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    • CommentAuthorAdmin
    • CommentTimeMay 29th 2012 edited
     
    I usually write blogs about our neurology visits. They don't deserve blogs anymore. Nothing makes me question my sanity more than these *&^#&!* neurologist visits.
    EVERYONE - my relatives AND friends - can see Sid's cognitive decline. EVERYONE. The last time we were at the neurologist (9 months ago), his mini mental score had slipped to 21, which told me that he finally stopped outwitting the stupid test (He had been getting 29's, and we know he doesn't function at a 29).

    Today, for the test, he knew the day, the month, the season. Does he ever know these at home? Noooooooo. He followed a 2 step direction. Can he do that at home? Nooooooo. He was able to remember the 3 words after 5 minutes. Can he do that at home? Nooooooooo. He got a 27.

    According to the doctor and the test, Sid hasn't changed in six years!!!!!!!! Realistically speaking, the doctor knows that his functioning is totally different away from the test, but he still goes by that test for assessing him in his notes.

    I was just about ready to pull my hair out of my head and scream. He did recommend a complete and thorough neruopsych exam by the psychologist who gave it to him 6 years ago, and I am going to have it done. If for nothing else, to at least get a realistic (hopefully) evaluation. Six years ago, that neuropsych wrote that Sid's judgment was poor and shouldn't handle money or drive. Six years ago, he was doing both. I can only imagine what he will say now. If his tests don't show any change, I am going to request a psych ward committment - FOR ME!

    In the meantime, yesterday, I put the big wheelchair in and out of the car exactly the way the PT showed me. I had no problem, and felt nothing. Today, I can't turn to the left. The entire right side of my torso, radiating to the middle of my back is in agony.

    AND just to add to the situation, Sid lost his keys. Doesn't know what he did with them, when he last used them, or where they could have gone. That would be the house and car keys. (I know he shouldn't have car keys, but he can't even get into the car without help, and he can't move his feet once he's in it, so he's not going to be driving away.) I like him to have the keys in case I misplace mine or lose them when we are out together. Now I have to turn the house upside down to try and find them. Which will be difficult to do since I can't turn or bend.

    Ah yes, another typical day in DementiaLand.

    joang
  1.  
    Joan--Clearly, the MMSE isn't an appropriate assessment tool for Sid. But I presume, for the sake of science, the doctor will continue to use it.

    Here's my question--knowing this, why do you want to know Sid's score? I ask this because, knowing Steve had test anxiety all his life and thus, performed poorly when under pressure, I told his neuro not to tell me his score after the initial visit. I knew Steve would inevitably decline, there was no point in rubbing salt into the wounds by hearing lower and lower scores. I lived with the man--I could see his level of function going downward on a daily basis.

    Unless there is some valid reason for knowing the MMSE score (to qualify for some sort of assistance, for example) I would tell the doctor not to give it to you. If there was some sort of treatment available that correlated to the score, then that would be a valid reason for knowing it; but unfortunately, we all know that there isn't. In this case it is serving no positive purpose and is just irritating you--and obviously, you don't need that.
    • CommentAuthorms. magic
    • CommentTimeMay 29th 2012
     
    DH does way better on the MMSE than he does in "real life."
    Go figure.
  2.  
    Joan: another fun visit to Dr. S....??
    DW hasn't known the day, month, where she lives, etc for 4 yrs..two years ago when the assistant asked if she remembered a word after two minutes, DW replied I have AD don't act so silly. Last visit was so unsettling for both of us, I told Dr S I saw no reason whatsoever for semi annual Monitoring visits. I asked Dr S if he'd be comfortable treating DW on an as necessary basis, letting our PCP handle the minor issues. He had no problem with that sort of patient/md relationship. Our PCP communicates with Dr. S keeping him up to date with her records + socially and professionally the two of them are friends.

    With no dramatic Psyc/anger/issues other than the continuing ongoing decline in cognatve and communications ability our PCP has handled the only new problem, sundowning hyperactivity, with the addition of Ativan to her regimen.

    We talked about getting an psyc evaluation and I asked Dr S, Why? What will you and I learn that i don't already know? What changes would you or I be able make based upon what the Psyc test would reveal? Is there any new or different medication or treatment modality available?

    Bottom line, we agreed that, yes, current status quo is the typical Alz horror scene, but all that can be done has been implemented, and for now things are manageable. I couldn't justify putting DW (or myself,) thru additional testing when by the end of the converstion we concluded that other than adding documentation of the obvious, there was a zero return on the emotional investment
    • CommentAuthorSusanB
    • CommentTimeMay 29th 2012
     
    Joan,

    First off, I am sorry that the neuro appointment was so disturbing!
    I think that if we took a consensus of past posts re the MMSE we would find that at best, it is a poor measure
    Of the dementia process and at worst, it is a vehicle for confusion and false hope for loved ones of the patients.
    That being noted, I wonder what your neurologist hopes that he or you might gain from a new full eval? Has he questioned the diagnosis? We know that the reality of Sid's functioning is a clear picture of decline. Please put yourself through the ordeal of the eval only if you believe you will gain something from it.
    As for your sanity, I will personally vouch for that.

    Hugs,
    Sue
    • CommentAuthorcarosi*
    • CommentTimeMay 29th 2012
     
    What marty arranged is similar to what we did.The exception being that I changed his neuro-psych Dr. to get that care. I did that when the N-P Dr.we'd been seeing gave me a list of tests to arrange for DH, after I'd already made it clear that any further testing was to be event driven. Our PCP was informed and in contact, but preferred the N-P Dr. handle the Psych med matters. My DH, was already multiply Learning Disabled. On his original Neuro-Psych testing he scored 11 on the MMSE portion,.Other parts he refused to even attempt.
    If he can't deal with the testing and/or the treatment to be done as a result, why put him through it? His last MMSE--just to see--with the new DR. was a 4.

    He is now placed. He still knows me, can hold small conversations; is incontinent, and has major scattered memory issues. He also, now has CHF complicated by a Heart Murmur and Aortic Stenosis. The latter conditions require close monitoring, and he accepots that, but the BP monitoring and periodic Blood work isn't any big dealto him. MRIs,CT scans, etc. are.
    • CommentAuthorAdmin
    • CommentTimeMay 29th 2012 edited
     
    Here's the the situation as I see it:

    Dr. S. feels badly that Sid is so young to have this disease and wants to do something to help him, but by his own admission, there is nothing that can be done. He even suggested I take him to the Mayo Clinic for a complete physical and mental evaluation to see if something could be done to reduce his medications and help his physical condition.

    I, on the other hand, feel that Sid has two progressive, incurable diseases that are going to run their course. Diabetes and Alzheimer's. What I want for him is to be out of pain from the physical, and as happy and content as possible from the mental. Other than that, I am not running to anymore doctors for anymore tests, and I am not going to treat anything else that comes along except for comfort's sake. After reading your comments, I agree - it's a waste of time and energy to have the neuropsych testing. I know how he is functioning, regardless of any testing.

    But it still drives me nuts that he is able to do during the test what he absolutely cannot do at home. I knew from the minute he got into the car this afternoon to go to the doctor that he was having an "on" day. He just seemed more "with it" than usual. 50 miles later, as we were approaching the exit, he told me what lane to get into when we took the exit to the doctor's office. He told me which street it was on; told me which building it was. Yup. For sure, I knew it was going to be one of those days when I was going to sound like a lunatic when I described his functioning.
    joang
    • CommentAuthorxox
    • CommentTimeMay 30th 2012
     
    L seems to do best on her annual neurological exam. 29 on the MMSE this year, I bet I can't get a 29. But FTD and not Alz so the test is even more inappropriate.

    Fortunately her neurologist is a specialist in dementia and is developing other tests. L showed an inability to take in facial expressions or tone of voice. Some speech decline was noted (word loss and substitution, no grammar problems). A decline in working memory was noted. Getting the MMSE score made her feel better about herself (she is very familiar with these tests) but also tired her out so she did worse on other tests. And that itself is important because it showed how quickly she tires.

    It is nice to hear of a doctor who wants to reduce medications. Most of our doctor visits ultimately revolve around changing doses (not too much) and to provide me with more information. And most discussion between me and her doctors happens outside of the office visit.
  3.  
    I did not believe the tests were all that necessary and stopped them the last two years of my DH's life. They were used in the studies the doctors were engaged in, that tracked the progression of the disease in patients diagnosed in their 40's, 50's, 60's and 70's, (explained to me by the clinical psychologist) and were not used in anyway whatsoever in determining what medication he/she should be on at that time.

    The tests upset my DH immensely. He knew he was not answering questions or drawing the clock correctly and it depressed him. He'd ask, "What's wrong with my brain? I know that stuff!"

    I loved my DH so much that I didn't want him to be upset or depressed. My job was to keep him happy, comfortable and free from as much stress as I possibly could. So, I made an 'executive decision' on his behalf. When they called to arrange an appointment in September 2008, I said we'd need to reschedule and I'll call them later. Never did. He died in November 2009.
    • CommentAuthorWeejun*
    • CommentTimeMay 30th 2012
     
    Forgive me as this could be perceived as slightly off topic, but I think it's close enough. We quit the testing several years ago. My DH always did well on the MMSE so I jumped at the offer for a day-long neuro psych evaluation. The poor man was exhausted and frustrated when it was over. When we went back for the appointment to get the results which showed him to be severely impaired in many areas, he sat there like the educated professional he was and said he understood what was being said. Of course he didn't really. We never had any more tests.

    About a week before his death four days ago I began to consider the possible benefit to my peace of mind if I could get some answers after he died. A dear friend did the Internet research for me and suggested I contact Texas Tech University Health Sciences Center in Lubbock, Texas. I was able to make all the necessary arrangements just in the nick of time and his brain was removed and sent to the Garrison Brain Bank for autopsy and research purposes. I was told I should receive a complete report of their findings in 6-9 months.

    Everyone in the family believes DH would have been supportive of this action on our part. We hope in some small way to contribute to research that might help others coming after us.
  4.  
    A very courageous decision on your part.
    • CommentAuthorabby* 6/12
    • CommentTimeMay 30th 2012
     
    Joan,

    Despite the boatload of neuropsych evals H has had he has never had the MMSE. "...Sid is so young to have this disease..." This is part of my story as well. Especially because of the age at which he started to show symptoms he was treated as a medical mystery. It has only (only!) been in the last few years that the decisions about testing have fallen to me. Now that he is progressing rapidly the general N has pretty much lost interest and was in the process of transitioning H to semi annual visits.

    Weejun, I am sorry for your loss and send sympathy and wishes for peace to you. In a health care proxy done several years ago H also donated his brain to research, for the same reasons you stated.
    • CommentAuthorElaineH
    • CommentTimeMay 30th 2012
     
    Weejun* I really understand your decision about getting answers for your peace of mind. I too would like to know what I actually dealt with all these years. I don't know if I will actually act on that, but it is something to think about. I pray for comfort & peace for you too.
    • CommentAuthortexasmom
    • CommentTimeMay 30th 2012
     
    Weejun---so sorry for your loss, but thank you for jumping into this conversation and adding this important information. I have already filled out the paperwork to have my husband's brain autospied (which includes having the tissue used for research), because regardless of the doctors who now say they can be 99% sure with the pre-death testing available now, and my husband had a lot, I think it is important information for my children to have. In our case, the fee for the autospy will be waived due to the fact that he is an existing "patient" of the physician group affiliated with the research facility, but every place is different, so it is good to research all of this in advance. Also, I have the paperwork with all his medical documents in case something happens while I am out of town, because I understand that the call to the research facility is one of the first that needs to be made.
    •  
      CommentAuthorJudithKB*
    • CommentTimeMay 30th 2012
     
    What I would like to know and no one seems to have the answer. Do these tests that your spouses took give any
    indication of the lenght of time before the end of life. I know that this question is probably somthing no one knows. Why I ask is because my dh also has a severe heart conditon and COPD and he is 65 ...dx in 2007
    by neuro..in 2006 by family doc.

    I probably am not wording the question right, but is it the decline in factors relating to a decline in test score a more accurate form of end of life dx or is it other physical conditions...or both...or who knows?

    I think this question is the question I would like answered the most...because when your dh is only 65 and you are considering placement (which I am) which of the factors are the most important to take into consideration for financial reasons. At 65...do I have enough funds for him to be there 2 years...5 years..10 years...

    Thanks for any comments or answers you might contribute to my most grave concerns regarding my dh.
    • CommentAuthorabby* 6/12
    • CommentTimeMay 30th 2012
     
    Dear Judith,

    I have the same concerns, and I understand.

    But, to try to stay on topic....

    H's last neuropsych eval was just a little more than a year ago. The doc said in a summary that what concerned him most was the pace of the decline. (H also has a seizure disorder.) But, no, he would not put a timeline on it. If you want me to, I will look at the report and post which tests he was given. I am pretty sure the MMSE was not one of them. Let me know.
    •  
      CommentAuthorJudithKB*
    • CommentTimeMay 30th 2012
     
    Thank you. I understand the doc not wanting to put a timeline on it...after all they really don't know. Pace of decline that your doc was concerned about is interesting. My dh has declined alot in just the past month.
    No...I don't need to know about the tests...I wouldn't take him to have any tests anyway...thanks.

    But, I would like to know which of the factors (his other medical conditions) or his AD pace of decline have the most adverse affect and/or do the other medical conditions affect the AD pace of decline or
    the AD pace of decline affect the medical conditions. My dh also has night time seizures. Sunday night was the worse yet...all night long. Like being in bed with a moving objection jumping around.
  5.  
    Weejun* I really understand your decision about getting answers for your peace of mind. i too don't know if i could go through with that.
    It might help towards a better understanding of this demon of a desease...may be even help towards finding new meds that may be of better help and control..
  6.  
    Joang, when my wife was first diagnosed I took her to a neuro recommended by our local geriatrician. He confirmed the diagnosis after the MMSE and a day-long psych eval. He put her on Exelon and Namenda. After the 3rd visit, when he seemed to be uninterested in her condition, I fired him. Since then her PCP has taken care of everything. A couple of years ago we took her off the Exelon and Namenda with no apparent change. She is now only on meds for her diabetes and hypertension. She sees the PCP every 3 months. Each time she (the PCP) asks my wife a few questions, but gets no answers. She then asks me for my input. The only question now is when will she qualify again for hospice. There's nothing else to be done.

    In your situation, I see no need to keep going to the neuro. There's nothing he can do that a good PCP couldn't do.
    • CommentAuthorabby* 6/12
    • CommentTimeMay 30th 2012
     
    Judith,

    I have to have two answers. One is that after each hospitalization for seizures I feel H suffered cognitive decline. It is my belief that this was due at least in part to the administration of ativan- iv- far more than the PO dose given at home-fentanyl (sp) and another drug that I don't remember and don't have any record of this for reference. (The name versed comes to mind.) These were major seizures and he was once dx "status epilepticus".

    Neuro said, no, no and no, this is not possible other than short term "circuit disturbance".

    My conclusion, and neuropsych's as well, from what I can understand is that the dementia is the main thing. I don't know if seizures can cause the frontal lobe deterioration, but that's just it; I don't know.
    •  
      CommentAuthorJudithKB*
    • CommentTimeMay 30th 2012
     
    Thanks so much. I don't know either. Someday someone will know the answers, but it will be too late for most of us here.
  7.  
    When I graduated from Neurology school, I still only scored a 30 on the MMSE test. My dean told me "If you can't dazzle them with brilliance, baffle them with "neurology jargon".
    • CommentAuthorZibby*
    • CommentTimeMay 31st 2012
     
    We dropped visits to the neurologist a couple years before hb passed. Discussion of the value (or not) of MMSE is discussed in other threads. Exelon, namenda stopped and I could tell no difference. GP took care of us which eventually meant no meds. Tests seemed to me to be only for the purpose of possible info for the neurologists. Hb had no health issues except high bp; so that was a blessing.
    • CommentAuthorPavane55
    • CommentTimeMay 31st 2012
     
    I can understand the frustration about neurologist visits. I get upset when I go and when that dies down I start getting anxious about the next visit. We have been seeing this doctor - is considered the top excpert in the area of neurologists in private practice - on AD. She diagnosed him with AD in 2006 - it had been MCI for years and he was already on Aricept and Nemenda when he got the diagnosis of AD. He has had MRI, MRA, Petscan, Neuropsych testing - all which confirm that his brain his shrinking and that he has AD - plaques and tangles. Our last visit, I gave her my usual list, wandering, irritibility, more forgetful, more etc - same list every time. She looked shocked and asked me if he had fallen and hurt his head - and ordered an MRI on his which of course was "normal" she said. He knows the MMSE by heart - most of his dysfunction is in Excutive Functioning and from his FTL and tells her what the next step in the MMSE is going to be. . I come away feeling like I am a liar, imposter, a pretty sick woman that I am trying to portray my husband as ill for some benefit to me. I am always nice, as she has the power. BUT, we do have the Byrd Center here which is associated with USF and they have every type of neuro specialist you can name and they are devoted to treatment and research of AD. I was finally able to get him into their care. I explained to the doctor what my experience had been. That doctor told me that some neurologist who even specialize in AD are not at their best in following up with their AD patients. I guess their role is done with the diagnosis and a few followup visits. They said no more tests, unless something acute arises - visit once a year, they will provide sending me the Rxs for his refills when I request them. She told me, that it isn't going away, isn't going to get better. I think some of the hardest times I have had throught this process has been with experts who know what is best for us after a ten minute visit. I am so relieved. I don't have to keep trying to find ways to make someone like me that obviously wants us to go away .I don't have to keep trying to think up ways of trying to get the past doctor to tell me that, yes, these are the symptoms of AD and not act like I am lying. I have respect for the doctor, but our time together was done. I don't hold it against her as it has to be hard for doctors to work with folks that just aren't going to get better.
  8.  
    I think we all expect too much from our Neuro's. They are dealing with a disease that, as of now, its presence can only be confirmed 100% by autopsy. AD's onset age varies greatly, within the adult population and nearly every AD patient, as documented just by the posts in this thread, has multiple medical problems. Factor in that Alzheimer's is a disease that progresses at grossly differing rates in different individual. With the wide array of variables and few definitive answers available to the medical profession it's obvious why it's is impossible for a Neuro or anyone else other the G-d to correlate a time line to end of life with an oral or written mental tests which measure only what is going on with that specific patient at that precise moment in time.

    The only area of medicine I've encountered that is willing to talk about a time line to end of life is Oncology. With cancer you have definitive diagnostic tests. With AD you may go years from the intital onset of symptoms to finally seeking medical advice. With cancer an MD can visualize and measure via a wide varity of tests, scans, etc. a cancer/tumors progression or metastasis . AD testing, as illustrated in JoanG's post is provides little info that the caregiver couldn't provide in much more exact and precise terms.
    Our reality is that we're dealing with a disease that: its onset is difficult to determine, diagnostic tests have a long way to go, current treatments can do little more than fight delaying actions and manage or suppress the symptoms with varying degrees of success.
    Is it really relevant what stage number our LO is at? AD, is what it is; it is an incurable disease the we've got to cope with.
    I depend on my Neuro to work in tandem with my PCP to manage the symptoms until the present home care situation becomes unmanageable and then aide me with placement. I don't think medical science has come up with tools to do much more that that
  9.  
    ABBY
    Versed (a very short acting Valium type drug) is often combined with Fentanyl, (a powerful pain reliever), to provide “conscious sedation." It is also known as “twilight sleep”
    The two drugs, working together, provide pain relief, relaxation, and amnesia. The purpose is to prevent pain and anxiety during the procedure, and if there is any discomfort or stress, the patient is likely not to remember it.

    The combination of Versed and Fentanyl is also used in the ICU setting. It can be given to medically induce a “coma,” keeping the patient unaware of their surroundings. This can be necessary if a patient cannot be calmed, is in danger of injuring themselves, is resisting the ventilator, or has an illness that causes significant pain (such as a burn).
    • CommentAuthorAdmin
    • CommentTimeMay 31st 2012 edited
     
    I have to agree with Marty's statement on this one - "mental tests which measure only what is going on with that specific patient at that precise moment in time."

    Could not have described it better. In the Dr.'s office on Tuesday, Sid knew the day, month, year, and how to draw a perfect face on a clock. (He never knows the dates) This morning, he was having a bad pain day in his legs, feet, and knees. He needed the wheelchair for Day Care, and wanted to help me put it in the car, so I wouldn't hurt my back again. I showed him the easy way - wheels up; slide onto floor in back seat. Simple and easy - much less stress and strain than trying to get it into the back of the SUV. He stood there with a confused look on his face, and said he didn't understand what I meant (even as I was illustrating it.)

    In the doctor's office, he remembered the 3 words. Last night, when "Dogs in the City" came on, I told him I had been waiting for that show ever since we had been seeing the ads for it - every single night for a month. He had no idea what I was talking about.

    joang
    • CommentAuthorCharlotte
    • CommentTimeMay 31st 2012
     
    AS for length of the disease - it so depends on how fast the disease affects the vital areas of the brain. I don't think the MMSE doesn't really show this. I FIL was 15 years into it when my MIL died. He was still able to do daily things, was continent, etc except he was a wanderer. Shortly after being in the AD unit he no longer did these things. I am assuming my MIL was the reason he functioned so highly for so long. But, I don't think he would have scored high on the MMSE. My SIL has progressed very rapidly and I know would score poorly. My hb is going slowly but has scored lower - down to 20 on the test. But he is still high functioning in many areas including driving (if I am with him as he can't remember how to get to places or home).

    The MMSE we have discussed on other threads is just a tool but I think too many doctors put too much importance on the results by using it as a tool to how they are doing or not doing. The neuropsych test I think it the only tool that will give a more accurate picture of what areas of the brain are being affected, but still not how fast they will travel this disease.
    • CommentAuthorAdmin
    • CommentTimeMay 31st 2012
     
    Another odd thing - Yes, I am always surprised at what Sid DOES know when we go to the neurologist. But I am also surprised at some of the things he DOESN'T know. Dr. S. asked him who the president was, and Sid couldn't think of his name for a long time. Then he got it. He watches news and political shows ALL of the time. He KNOWS who the president is. But he couldn't think of his name. Last night I asked him who the president was, and he absolutely could not think of his name.

    Seven years ago, when I was just getting an inkling that something wasn't right, his PCP in Massachusetts asked him to name the last 5 Presidents backwards starting with the current one. At the time, the current one was GW Bush. Sid got that, but couldn't do the rest. The PCP suspected AD right from the earliest symptoms.

    joang
    • CommentAuthorLori,RN
    • CommentTimeMay 31st 2012
     
    We just started with a new PCP and a new neurologist. We've had 2 visits and the neuro seems determined to start husband on an AD drug. He tried Aricept and excelon with terrible GI upset. Now he's trying namenda and wants to see him again in 2 months. My husband has heart disease and diabetes so we already have too many drugs and Dr visits. Next visit with PCP I will again review with her that we want minimal intervention and drugs. I see no point in continuing with neuro.
    Weejun--So sorry about your loss. Wishing you strength for the days ahead.
  10.  
    We saw a neurologist several months ago for the first time in seven years. After the questions and observations, I made a comment about wishing he would do as well at home. The neurologist's reply, "They all do better when they're here." I think it's almost as though they're putting on a performance for the doctor.
    • CommentAuthorAnn*
    • CommentTimeJun 1st 2012
     
    I find it strange that they can put on a performance,but I know that it happens.Can anyone explain this?
  11.  
    Had regular PCP appointment yesterday. DH was perfectly "normal" while in his office. As soon as we left he asked me how many day we had been traveling and how far was it to home! This happens every time we have a doctors appointment. I don't think anyone can explain this.
    •  
      CommentAuthormary75*
    • CommentTimeJun 1st 2012
     
    I wonder if they think, for the moment, that they are back in a familiar doctor-patient setting. "Doctors help, and this doctor is going to help me get back to normal."
    • CommentAuthorAdmin
    • CommentTimeJun 1st 2012
     
    Two days after our visit, I thought - "Darn, I should have asked Sid his address and phone number in front of the doctor." He has absolutely no idea of either.

    joang
    •  
      CommentAuthorJudithKB*
    • CommentTimeJun 1st 2012
     
    The other day I posted on this thread about: Does the AD have an adverse affect on other physical conditions, like bad heart, etc. OR does the other physical conditions, like bad heart, etc. have an adverse affect on the AD.

    Well have the answer from my dh's neuro. Had him there this morning. I asked the dr. the above question....his answer: The Ad will have an adverse affect on the other physical conditions the person has.

    Also, he increased his Risperidone from one/half of 1MG twice a day to 1MG twice a day because of the seizures he keeps having at night.
    • CommentAuthorcarosi*
    • CommentTimeJun 1st 2012
     
    AS near as I've been able to figure out, after years of Caregiving, when our LOs are in a socially stressful situation---group event, Dr. appt, etc.--- they do subconciously pull themselves as together as they can--and we see them act "normal". Not normal for them, and makes us look like liars, overprotective, etc. They are putting their best foot forward. We learn that from childhood.
    When you combine a Demented LO with a Dr. who has not, or will not let go of the professuioal need "to fix" the problem, you see their need to test, retest, etc.
    Once a Dx is made, IMHO there is no sense to redoing tests unless there is a significant event to warrant it.

    It makes little sense to me, to add to performance anxiety in our LOs, over tests that actually mean so little.
    •  
      CommentAuthorJudithKB*
    • CommentTimeJun 1st 2012
     
    I think your post is so correct about testing to try and fix the problem. The neuro my dh goes to has only asked him questions never given him a test and to see how he anwswered them and now...he doesn't even do that because the last time
    he asked him in April what month it was and my dh said Nov. and he didn't know the what day it was or what year it was and didn't know how old he was..

    We moved and have had this neuro for two years...and he accepted the notes, tests and such from his previous neuro.
    • CommentAuthoracvann
    • CommentTimeJun 2nd 2012
     
    I've already commented several times on other threads about the poor reliability of using the MMSE to diagnose AD. In fact, I've had one article published on this topic, and a second piece on this same topic will be published in a forthcoming issue of Journal of the American Geriatric Society. The MMSE was never designed to diagnose AD ... however it continues to be so frequently used primarily because it is quick to adminster and easy to score, and time-pressured doctors like such screening instruments. However, only a thorough neuropsychological exam can screen for AD ... but that takes time and skill in interpreting results, and even many neurologists and geriatric psychiatrists do not deal with enough AD patients to be able to administer such tests with accuracy. Much like you, joang, once there is confirmation of an AD diagnosis, and once we as caregivers see these symptoms daily, I see no point to continued screeing tests or evaluations on a regular basis unless some other disease is also at work. We caregivers are much more familiar with AD than most of our doctors. With respect to my wife, Clare sees her cardiologist every 3-4 months due to her serious heart condition, and our PCP annually for a physical exam. She also goes once a year for a complete neuropsych test, but that's only because she is enrolled in a longitudinal study at an Alzheimer's Disease Research Center and her participation along with other AD patients, hopefully, is helping provide a data base for doctors to better understand this horrible disease. The results we receive from this annual testing, however, has no bearing on Clare's current treatment because ... there simply IS no real treatment for AD!
    • CommentAuthorAdmin
    • CommentTimeJun 2nd 2012
     
    The mini mental should ask:

    What is your phone number?
    What is your address?
    How old are you?

    Sid cannot answer any of those questions. It would seem to me that even if you can spell WORLD backwards, if you don't know your phone number, address, and age, you have a problem.

    joang
  12.  
    Our PCP usually asks: did you eat breakfast this morning? What did you eat? Where does your son live now? Did you take the dog for walk today? How old are you now? And, DH can never answer correctly.
    • CommentAuthorAmber
    • CommentTimeJun 2nd 2012
     
    Last year on the MMSE he scored 14.
    This year on the MMSE he scored 22.

    I agree they should have a list of different questions they ask each time so our love ones can't practice before they go.
    • CommentAuthorcarosi*
    • CommentTimeJun 2nd 2012
     
    When I first observed the MMSE given DH, it was for Diagnosis and then verification of his Mental Illness. We had a Worker's Comp. case. His Dr. used one set of questions, the Dr. for the Comp. Case another, but in exactly the same structure. Those 2 tests, close together (1988), had similar results. The testing done in 2006 used the MMSE and his results had dropped significantly.

    My question has always been, How can you get ANY useable results from this test when you're giving it to a person who is muliply Learning Disabled? He can neither read nor write, nor do Math beyond simple addition and subtraction--no borrowing nor carrying. He's called the test dumb. I think it's the testers.
    • CommentAuthorElaineH
    • CommentTimeJun 2nd 2012
     
    The MMSE is the reason that my DH refused to go back to the Neurologist. The second to his last visit, as we were driving away DH said, “She keeps asking me those stupid questions & I hate that.” They were stupid because he couldn't answer them (scored 16/30). The last time he went I told the Nurse Practitioner that he hates the questions she asks ( I didn't know that it was the MMSE – heck I didn’t even know what that was!) so I suggested that maybe she could just ask him some general questions, maybe about the family or about what he's been doing. So she did ( in the record she wrote that he refused the MMSE). As we were driving away from that appointment he was upset & said that this time she was asking all kinds of personal questions that were none of her business & that he was NOT going to go back. And that ended that!
    • CommentAuthorms. magic
    • CommentTimeJun 2nd 2012
     
    DH knows his name, birth date, address, phone number - so he would do well.
    He never knows the day of the week, rarely knows the month/season. Most of the time he knows the year.

    He would definitely fall down on some of the questions Vickie's doctor asks: He never knows what he ate for breakfast!
    Today he asked me at least 5 times if the mail came.

    His neuro asks these kinds of questions, but so do the nurses who come out twice a year to check him for disability insurance and LTC insurance.
    As I mentioned before, he usually does well in most areas, although 10 minutes later he'll ask me what day it is, and what month.
    • CommentAuthorxox
    • CommentTimeJun 3rd 2012
     
    Vikki, my wife asks me those questions almost every day. Fortunately I know the answers.