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  1.  
    I was wondering about sharing some early symptoms relating to AD diagnosis, other than short-term memory loss.

    In my case one of the early symptoms were loss of voice volume. He always sang a lot including solos at Church and his voice kept losing volume until he had to stop. Had him to 2 Neuro's and PCP to check for throat things and not one of them mentioned it could be related to AD. Sometimes I think Doctors don't want to talk about Dementia. Of course, I would have been in denial.....so maybe that is why...
    • CommentAuthorAdmin
    • CommentTimeSep 30th 2008
     
    I wrote two blogs about this recently-http://www.thealzheimerspouse.com/ADdivorce.htm - and -http://www.thealzheimerspouse.com/Earlyeducationfornew.htm- personality changes so dramatic that I was thrown for a loop - irrationality and temper tantrums that I never would have associated with AD.

    joang
  2.  
    Mine was his sleeping position. He would turn around in his sleep and put his head at the foot of the bed, or sleep bent over. We had always slept spooned and side by side before this started.

    The first shocker was when a railroad crossing guard came down unexpectedly and touched the roof of the car (no train either) and scratched the hood - didn't dent it, but scratched it - and he shrugged his shoulders! Before this, if anything marked the car, he would have called the insurance company and the railroad people and tell them what happened and wait for them to make things right (pay for the repair). I couldn't believe it. Two weeks later, he got a scratch on the side mirror of the car, and I realized that his visual perception was off. Then, as Joan said, the personality changed. He became stand-offish, no longer compassionate or understanding. That was not my husband's personality at all.
  3.  
    Joang - I am having trouble bringing up the two blogs. Could you please give us the number? Thanks.
    •  
      CommentAuthorStarling*
    • CommentTimeSep 30th 2008
     
    Hearing loss. It is possible and even probable that he actually has hearing loss, but it is also likely that what we took for hearing loss was actually a dementia symptom.
    • CommentAuthorMawzy*
    • CommentTimeSep 30th 2008
     
    Besides the memory loss, it seemed as if he would want to argue about the most minute things and he didn't really make much sense. Then, things started to disappear and he would blame me. Some of this started 2-3 years before he was diagnosed with MCI 2 years ago August. A year later his MME was the same. But he was diagnosed with Mod to Sev AD in Nov--3 months later. I was simply stunned at the rapidity with which it moved. I just had such a hard time believeing the neuro was correct. When he asked me if I had our POAs and the health directives all in order, I guessed he was right. However, I did call our GP and asked him if the neuro could be wrong. He said he doubted it and felt I was in denial.
    • CommentAuthorEvalena
    • CommentTimeSep 30th 2008
     
    My husband developed a silly (annoying) laugh. Weird and kind of creepy at times.
    He was convinced that one of our neighbors disliked him (not true) and that she discouraged her husband from speaking to him. My husband told me that this neighbor asked him directly if he was mad at her. I doubted that their conversation occurred, but our neighbor verified the story recently. She knows about his AD now.
  4.  
    All the stories so far are a little different. They don't have basic symptoms, like diabetes, heart disease, etc. That makes it almost impossible to tell when it actually started. Could it have just "evolved?" It may of started years before some of us were aware of it.
    Scary, isn't it.?
    •  
      CommentAuthorStarling*
    • CommentTimeSep 30th 2008
     
    Imohr, my husband's Vascular Dementia was event driven. He had an accident with a head injury, heart stoppage, multiple resuscitations and a pacemaker operation all on the same day. BUT I'm convinced that he already had dementia before the event. Just a very early version of it, and one that was either moving very slowly, or had developed because of a 9 hour, 6 bypass operation years earlier and was stable.

    I don't think anyone recognizes stage 2 dementia when it is happening, just after the fact you look back at an odd behavior and... I doubt if most people can be diagnosed at stage 3 unless it is one of those dementias that all of the other members of the family have already developed. And most people don't get diagnosed at stage 4 either. That is the point where the doctors and the families are all in denial.
  5.  
    I bet you are right Starling. The description for stage 1-2-3-4 could fit most people with or without dementia. I know I was in denial and kept trying to fit other things in, because his parents didn't have it and they lived to the low 90's. Well they did the last couple of years of life.
    • CommentAuthordagma3
    • CommentTimeSep 30th 2008
     
    Evalena - I KNOW the laugh. My LO has been showing little signs of strange behavior for years. He is normally a very quiet, shy withdrawn person. When the "laugh" came it was inappropriate, not related to anything and sounded bizarre. Now he laughs all the time except when he is mad with me and he talks to anyone that will listen and tell them some true personal things about me and makes up things - puts several events years apart together and insists that it is true - but laughing was the first real sign. It is hard to explain - but it certainly got my attention.
    • CommentAuthordivvi*
    • CommentTimeSep 30th 2008
     
    My DH was a brillant atty but was considered lets say nicely a 'dingbat' by his staff when it came to losing things for a very long time prior to me even knowing him...i can look back now and may could just guess it started wayyyyy back he probably had the start of dementia of sorts due to strokes, and maybe never diagnosed and just ran with it. how hard it must have been to make everything work and get thru all the responsibilities he had all those yrs.
    i never once once would have guessed though all the time i was with him, itt would turn out to be AD so many years later. of course the primary diagnosis was vascular dementia from uncontrolled blood pressure for yrs too so maybe that led to more mini strokes along the way and now a combo of VAD/AD. its anybodys guess how/when things begin to progress. divvi
    • CommentAuthorSharan*
    • CommentTimeSep 30th 2008
     
    I am still trying to figure out what "symptoms" my husband has had of dementia - looking back. He started with a neck jerk, but thinking about it, he actually started to wtihdraw before he started jerking. It's hard to pinpoint. His personality change is withdrawal...flatness. My husband was very warm and caring, engaged with everyone he met. Now, he still tells everyone he is doing well - he sort of pumps himself up and then its like a balloon someone forgot to tie. He has had odd little habits come up like pointing to his mouth and leaving his finger touching his lips. He has muscle weakness; he trembles. His diagnosis is still so new, but he has severe memory impairment and severe executive dysfunction with overall moderately severe cognitive impairment. A lot of words that still mean little to me.
  6.  
    Hi Sharan - Glad to have you on board. Welcome to the confused spouses thread. I am with you, so many little things. My husband has had the "flattness" for several years. Sometimes that is a symptom of "Parkensonism" which my DH has along with the AD and VD. Parkensonism means he has some of the symptoms of Parkenson but not full blown. The "flat look" I call facial masking. Did your Neuro mention that?

    Glad to see you posting and there will be someone else along soon.
    • CommentAuthordivvi*
    • CommentTimeSep 30th 2008
     
    Hi Sharan, are you new?? if you are, welcome! what kind of neck jerking are you relating to if i can ask? there are several of us here whose spouses suffer myclonic jerks ( like spasms drs say from brain spasming)..is yours different you think? my DH didnt start the jerking until well in to stage 6. at any rate, there ar many symptoms they may have very early on that we dont pick up on til we actually see something amiss. glad you are on board -divvi
    • CommentAuthorThenneck *
    • CommentTimeSep 30th 2008
     
    About 12 years ago my wife developed very bad breath, seemingly lost her sense of smell and started snoring terribly. Her dental hygiene has always been immaculate and I always wondered why she even bothered going to the dentist. She started sleeping much harder. She started displaying very irrational behavior, mostly toward me. She started misplacing EVERYTHING. Lastly, it appeared she had a hearing problem. With that causing many arguments, she went and got her ears checked. Perfect hearing.
    (I know now it was that she simply was never listening......like now). Disagreements and arguments multiplied matched by more irrational behavior.
    The only reason I am comfortable bringing up the points mentioned in the 1st sentence is this. From 2003 to 2005 I quit trying to consider I might be the problem and tried everything I could think of to figure out what was wrong with my wife and to get her in for help. In August of 2005 an ad was in our local papar stating a professor from the U. of Illinois was in our area to give a presentation on Alzheimers disease to the general public followed by a session the following day just for local Dr.'s. I went. What an eye opener.
    The guy was simply awesome. He was very up front, very thorough in describing the disease as well as symptoms and challenges for those "living with" the disease. I honestly felt the guy had a dad gum video camera in our house the last 5 years. The last thing he covered was progress being made in research and diagnosis. He mentioned that there is evidence that the sense of smell is thought to be linked to ALZ. I've come to believe that, making my own small minded connection to impacts on the sinuses. (YOur thinking, what's with this guy?) Well, I'm certain.
    Throughout the presentation, there was an older fella sitting directly behind me (accompanied by his spouse) that kept raising his hand and asking the same exact question. The lecturer answered patiently every single time. In closing, he said that for caregivers, your very best coping mechanism is to keep a sense of humor. Oh, how I try.
    Based on the difficulties we had getting any Dr. in our area to listen to us and pay attention to my wife's functioning level, I'm going to go out on a limb and guess that none of our local Dr.s attended the session the next day. Thenneck.
    • CommentAuthorSharan*
    • CommentTimeSep 30th 2008
     
    Yes, I am new. Its very helpful seeing all these different symptoms. It makes me start thinking about things that happened. Of course, that is in the past. We have had the same neurologist since January 2006. The jerking that my husband has is hard to describe, but I will give it a whirl. Imagine a person saying no irraticaly and not in a constant motion with the neck jerking back hard sometimes and other times just kind of hovering on one side like its stuck and then it gets unstuck and it jerks to the other side. Sometimes his jerking is so strong that its what I call a "whole body jerk" - it jerks so hard that his legs go out and his head goes back. They have tested Mike for Parkinsons, Huningtons, Wilson's and so many other diseases, but all of the tests came back normal. We eventually went to a movement disorder specialist in Houston who said that my husband had "Stress Induced Psychogenic Tic Disorder." Some name, hunh? Any way, of course, there is nothing that can be done. My husband also has tremors. In addition, he has Restless Leg Syndrome (that's what they're calling the leg movements and inability to stay seated - the restlessness that makes Mike get up and go stand by the fireplace and just stare...at a spot on the fireplace...when there's no fire), Central Sleep Apnea, Major Depression & General Anxiety Disorder (no surprise there!), hallucinations (he hears people calling his name in the night and the voices sometimes wake him up; but he's on 900 MG of Seroquel XR and the voices seem to be gone = mostly), and COPD (of the emphasema variety).

    All of this in just the last 3 years. =) Yes...a little over 3 years ago, my husband was a fully functioning Commercial HVAC engineer working for a company specializing in Commercial HVAC for major businesses in the area. Now, he can't count backward from 100 by 7 or even forward by 12s (even though he has been in various forms of construction/engineering since he was 16 and used measurements daily!).

    We had a neuropsychologist evaluate my husband. He says that my husband has severe memory loss and severe executive dysfunction, and that his overall cognitive impairment should be considered moderately severe. Putting that together with the AD scale and my novice review of the symptoms in Stage 5, my husband seems to be squarely in Stage 5 and going toward 6. Any ideas on how long that should take? It seems like my husband is on the fast track from what I have read. Any advise, including especially straight talk,would be greatly appreciated.

    May God hold you in the palm of His hand and keep you in the light of His love.
  7.  
    Oh my, Sharan, you do have a lot on your plate. There are others here who have dealt with some of the same things you're going through and they will be along shortly to help. As we usually say...we're glad you've found this web site but sorry for the reason you're here. We're all going through so much and this is a place where everybody understands what you're going through.
    • CommentAuthordivvi*
    • CommentTimeOct 1st 2008
     
    Sharan thank you for sharing about the jerking. i think all of our issues with any of the jerking is related of course to the brain and short circuiting neuron transmissions. the wholes in the brain leave blanks for everything else to work around. you didnt say how old your DH is, if you want to say. many here have early onset spouses that seem to progress much more rapidly. i am not such a sceptic with the stress induced issues anymore, i have seen DH have one of these myclonic jerks he suffers when under stress. then it subsides when hes back feeling safe and calmer. all we can hope for is that we can keep them as stressless as possible then- i hope that means keeping myself that way as well along the way. sorry you are in the throws dealing with these awful issues, but glad you found the right place for info and friendship. divvi
    • CommentAuthorAdmin
    • CommentTimeOct 1st 2008 edited
     
    Sharan,

    Welcome to my website. You do have a LOT going on. You will find much information and support here. I will start by asking you to log onto the home page of this website - www.thealzheimerspouse.com - there is a wealth of information there - look on the left side, and scroll down to the woman in the life jacket that says "Help", and click on
    "Understanding the Dementia Experience." Extremely informative. Also on the left side, click on "Help for the Newly Diagnosed and New to this Website." I understand your DH is not newly diagnosed, but being new to the website, you may find resources in there that you did not know about.

    Go to the top of this page, and click "search". Do a search for Parkinson's, restless leg syndrome, and myclonic jerks. There are quite a few posts on those topics.

    And finally, as for how long it takes to go from one stage to another - the straight talk is that every Alzheimer patient is different. They tend to have symptoms of more than one stage at any given time, and some can stay in one stage for years before advancing, while others move very quickly. You did not mention your husband's age. There is a type of EOAD (Early Onset Alzheimer's Disease) in which the patient is very young - 40's or early 50's- this type is rare, but progresses very rapidly. We have a member whose wife was diagnosed at age 39 or 40, and died at 43.

    On the other hand, the disease can last for 10-20 years. I know this doesn't sound like "straight talk", but that is the nature of the disease - it is a roller coaster and unpredictable.

    I am sure many of our members will be along to give you more information. Please check in often.

    joang
  8.  
    theneck, thank you for your description. Your wife seems to have had AD longer than a lot of others here. I would not have put some of those symptoms together with AD, but once you read about it, it makes sense.

    My husband would say he didn't hear me, and my daughter complained I wasn't hearing her, so we both had our hearing tested. The first thing the doctor discovered was a huge ball of ear wax in my husband's ear! Now, every year, his primary care physician cleans them out. He won't let me touch them! However, his hearing was fine. Now I know he just can't tune me in - he is SO focused on what he is doing that his concentration is 100%.

    Sharon, welcome! You have already been through so much! my husband also has COPD, Restless Leg Syndrome, PVD, some hand shaking, sleep apnea, and is at the end of stage 6. He can feed himself if you put the food in front of him (especially if it is in pieces rather than requiring him to cut it up), dress himself (though it takes quite a while and I check that the zipper is up), and can make the bed (though not as well as 6 months ago - and it takes 20 minutes). He has lost the abilities to take out the trash, unload or load the dishwasher, etc. over the last year. He also has aphysia - and can only communicate with about 5 words. He is also weak, though he is taken for a walk around the block once or twice every day. I don't know if he will be here in a couple of years. His has been a rapid decline. He was diagnosed in February 2007, but he had it for a year before I was able to get the diagnosis.

    As has been stated here before - if you have seen one case of AD, you have seen one case of AD. Each one is different, and though some of our spouses (spice) do the same things, they are in different stages, and some will live a lot longer than others. A lot will depend on whether they have strokes or heart attacks or develop pneumonia, because those will shorten their life spans as well.

    We just meet here at Joan's place and discuss what is happening to each of us, learn from each other, lean on each other, laugh together, and most importantly - we are there for each other with sympathy and hugs and love.
    • CommentAuthorSharan*
    • CommentTimeOct 1st 2008
     
    Thank you all for your frankness and for your support. My husband is 51. He just turned 51. I would be very interested in knowing more about the type of EOAD that progresses rapidly, mainly because I suspect that is what my husband has the rare type. This is particularly true given the fact that his neurologist told me that, if we don't/can't stop the progress, Mike has 2 years (not 6 or 9 months). He is on Exelon patch (the first month's version), but he still seems to be getting worse.

    As for the jerking, they are myclonic jerks and do increase with stress. I find it fascinating that the Alzheimers literature I have seen does not mention the myclonic jerks. I just might send the "movement disorder specialist" a letter advising him of this fact. This is something he should certainly be aware of. =)

    I am so glad I found you all!
    •  
      CommentAuthorStarling*
    • CommentTimeOct 1st 2008
     
    We have discussed myclonic jerks here. My husband does not have them, but serveral of the LOs do. I have no idea how to find that discussion for you. We tend to dump a lot of different things into the threads about symptoms. This one is pretty typical.

    The important thing for you to know about those jerks is that your husband is not alone. There is a lot of stuff that the literature doesn't talk about that turns out to be amazingly common.
    • CommentAuthorLizbeth
    • CommentTimeOct 1st 2008
     
    Sharan,
    Here is some info for you. http://www.ninds.nih.gov/disorders/myoclonus/detail_myoclonus.htm My H does have occasional jerks. Actually he had these early in the disease even before he realized he had AD. They diminished once he started Razadyne and Namenda.

    My H has Familial EOAD. A neuropsychiatrist we have seen a couple of times (He is a noted AD researcher and has been studying a number of these EOAD families with identified genetic mutations.) said it depends on what part of the brain is affected. Some AD persons have parkensonian type symptoms but there may be no value in putting them on medication for those symptoms.

    The EOAD families studied have variations in the symptoms. For example, seizures could be a symptom in one family line but it would not be common in another genetic mutation. Some people have symptoms associated with the later stages early in the disease. However, all AD patients have the hallmark loss of memory early in the disease.

    I don't think all EOAD progresses really fast. In my H family, currently the duration from stage 3 symptoms to death is around 5-10 years.
  9.  
    As I have been reading these comments on early symptoms of AD, I have tried to remember what might have been the case with my wife. I can't think of anything prior to the time our daughter told me that she was "worried about Mom's memory". Since then I have noticed that she became more affectionate. She is still somewhat that way, and still constantly worries about me. Beyond that I have taken over all household duties. Her walking is unsteady and sometimes her "conversation" makes no sense to me. She is still eating well. As has been pointed out frequently, AD patients have many different ways of expressing it. This may be related to the areas of the brain affected.
    • CommentAuthorKadee*
    • CommentTimeOct 1st 2008
     
    Welcome Sharan, I am sorry you need this type of forum, however, I am glad you found us. You will find everyone here very helpful, caring & non-judgemental.
    My husband is 57 years old, he suffers from Frontal Temporal Dementia. He also has myoclonic jerks, his Neurologist recently prescribed Keppra which seems to be helping. He still has some jerking, however, not as often & not as violent.
    Again, Welcome
    •  
      CommentAuthorStarling*
    • CommentTimeOct 2nd 2008
     
    I've been thinking about this whole subject. I am one of those people who think that their LO might have been having problems with dementia much earlier than the diagnosis.

    I suggest that the following can be early signs that something is wrong:

    * The rational button breaks early.

    * Learning new things becomes very difficult.

    * They get stuck in ONE way of doing things, and that one way might not make a whole lot of sense, but you go along with it. They won't even consider another way even when you know the other way is easier or better. They are totally rigid.

    * Their way is right. Everyone else's way is wrong. They know your job better than you do even though you've been doing it for years and they have never done it. They know everyone's job better than the person who actually does the job.

    Basically they become compulsively attached to one and only one way. Sometimes when it involves the household, and it is a husband we are discussing, we think it is just male arrogance, but it really isn't that at all.
  10.  
    Starling, I think you could be right because things creep up slowly and you adjust your thinking that it is the norm.

    My problem is how do you distinguish the difference between Early Stages AD and a individual who is just his ordinary "I know everything"
    type of person. My H fits in with your signs from years ago, gradually getting worse. I don't know if this makes any sense or not.

    But, at the present there is no cure, so do we test everybody early?
    •  
      CommentAuthorNikki
    • CommentTimeOct 2nd 2008
     
    Welcome Sharan! I am glad you found your way here.
    I may have missed it, but I didn't see if your husbands family has a history of
    Alzheimer's? I too am sorry you are experiencing so much with your husband.
    Keeping you in Mike in my thoughts and prayers.

    As for testing, no I don't think it would be feasible to test everyone.
    I am only 41, yet I forget where I placed the keys! But, I DO think a
    personality change is worthy of investigation. Lynn had a bad car accident,
    though there was no damage, we did see a change. I wish now -I had pushed
    for more testing. I just assumed it was part from the accident, and partly his age.
    *sigh
    • CommentAuthorSharan*
    • CommentTimeOct 2nd 2008
     
    To my knowledge, there's no family history of AD. However, my H's father had indifferentiated schitzophrenia with manic - depressive tendencies. His memory was fine, though, and he was lucid until his death from a heart condition just before he turned 65. It is important to note, however, that my H's father was the 12th of 12 (his mother thought she was going through the "change" when she discovered she was pregnant) and my H wasn't born until his father was 37. So, my H's uncles and aunts went the prime of their life around the turn of the century and some died in WWI, WWII, etc. So, who the heck knows. We do have 3 children (all grown and married) so I want to know for their sake.

    How do you get the genetic testing?
    •  
      CommentAuthorStarling*
    • CommentTimeOct 2nd 2008
     
    Nikki, I'm beginning to think that everyone over the age of 30 should take an extended mini-mental as a baseline test. It doesn't require a neurologist to give the test. If you are using it for mass screenings you could train an experienced medical assistant at the family practice to give the test and to know when to scream for a doctor.
    •  
      CommentAuthorStarling*
    • CommentTimeOct 2nd 2008
     
    Sharon, if your husband is over 65 there is no reason for genetic testing. Dementia in people over 65 is not genetic as far as we currently know.
    • CommentAuthorSunshyne
    • CommentTimeOct 2nd 2008 edited
     
    One of the very first symptoms my husband showed -- now that I understand what was going on -- was coming up too fast on the car in front of him when driving. He used to be a terrific driver, did some stock car racing as a youngster, really understood how to "read" traffic and could tell what other drivers were going to do well before they did it.

    Then that changed. I practically punched a hole in the floor on the passenger side, trying to brake the car before we hit. He always seemed so very startled to get so close to the other car, claimed they'd suddenly braked. (Without the brake lights going on, mind you.)

    So it turns out this is probably due to "visual agnosia". In visual agnosia, the eyes function normally, but the brain does not interpret the signals correctly. The patient sees an object but can't identify it. Or he can't tell where it is in space -- he thinks it's closer or farther away than it is, or to one side. There are all sorts of other manifestations that are possible -- tunnel vision, for example. That can cause the patient to walk behind, rather than beside, the spouse. (My husband has done that for a long time, too.)

    Anyway, sometimes visual agnosia is the first symptom. This is called "visual variant AD." And I now believe that's what my husband has.

    Mary, there is also "auditory agnosia", in which the ears function normally but the patient has trouble recognizing sounds. There are several subtypes -- auditory/verbal information agnosia is the inability to hear words. That may have been contributing to your husband's problems.

    Sharan, if your husband had the rare type of AD that tends to progress more quickly, either his mother or his father would HAD to have had early-onset AD as well. So if there is no family history of AD, then your husband has "sporadic" AD, which usually develops later in life, but can start in much younger people. It is not inherited. There are some genetic mutations that are "risk factors" for AD that are inherited, but you can develop AD without having those genes, and you can have those genes and never develop AD. Other factors, probably environmental, determine whether sporadic AD is developed.

    Myoclonus and other types of seizures tend to develop in the later stages, which is probably why you usually don't see much about them. But they can develop at any stage.
    • CommentAuthoriggy
    • CommentTimeOct 3rd 2008
     
    1. The laugh. I remember exactly where I was the first time I heard it. I remember thinking, "Where the hell did that come from?"
    2. Personality change. She became paranoid - was convinced that her friends no longer liked her.
    3. Spatial perception problems. She thought I was always too close to the shoulder when I was driving. Her driving skills deteriorated rapidly - running red lights, tailgating.
    4. Complaints about poor hearing and poor vision. Neither confirmed on testing.
    • CommentAuthorSharan*
    • CommentTimeOct 3rd 2008
     
    My husband started walking across my path when we were walking in the mall or on the sidewalk. He would just walk right into me. He still walks into my path, but I now know he's coming. So, he walks from one side to the other. Most often, he walks from my right to my left, but he has gone from left to right. He, too, went through a time when he seemed to be having hearing problems, but none were found on testing. That was so long ago, though, it might not be related at all.
    • CommentAuthorbriegull*
    • CommentTimeOct 3rd 2008
     
    No, Sharan, I think that hearing loss that stops later on is very common. For YEARS he couldn't hear a thing I said if I were in another room. COuldn't understand one voice speaking when another was, etc. Now I think he was confused by what was being said and still trying to make it out. Now he just mostly doesn't understand! And doesn't care that he doesn't.
    • CommentAuthorkelly5000
    • CommentTimeOct 3rd 2008
     
    The jerking was I believe, an early symptom for DH. Pretty much from the time we started living together, he would have what he called "jimmies". He attributed it to Restless Leg Syndrome, but it involved his upper body, especially his head, too. And over time, it got worse. He would have to leave the room at times so I could sleep. At the time, I remember worrying that it was a sign of some neurological problem, especially since his brother has some form of muscular dystrophy. But he would brush it off. "Oh, I've told the Dr. about it; it's normal." Looking back now, I think it was early sign of AD. What amazes me is that by the time he was diagnosed with AD, it stopped. It rarely happens now. It's like his brain was "spasming" and when he got to a certain stage, it stopped.

    He would also be very rigid and fixed in his opinion about some things. My family would even comment on how "rigid" he seemed in his beliefs about some things, like insisting that the house is his, I should get out, when we would argue. (He owned our first house before we met, used money from that house to buy our current one), even though I'm his wife, I've worked to contribute to supporting us almost the entire time we've been married. He would argue that he contributed so much more, so I should get out. I was furious at the time, but now I attribute much of it to early AD rigidness and irrationality.

    One of the things that I find hard to cope with is how much time we wasted going round an round, arguing about stupid things, me thinking I could change his mind, when I realize there's no way I could. If only I'd known. But I guess a lot of us feel that way.

    Kelly
    • CommentAuthorKitty
    • CommentTimeOct 3rd 2008
     
    Yes, Kelly, a lot of us feel that way. I've worked the entire time (10 years) we've been married, but the house is "his." I know what you've been through, I've been there. He hasn't worked until this year, and I don't think he could get a "real job" if his life depended upon it. He has said he should divorce me, I'm thinking, o.k. relieve me. I understand the dementia is causing the remarks, but it is hard to stomach.

    Tonight he is blaring music like a teenager, we actually had a physical struggle to turn it down. He said you don't give a sh*t about me or anybody. Huh? It's still blaring.
    •  
      CommentAuthorStarling*
    • CommentTimeOct 4th 2008 edited
     
    I want to comment on something way up in this thread.

    Nikki, forgetting where you put the keys once in a while is normal. Forgetting what a key is is dementia.

    But really, forgetting where you put the keys once in a while really is normal. We will all do it once in a while. The real question is one of the first ones on the mini-mental test. What day (of the week) is today? What month is it? What is the year? What season is it?

    Do you know your address? Do you know your phone number?

    Those are the questions on the mini-mental and when my husband was diagnosed, at about stage 4, he couldn't answer those questions.

    One of the reasons I went and had a good look at both versions of the mini-mental was to actually try them out on myself. I said I couldn't count backwards from 100 by 7s, but with all of my learning disabilities I can do that. I have to work it out, but what is being tested is the ability to work it out. And, although I still have to work it out, the alternate question about spelling WORLD backwards is something I always realized I could do. I just have to THINK about it.

    The day of the week question and the address question seems to be testing the ability to remember something quickly that ought to be almost automatic. The WORLD and counting questions seem to be about being able to think something through. I'm not sure what the other questions are checking out.
  11.  
    I never knew when over 65 - dementia is not genetic!
    Now, I am wondering about husband, as his mother was over 65 and his brother was over 65.
    Now, I remember his mother was never diagnosed , as this was years ago.
    Children should be glad to hear this - I am sure they worry about this subject. I have also heard that only 5% are genetic.?? Who knows!!!
    • CommentAuthorSunshyne
    • CommentTimeOct 4th 2008
     
    asa, I've seen estimates that 5% of all AD cases are the inherited early-onset familial AD (eFAD) type, and I've also seen estimates as low as 0.001%. I think it's safe to say it's pretty rare.
    • CommentAuthorbriegull*
    • CommentTimeOct 4th 2008
     
    Starling, when you're retired, you frequently have to work out what the day of the week is - let's see, I went to church yesterday.. I watched Earl last night, whatever. And day of the MONTH, oh dear, I couldn't tell you that one day in ten unless *I* was the one responsible for keeping track of when the doctor's appointment is. At banks, where people are writing checks, the date is always prominently displayed, after all.

    Likewise, if you take someone who's confused to a new neuro's office in some building in some hospital park you've never been in before, and then ask them where they are, they're BOUND to get it wrong.

    Now when we get down to not knowing what season it is, or what year it is, I agree... But it's like the snow shovels we Texas kids were supposed to identify in the Otis IQ tests. We'd never seen one in our lives! I bet there are lots of people on this board here that don't know what oil trucks are (not the ones that take gasoline to the nearest station). Situational intelligence, you might consider it.
    •  
      CommentAuthorStarling*
    • CommentTimeOct 5th 2008
     
    Notice I didn't mention the date. Yes, I do have problems with that and I think a lot of people do. But I bet you know what part of the month you are in. Early in the month? Mid month? Later in the month? And I bet if you had a calendar, you would know where to look to figure out which date it was. My husband hasn't been able to do that even though I've been crossing off dates for more than a year.

    Years and years ago I found myself losing the day of the week, and I was still working. I started each day telling myself, Today is Monday, Today is Monday (actually Today is Sunday night <grin>).

    The question is NOT "where are you?" The question is "What KIND of building are you in?" The answer if you are in a doctor's office can be "office building" or "doctor's office" or even "brick building". Any of those would be right. And if you've taken them to a new doctor, and they don't have dementia, they would come up with one of those answers.

    I've seen versions of the test where there is a question about "who the sovereign is?" Obviously not an American test, but I bet an Australian would be expected to be able to answer that one. So you are right about situational questions. But except for the Presidential or Sovereign alternate questions (and they are alternates not primary questions and aren't on all versions of the test) I'm not aware of any situational questions on the tests.

    Here is a copy of the extended mini-mental (50 points I believe)
    http://m2.aol.com/__121b_iyRBLkPwVLvpjqPrZ3vioABOdlaYDfVz

    and another one
    http://www.guyundrill.com/MRCPsych/MRCPsych/files/Extended%20mmse.pdf

    And the basic 30 point test
    http://www.chcr.brown.edu/MMSE.PDF

    Try them out for yourself. Try out the counting back by 7s which I originally objected to until I actually tried it and discovered I could do it if I thought it through.
    • CommentAuthorSunshyne
    • CommentTimeOct 6th 2008
     
    People who do not speak English as their native language can have trouble with a number of the questions, such as repeating "no ifs, ands, or buts". There have been a number of studies to develop alternate phrases that will accomplish the same thing for people who grew up speaking various foreign languages.
    •  
      CommentAuthorStarling*
    • CommentTimeOct 6th 2008
     
    They tried the "no ifs, ands, or buts" for the first and only time on my husband this last time around. My husband was born in Hungary, which means that not only is English not his native language, but he didn't regularly speak an Indo-European language until he was 20 years old. He did have Russian and German in school, but didn't speak either on a daily basis.

    And the doctor immediately went to another alternate question for people who are not native speakers of English. I'm not sure if he could have done the no ifs, ands, or buts 20 years ago. And you have to go back 20 years to be sure that there was no dementia going on because my husband had a 9 hour, 6 bypass operation in January 1992. I believe there was some loss of mental function after that operation, although so mild that it would not have been possible to diagnose it.
    • CommentAuthorAdmin
    • CommentTimeOct 27th 2008
     
    ttt