical of what we're reporting. And that can be a maddening thing, right? Why in the world would someone pretend to have Alzheimer's or any other dementia?

Does anyone know of anyone who has faked dementia? I sure don't. Even back when I did competency to stand trial evaluations, nobody faked dementia.

My doctors, over time, have ceased their doubt, as my symptoms have grown too distinct for them to equivocate. But I'm sure they're doing it to other patients, less far along than me.

I'm wondering why doctors seem so skeptical of early dementia.

The early signs of dementia overlap with those for depression and anxiety. American society has a bias against mental illness, which is considered a form of personal weakness. Americans abhor weakness. On the other hand, losing one's memory is a sign of old age, and American society has a bias against old age.

Why would anyone fake Alzheimer's? That's a good question. Why would I give up a wonderful career that I loved, a high income, upper middle class life, and the respect of community, friends and family, in order to "fake" losing my memory? Why would the doctors day that? Can somebody please answer that?

Iris L.

I could imagine someone faking AD just like they fake back pain or other illnesses to get disability, to get sympathy from others, to relieve themselves from responsibilites they have.
By the way, I don't think anyone here is faking AD, I'm just saying that it's in the realm of possibility for some people to do it.

Good comment jellybeans, and of course no one here thinks you're making accusations. I asked for input, and you've pointed our that there are people who try to get disability.

I think I'm coming from a place similar to Iris, that my career was going just fine until my brain started to deteriorate. I had a good income with benefits, and SSDI is a huge step down, both in terms of income and status.

So far then, we've discovered that someone, who is already of low financial and community standing, can have reasons for aspiring to SSDI.

Other thoughts, please?

I'm sure that there are some people that would "fake" AD. However, wouldn't some of the brain scans be able to detect such? In my case, the disability payments that I still haven't been approved to receive which will just go to the insurance company if/when such should occur will not "benefit" me at all that I can tell. I have been denied once by social security and going thru the appeal process. Just a mess! Believe me, I'd much rather receive the paycheck I was receiving than the payment I now receive. I too worked in corporate America and received a nice paycheck twice a month along with the health insurance, etc. The payment I now receive is MUCH less. If not for my insurance, I'd really be in a mess and totally depressed. Dealing with the day-to-day issues is enough. I imagine there are those that would fake the disease. There is no way I would want to be labeled with such regardless. It is lot a good feeling for me.

Alan, Iris, jellybeans, gyr et al,

I guess there are some people that would try to fake anything! For instance, Fake law suits??!!

There are people that aspire to receive SSI thinking the government will take care of them and they don't have to work at a meaningless, menial job that they hate anyway! I know I sound cynical but I've seen it first hand (not with dementia/AD but with other diseases/injuries)! I know it's hard to believe but it is true.

Like you, Iris and others, my EOAD has FORCED me to take disability which is a huge step down with NO future!

Last year I consulted with a psychotherapist to help me deal with my chronic medical problems, one of which was my memory loss. I was very anxious. After my first visit with the neurologist, I was distraught for a long time, because I thought that the doctor did not take my memory complaints seriously. The therapist tried to distract me by suggesting that I take a walk along the beach. I thought to myself, the last place you want to send a memory loss person is to a place where there is nothing but sand and water and no other landmarks. Because of that offhand remark, I thought she didn't take my memory complaints seriously, either. Although I continued to work with her, I never felt comfortable with her again.

Iris L.

I've never forgotten a response Alan made somewhere on these forums to someone thinking their LO was "faking."

He said something to the effect of:

"There's never been one time that I faked forgetting, but there have been plenty of times I faked remembering."

That comment made quite an impact on me and the way I look at this whole disease. That tiny insight into this journey gave me an ability for understanding I might never have found.

(Alan, can I slip in here an apology for rambling on this forum when I've had too much vodka to drink? Somehow it seems you're always the one who catches the brunt and you always have the sense to challenge me. And I'm always too ... whatever ... )

You amaze me. I am sorry when I make no sense or offend. Please forgive?

Teri

Teri, I forgive you for . . . well, whatever it is you're talking about! Frankly, I have no idea. As far as I know, you're an angel. I wonder if that's related to my tv never showing re-runs anymore?

That quote of me sounds pretty good. And, it would probably sound even better with a shot of vodka, straight out of the freezer. Unfortunately for me, two or maybe three doctors told me that drinking alcohol regularly would put me in a nursing home in about a year.

gyr, I think it would be very difficult to almost impossible to successfully fake early dementia, especially where I am at, Stage 4 out of 7. There are so many subtleties, ups and downs, unpredictable things, this far in.

Lisa, ever do ER duty? I've done psych evaluations off & on in ERs since my 20s. Once I had to assess a malingering little twerp, who just couldn't stay in character. The ER put a car accident victim next to her bed, just separated by a sheet. Judging from the sounds, the accident victim had broken ribs, that were stabbing into her lungs. My patient dropped the act, pointed toward the accident victim who was moaning in agony, and said "I don't have any problems. She has problems."

Iris, you deserve a therapist that speaks your language. I see a psychologist that knows less than I do about dementia, but that isn't important to me. I need the emotional support, the safe place to say how I really feel.

Oh Alan,

I don't believe it's possible for anyone to fake having AD/Eoad. But, I am still sure people try!

Iris,
Please find someone you can trust and that you are comfortable with.

Teri,
I don't know what you're talking about either!

Alan, I,too, think your pretty terrific!

For me it is just the opposite. I tried my heart out to stay in denial but the doctors lept running tests that confirmed the original diagnosis. I began to give up on the denial thing when I was found wandering around where I shouldn't have been and I couldn't explain why I was there. After five doctors had confirmed that is was dementia and probably Alzheimer's, I'm begining to think I might not be correct. I'm still hoping I'm wrong about that!

Tom, what's the saying . . . "I reject your version of reality, and substitute one of my own."

And a suggestion for the Tom Theme Song: "To dream the impossible dream . . . "

LOL !!!

I know I'm cynical but I believe some people are capable of trying to fake anything including AD! For Money!

It's a sad world!

Tom,

I've done the same thing searching for doctors who would change my diagnosis. The darn doctors all agreed with the initial diagnosis. I was furious.

I think I've gotten past the denial stage and just am working on enjoying one day at a time.

If someone wants to fake AD...they are nuts. What is that called where people have faking illnesses they don't really have? Now those are some seriously disturbed people in my not so humble opinion.

Cindy,

I forget the word, but my mom is one of those people that if someone has a medical problem she thinks she does too. Except for her sister died of AD and she absolutely refuses to think she might have it even though us kids think she is showing signs. She is always saying she is sure she has cancer or some other fatal illness, but not when it comes to AD.

I am one of those many that are told by their family that there is nothing wrong and I must be faking. If they could be in my shoes I guarantee them they would not stay as long as I have had to, right at 7 years since diagnosis and it took 2 years to get a diagnosis. Who in their right mind would fake something as this? Maybe what I said was the key, "who in their right mind?"

Tracy

Indeed, Tracy. Who would fake this? And past that, who could?

On the other hand, I long for the days when no one thought I had a progressive dementia, probably Alzheimer's. Hearing a doctor refer to me as having Alzheimer's . . . it's a cold feeling, like I'm stuck in the dark and can't find a light.

Hello to all who post here. My name is Bill and your posts on this forum are very informative and helpful to someone who doesn't know if he has AD and hopes he doesn't but if he does, knows there are those he can talk to about it.

Alan, the reason I'm replying to your post is, I was recently accused of falsely taking 2 different memory tests, by a neurologist who saw me from the onset of my concussion in 2005 until 2007. I went back recently to retake the tests to see if there was a change in my short term memory because in the past 6 months I've had several instances of short term memory loss that I can't explain. So I felt retaking those tests would be a good way to see if there is a problem.

Sure enough, when my test scores were compared to my previous scores they were much lower but what happened next totally shocked my wife and I. The doctor was very rude and accused me of not taking the tests in an honest manner and said the only way my scores could be that low is if I had Alzhimers and I didn't look like a person who has it.

Believe me when I tell you, the last thing I would ever do is be deceptive when I'm trying to figure out what's going on and regain what I've lost so his remarks hurt alot. I had seen this doctor since 2005 after my concussion and felt he had been very helpful until now and will never see him again because of the way he treated me.

However, because of what he said, I looked up the 10 signs of Alzhimers and realized, I can relate to 6 of those signs with no problem. In the past 6 months, I've had some instances of total short term memory loss, sudden changes in my demeanor, not knowing what day it is, nor hearing what someone is saying to me even though they are talking to me directly.

So, I called the local chapter and they are sending me a list of doctors who specialize in this disease so I can get checked out. I'm really hoping it's something else but knowing my grandfather had it and knowing my luck, if it is, it is and we'll deal with it as best as possible.

Well, I apologize for being so winded but wanted to share what happened to me which, if it hadn't happened to me, I wouldn't have believed it could happen to anyone.

quote:

Originally posted by Alan in Colorado:
One common theme among us EOAD guys is, early on our doctors are skeptical of what we're reporting. And that can be a maddening thing, right? Why in the world would someone pretend to have Alzheimer's or any other dementia?

Does anyone know of anyone who has faked dementia? I sure don't. Even back when I did competency to stand trial evaluations, nobody faked dementia.

My doctors, over time, have ceased their doubt, as my symptoms have grown too distinct for them to equivocate. But I'm sure they're doing it to other patients, less far along than me.

I'm wondering why doctors seem so skeptical of early dementia.

quote:

The doctor was very rude and accused me of not taking the tests in an honest manner and said the only way my scores could be that low is if I had Alzhimers and I didn't look like a person who has it.

What are we supposed to look like? Stooped, unclean, drooling, mumbling . . . ? The truth is, many doctors only know about Alzheimer's in its late stages. Very few doctors know about early onset, early stage symptoms.

I can sort of understand how your doctor feels. I go to a monthly EOAD support group, and I'm always amazed at how well some of us can still present ourselves. I don't think it shows in casual conversation until well into Stage 5, for a lot of us.

As for figuring things out diagnostically, my experience is that neuropsychological testing is the way to go. I had tons of denial going into my testing. I was telling the doc's secretary that I'd be easy money, that I was great with tests, and I expected I'd be the healthiest person the doc had seen in years. Well . . . . .

I was shocked at how much trouble I was having with the testing. In only two hours, I went from confident to frightened. We had to make it two visits, not one, because I couldn't keep going. The visit where he went over my scores was surreal. My tests said I had a moderate neurocognitive disorder.

Questions, please?

Hi, Bill, and welcome to the forum. Are you anywhere close to Pittsburgh? There's an Alzheimer's Disease Research Center there, which has expertise in early-onset AD:

University of Pittsburgh
Alzheimer's Disease Research Center
3471 Fifth Avenue, Suite 811
Pittsburgh, PA 15213
Phone: 412-692-4622
Fax: 412-692-4526
Website: http://www.adrc.pitt.edu

quote:

Originally posted by bsinhc:
Hello to all who post here. My name is Bill and your posts on this forum are very informative and helpful to someone who doesn't know if he has AD and hopes he doesn't but if he does, knows there are those he can talk to about it.
...
So, I called the local chapter and they are sending me a list of doctors who specialize in this disease so I can get checked out. I'm really hoping it's something else but knowing my grandfather had it and knowing my luck, if it is, it is and we'll deal with it as best as possible.

Hello Bill, Welcome to this site. I'm very sorry to hear about your problem. Early On-set Alzheimer's is difficult to detect early. In three years I got fied from 3 jobs before being diagnosed. My problems with confusion, reading directions and getting lost were well advanced before thest testing could catch it. After being diagnosed I wanted to remain in denial so I went to Johns Hopkins in Baltimore for what amounted to a 5th opinion. After they agreed I began to think the doctors might know best. But, it took 2 1/2 years of testing before Alzheimer's was even brought up!
Good Luck bud!

For what ever its worth my addition to this conversation:

I took a simulated driving test when my wife and doctor didn't think I should drive. I flunked it miserably.

I was then told by my Neurologist, "You have Alzheimer's." That shook me.

I took the neuro-psychometric after the diagnosis. That is all I needed. The findings validated the history. I wasn't having the memory problems initially that is typical of AD. This confused the issue, But my multi-tasking, executive functioning, and visual problems were on the underside of the chart. A level so low suggesting "Challenged".

The neuro-psychometric (P-N) is subjective in that the test results are interpreted by the person administering it. As validation of the first P-N I had it done a second time two and a half years later by a different neuro-psychologist. Findings were the same, I had digressed a little in the same functional areas, not badly.

The current portion of this thread speaks of one of the more severe misunderstandings we face with this disease. Unless we are standing in the corner drooling our diagnosis is subject to doubt. This defeats diagnosis, denies treatment and relegates us to more rapid progression of our disease.

The medical profession in its confused thinking is just no better than the rest of us.

I wolud like to remain in denial. I'm sure that many others feel there is something wrong with the diagnosis, But.... Why does my MRI and PET scan show a white area on top of my cerabellum that is refered to by pros as non reponsive? I call it "Brain dead, and it will do nothing but grow!

Thanks for everyone's reply to my post and the information that was provided about the ADRC in Pittsburgh. It is appreciated and I am going to set up an appointment with them to get checked out as soon as possible. Especially after reading more posts on this site because I can really relate to what most of you are experiencing.

Here's why I say that. When I fell in 2005 and hit my head on the concrete, it was concussion #4 and the one that really rang my bell. In the first 8 months after my accident, I had no sense of smell, taste, nor did I know my birthdate, soc number, or anything that dealt with numbers. I had trouble seeing, couldn't remember a damn thing, my word finding sucked, and had daily dizzy spells, balance problems, and migraines that made life a real challenge. Plus, I got tired alot for no apparent reason.

Move on to late 2008 and most things improved to a point that was tolerable. My sense of smell and taste returned, my weekly migraines were reduced to monthly, I was driving during daytime hours but rarely at night and stuck to 2 lane roads, staying off of the interstates. Memory of important dates and numbers had returned but I still had dizzy spells, balance problems, and some short memory problems but they weren't as bad as they used to be. My word finding issues were few and far between, too, and I didn't get tired as often as I used to. So, I felt I was finally moving forward.

That was, until a few months ago when I began to realize, I was heading backwards. My word finding issues have returned in earnest which makes me feel really stupid when I'm talking to someone. I know what I want to say but the word just won't come out so I describe the dang thing. I ask my wife what day it is because I dont' know and can't remember. I start talking about something then stop because I forget what I'm talking about or what point I was trying to make. My short term memory isn't what it was so I bought a small tape recorder and carry it with me all the time, except when I put it someplace and can't find it for a couple of days. When I drive my car, I can't have the radio on and no one can talk because if they do, I can't concentrate and feel as though I'm going to wreck. I'm also having tiredness/sleep issues along with sporadic temper flair ups, which really irratates me at times because I can't control them.

Add to that the recent issue I had when I went to be re-tested by a specialist who has dealt with alot of people, old and young, who have had a concussion and is well known in his field. I take a test that I've taken 6 times before and do so poorly on it the doctor re-tests me with paper tests containing 50 words and pictures that confuse me to the point that I can't recall more than 10 of each. After which he berates me for trying to deceive him even though my wife and I tell him, I'm really having problems and appear to be going backwards but he doesn't want to hear it or can't believe it because I don't look as though I should be having these types of problems with remembering those pictures and words.

I hope I'm not boring anyone here but figured I'd tell you what I've been through. I'm Thankful I found this forum and know I won't be alone coping with AD, if I do have it, if that makes sense.

Thanks for your time.....Bill

quote:

I take a test that I've taken 6 times before and do so poorly on it the doctor re-tests me with paper tests containing 50 words and pictures that confuse me to the point that I can't recall more than 10 of each. After which he berates me for trying to deceive him even though my wife and I tell him, I'm really having problems and appear to be going backwards but he doesn't want to hear it or can't believe it because I don't look as though I should be having these types of problems with remembering those pictures and words.

My visual memory and interpretation of images are both way lower than most of my functioning. Visual spatial reasoning, I think it said. But, my verbal abilities are relatively intact, so I sound alright in casual conversation. Lots of early dementia people are that way.

And unfortunately, there are doctors that, when presented with something they didn't know, will get angry and attack the patient.

Alan, that is exactly why I think my doctor freaked on me and the results of me tests. I sounded very "normal" in the initial interview but didn't and couldn't perform up to the standards he was expecting for the tests. So, he decided on his own that I was trying to deceive him when in reality, one of my bad days had really surfaced for which I hoped he would see and send me to someone who would test me further so I could find out what's going on.

Also, Alan, or anyone who reads this, I really need to know, does any of you have say a week or a couple of days in a row where you aren't with it then, things go back to normal but for those few days or a week then you drift back to bad days and you can't control when it happens? That is what's been happening to me in the past 6 months. At first, I thought it was due to the weather but after tracking it, I now know that's not the case.

Thanks for listening and your input....Bill

Hi Bill:

This is how it seems to work with me all the time. There are times I wonder do I really have this crap, other times when I know I do no doubt at all.

Ours can be a subtle imp than turn into an obtuse imbecile.

Sounds like you should simply go to another Doc on your own.

Mike, that's exactly how it's been for me in the past 6 months and why I tried to tell myself it was the weather. But after the recent test fiasco and having read the posts on this forum, I know there's got to be more to it than I want to admit to. I am going to make an appointment at the center in Pittsburgh JAB posted above as soon as possible.

Thanks again for your input as well as all of the other input from the people on here, you have really helped me..... Bill

Bill, Mike speaks for me, too. With me, I'm so eager for a sign that I don't have dementia, that I'll get excited when I actually remember something. I'll think, "Ha! I'm back!! My memory is fine!!!" That always lasts less than an hour, but in a way it's nice, feeling better.

Can you tell more about how you blamed the weather?

How did the call with the Pittsburgh clinic go?

Welcome to these message board, Bill.

You have a history of repeated traumatic brain injuries and you already have evidence of cognitive impairment. I don't know what your examiner was thinking about. You could have the same neuropsychologic picture as Alzheimer's disease but the etiology of your problem would be traumatic brain injury. And that's if other conditions such as hypertension, stroke, nutritional deficiency, hormonal deficiency and so on were ruled out.

Please, find a neurologist and neuro-psychologist who are experienced in diagnosing and treating dementia. Use this time to get your legal and financial affairs in order, whether or not you have Alzheimer's disease, since you already have some degree of impairment.

Come back and tell us more about yourself. There are many people here who will help you and support you.

Iris L.

Iris L.

Alan,
Earlier this year, I noticed everytime we had a low pressure system pass through, my dizzy spells, balance, and brain fog would intensify. As it was the day I went for re-testing, there was a deep low pressure system in the area and I was having problems with all of them. But, while tracking those issues I also noted that wordfinding and forgetting what day it is come and go as they please no matter what the weather is. So, I don't know if it's just a coincidence with the low pressure systems or if they really do have an affect.

As for calling the Pittsburgh Clinic, I called them and they are sending me some papers to fill out. I will let you know how things go after I get them and make an appointment.

Iris L.,
Thanks for the Welcome, it is appreciated. Neither my psychologist, wife, mom, nor I can figure out why the doctor reacted like he did. As I mentioned earlier, I wasn't having a good day the day of the re-testing and was going to cancel the appointment but didn't. My mom and wife both said they can see a change in me in the recent months and my wife told the doctor that but he didn't want to hear it. I haven't talked to him since then and don't intend to, either. My wife wants to call the medical facility he works for and complain about the way he behaved but I won't let her. The way I look at it is, if he hadn't reacted the way he did, I probably wouldn't have checked out the AD site which is when I realized I can relate to 6 of the 10 signs for AD. Possibly this was the "wake up" call I needed to have myself checked out, if that makes sense.

Bill

Bill,I'd let your wife report the Dr.He had NO right to treat you that way....Find a better DR.........
BTW I have Vascular dementia after we were told I had AD.
I was 57 when 1st dx I'm now almost 70 still doing fairly well........I have my days,lol......

That is so wild, Bill, thinking that you might be affected by the weather!! I don't know how it could, but then I don't know much of anything some days.

Yay for the Pittsburgh Clinic. That's a strong step in the right direction.

Bill, if your doctor acts that way with you, don't you think he's that way with other patients? Do what you want buddy, but my vote is for reporting him.

SnowyLynne,
I never heard of Vascular Dementia and find it odd that you mention it because I have a blood disorder called Lupus Anticoagulant. I just went and had my blood tested last week and the doc said I'm boderline again with too many red blood cells. I'll need to remember to tell the folks at the AD center about that too.

Alan, I know it sounds far fetched to be the cause of things getting worse on those days but I did track it. But, as I said, it doesn't affect the other things that I've noticed an increase in so it's probably just a coincidence.

As for reporting the doctor's behaviour towards me and my wife, I am going to do it after I get checked out at the AD center. It's one thing to say "hey your doctor treated me bad the last time I saw him" but even worse if it's proven I have something going on for which he should have followed through on and refered me to the AD clinic on his own.

Bill

Hello again Bill.

Let me throw my 2 cents in as a pediatrician who is retired on disability due to memory loss. I've had a 20+ year history of cognitive impairment. Two years ago, I complained to my internist that I was having trouble functioning. His unprofessional reply was to ask me if I had any hobbies. I called Medicare and asked what I should do. They told me to complain to the Medical Board of the State of California. I didn't want to get him in trouble with the state because we were both doctors. I still thought of us as being colleagues although obviously he did not.

Fast forward to last year when the possibility of Alzheimer's disease came up. I was afraid that too much time had been wasted since the internist did not take me seriously and did not immediately start a diagnostic work-up a year earlier. I did put in a formal complaint with the medical group he was part of. They told me he had taken early retirement due to his own medical problems. I never did complain to the state medical board.

On the other hand, regarding myself, when I first began having problems performing my medical duties over 20 years ago due to my memory impairment and difficulty following conversations, I was told that patients had started to complain about me. I was very hurt because previously I had always had glowing reports and commendations from patients and colleagues alike. I resigned my position as Chief of Pediatrics of my medical group and gave up my administrative duties, thinking I was simply overworked. Shortly thereafter I was placed on probation. I did not understand why.

During this time no one suggested that I might have a medical condition nor did any of my colleagues perform an investigation into my sudden deterioration in professional performance. I was just "disciplined". I was complained about but nothing constructive was done for me. Perhaps my condition could have been discovered and treated 22 years ago and I might still be practicing as a pediatrician. Or probably not, but I would not have felt so bad for so many years.

My vote is to put in a formal complaint and let this be used as a learning experience for the examiner and his department. People of all ages deserve to be evaluated for memory loss just as for any other medical condition. Memory loss patients still need to be treated with dignity.

Iris L.

Bill:
I did not see your 1 am post because it took me over an hour to compose my own post. I have lupus too! So do others on this board!

Lupus is a known cause of cognitive decline. The rheumatologists are just beginning to take cognitive dysfunction in lupins seriously. Previously I was told I had atypical depression. I have been prescribed Exelon patch and Namenda. Although I was told by an Alzheimer's medical researcher that these drugs are only effective for patients with the brain pathology of Alzheimer's disease, they have been working for me. After what she said, I never wanted to see her again. But now, since I am improved, I believe I should take my own advice and let my improvement be a learning experience for her and her department.

I suggest you do a google search for anti-phospholipid syndrome (APS) and dementia. APS is a known cause of strokes and mini-strokes and is present in 50% of lupus patients. These are causes of vascular dementia, which is the second most common etiology of dementia after Alzheimer's disease. The main web page has info on some of the many types of dementia. There are many others besides Alzheimer's disease.

Stick with us, Bill. You'll learn a lot here.

Iris L.

Ok guys I think I know all of you .
Yesterday I took the "Psych,Neuro" test.
3 1/2 hours of questions and answers,.
My wife took me and gave her input during the verbal part?.
So I sat there and listened to her and I said nothing, what could I say she said nothing that was not correct. I was devastated, and nothing she had not said to me. So why so bothered ?.
I don't have a clue.
Hurt Oh God it hurt but what was I to do?
Anger that was what I felt next, Betrayed , and left to the Lions,
But in many ways she is right,and I see that sort of..sort of.
So here I am
getting progressivly more Drunk and feeling sorryfor myself.

The test it self I felt went very well I guess the result will tell.
Mentaly I am feeling very low.
One of the questions was ..Have you ever thought about taking your own Life ....
...
Not til now.
I had thought til now that the fight was worth it,is it?
I have to wonder now.
So the Jack flows.....
I probably am not brave enough to do anything about it yet.
Thank God for you guys

Sven, I think what you experienced when your wife was talking, was that you had a cumulative overdose. Although you heard nothing new, maybe you'd never heard that much at one whack, so you became overwhelmed?

Way back when I was a drinking man, my favorite was vodka, straight from the freezer. Never cared for the taste of bourbon. Not even Mr. Daniel's, which I think not liking is illegal if you're from Tennessee, which I am. Well, Tennessee, Florida, North Carolina, and currently Colorado.

I've had a few afternoons like you're having. Not really suicidal, just making sure I have all my options on the table. Deep, painful thoughts, but sometimes I guess we just have to go visit that inner dark place.

Is the fight worth it? I'll tell you exactly how I feel: Yes, the fight is worth it, probably 90% of the time. No, it isn't worth it, I feel around 10% of the time.

You still awake?

My reaction was exactly the same when I had my first Neuro Psych. Took me a week to drag myself up from depression.

Funny, this crap never stops. With me, first it was, then it was a long list after, and after AD the list just doesn't stop expanding.

Death do us part with it, but if the Buddhists are right that we are back again to do what we didn't get finished.

I felt so good when I gave booze up, bowed my head and asked my higher power for help. I did that with many things finally AD. Each time getting it over I felt better for the effort.

My most recent is food, admitting I have been out of control compulsively overeating for a year and half. It has to stop, I can't stand it.

I tried an Overeater's Anonymous(OA) meeting tonight. Omygod the meeting sucked. Guess I will look for another one.I can't control my intake. I get sick when I eat too much, Geeeeeeeeeeeeeeeezzzzzzzzzzz!

I could stop at the ice cream store but who is that going to hurt?

Like you Sven I have little choice but to keep trucking. None of this crap is easy, is it?

Is anyone interested in the chat room? We have our own room; we don't have to be with the caregivers. I'm usually there every evening between 7 and 8 west coast time.

Iris L.

Iris, I would like the chat room, but I never see anyone in our forum. I will try to be there this evening if I can figure out the time change. I know you are an hour ealier...guess I'll set up my organizer to send me an alarm.

Cheri, I didn't see your post until now. I usually begin in chat room 1. If you or another person stop by, we can then move to chat room 4.

I was talking with lawyers all day about my moldy townhouse that is so I got distracted today. I'll look back tomorrow.

Iris L.

Iris, I forgot to set the alarm on the organizer and I forgot to log on at the right time. I will try to do better tomorrow. I actually remembered when I was scrolling down to read your post. I will leave my husband a note to remind me that might help.

Don't you hate it when you know you are suppose to remember to do something you want to do and can't remember what it is. I miss out on a lot of things because of it.

It was nice chatting with you and Cindy tonight Cheri. Sorry you got booted out by the server. That happens a lot.

I usually there from 7-8 pm pacific time.

Iris L.

Is that why I was having problems? I rebooted 2x got in after the 1st then was gone again. Thought I was having a computer problem, but I've never had that problem on this computer before. I will be back again now that I know the time...adjusted for Colorado. lol

I just read this thread and it has been really helpful. I was Diagnosed with MCI a year ago, have been steadily declining, have not worked much for the past five months and have been on the Excelon patch for four months. I had a neuropsych re test early this month and although I haven't gotten the written report yet, because I was eager to hear, the Psychologist (who is wonderful) met with me to go over the results verbally. I don't recall all he said and will get the report on Thursday, but the bottom line was there had been a substantial change (which I was fully aware of) which would mean a change in diagnosis. He suggested I start looking into SSDI. He added that working as a psychotherapist I could be sued for practicing with my new diagnosis. I was afraid to ask about the specific diagnosis at the time, but I guess we all know what comes after MCI.
So.......... I saw thw Neurologist for my regular visit last week and told him the above. He had a little fit right there in front of me. Basically he said I was too young for SSDI (58), losing my career would deflate my self esteem, his opinion is that I only have MCI "and who doesn't have that", and that he would not fill out the SSDI papers. Of course this opinion is without even looking at the report. It was clearly an overreaction. I went into therapist mode and sat there looking at him and said "OK, we can talk about this next time when I have the report". Of course inside I was furious, but most of all terrified. I am self supporting which I can not do any longer, am at this point in a financial mess and fearful I won't get SSDI. He is prescribing my Excelon patch and knows my deficits, but I think because I look good, and can speak to him intelligently he gets confused about my actual condition. It feels terrible to be dependent on someone else to get SSDI. I wish I were faking or even exaggerating my symptoms!!!
Does anyone know how the Neurologists opinion impacts the SSDI process? Could he actually get in the way?

Sounds like you need a diff.neurologist......

quote:

Does anyone know how the Neurologists opinion impacts the SSDI process? Could he actually get in the way?

The neurologist's opinion carries tremendous weight. If that doctor says you aren't disabled, it would be very unlikely that you'd be considered disabled by a judge.

Your neurologist's strong emotional reaction is way out of line. But, you can't just leave a doctor out there, swearing you couldn't be disabled. Just me thinking here, nothing official, but maybe you could call for an appointment, and specifically say that for the appointment you need the doc to go over your evaluation and diagnosis with you. You could also sign a release between him and the psychologist, and convince him to call the psychologist.

Hello Gina, It's nice to meet you on these boards but I'm sorry you're here. I'm a former pediatrician with lupus and a diagnosis of cognitive deficit n.o.s.

I received long term disability and SSDI 20 years ago based on a diagnosis of depression. Obtaining SSDI is based on your inability to be employable, not just on a diagnosis. There are criteria to meet. Many people have gone through this. There are several threads on this board and the "I have AD under age 65" board about applying for SSDI. You can use the FIND feature to search for those posts.

To answer you question, YES your neurologist can botch up your application. I was dropped from SSDI after they read my PCP's notes. I had to appeal and finally got re-instated.

Your neurologist was completely out of line. One day we'll all have to post about the stupid, inappropriate, insensitive things our doctors have said to us. The vast majority of doctors are ignorant about early dementia and the many reversible causes of early dementia. You need to be evaluated by a neurologist who is extremely experienced in early onset dementia.

Once you get your written report, get a second opinion from an Alzheimer's Disease Research Center in your area. Your local Alzheimer's Association can refer you. Call the 24 hour Helpline at 1-800-272-3900.

You will need a lot of support. Keep posting here and let us know your progress. Many knowledgeable people will have advice for you.

Join us in the chat room in the evenings. I usually chat from 7-8 pm pacific time. There is a chat room just for patients. If there is no other patient in chat room 1 when you arrive, the regulars can help you.

Iris L.