DH has EEG on Wednesday and PET/CT on Friday. His MRI showed normal aging for his age. My question,,,,,I know you are spouses and not doctors, but....IF the EEG and PET/CT scans come back normal, what then? He says that if they are normal he will continue his part time job as a school bus driver.............scares the peewaddlin out of me. 2 doctors have already told him to quit driving a bus. Anyway, can a person have dementia (they are looking at FTD) and it not show up in the scans? His neuro-psyche testing suggested "The test results did indicate some significant deficits. These include his visual-spatial abilities, category naming, frontal lobe/executive functioning abilities, attention/concentration, mental processing speed, and ability to identify and label odors." The executive function/frontal lobe was in the 4 percentile. I know there is something wrong, as do our friends and children....he admitted as much a week ago (but now doesn't recall that particular part of the conversation). Thanks Sheila
Actually, for an Alzheimer's diagnosis, normal is EXACTLY what you will find in all these scans! Here's why:
Dementia is a symptom, not a disease or condition. Dementia is caused by about 15 major causes, such as Parkinson's, strokes, tumors, age, so on and so forth. When you have dementia and it seems out of place, they start to look for a cause. This is done in a certain order. MRIs always come before PET scans, because MRIs rule out a certain number of causes (and are less expensive!). Then they go to EEG, and PET scan. Each time, they are looking for one more 'cause' to cross off the list.
When they get to the bottom of the list, and there is no other condition to rule out, then they diagnose Alzheimer's. Because AD is only truly diagnosed with an autopsy (there's a couple other discussions that talk about new research in this area), the doctors must jump through all the hoops trying to find all the other reasons. That is why you are having so many tests, and why they are done in that particular order. And why it is so hard to get a Dx sometimes for AD. They have to be so careful that they don't get it wrong, and the dementia could have been treated a different way and with different medications.
Sheila, My husband has had 5 MRI, A PET Scan, Lumbar Puncture, 4 EEG & numerous blood test. Nothing really shows to be consistent with Alzheimer's, however, each year his dementia is worse. His test all read normal aging for his age. However, he no longer remembers his birthdate, SS#, address, phone number, he cannot write his name, or drive a car. He is 57 years old. His problems started about 8 years ago with episodes that have been diagnosed as seizures. His memory started failing 5 years ago. So in his case yes, he has dementia, even though the test haven't confirmed it. In my opinion ( and that is all it is) he should not be driving a bus with kids. Doesn't the school district require physicals every year? My husband was lost for 1 1 1/2 hrs. 5 miles from our home last year. Stop for directions, however, they made no sense. By the grace of God, somehow he found his way home. Kadee
Sheila, I think you need to be in touch with the bus company and get them to require a new physical and explain your concerns. The last thing they need is to be sued for people's kids who get hurt in an accident. If you're honest with them (and of course do this without his knowledge) they'll find a way to remove him.
Kaydee, That is amazing. How is it that this stuff doesn't show up on tests?
Sheila, Seems that significant deficits would be enough, as well as getting the doctors to give written documentation to uphold their statements. Best of luck to you.
Sheila, please don't think I am being rude, but where do you live? I sure don't want my grandson being driven to school by an impaired driver....You have an obligation to make sure your husband is not transporting innocent children.
Actually, I believe that in general, a case of Alzheimer's which has progressed beyond the very earliest stages WILL show up on a PET Scan.* The reason for this is that the PET measures glucose metabolism in the brain. Glucose, being the simplest form of fuel for the body, is used by any parts that are thriving and doing the jobs they're meant to do. As AD progresses, and parts of the brain stop working so well, this will show up--usually in a very characteristic pattern--as a reduction in glucose metabolism by certain lobes.
If you get a copy of the PET scan, what this looks like (in the color version...sometimes MDs prefer the black & white images) is lights dimming. In other words, you see images of the brain. An all-lit-up functioning brain may be all bright blue and green. (Or yellow/red--depends on color schemes chosen.) With AD, the less-functional parts will look, literally, as if the lights are going out. Or have gone out. It is strikingly obvious if you compare these pictures to images of healthy brains.
In fact, when we received copies of my husband's PET scan from the imaging center, I looked up "normal" and "alzheimer" PET scans online and had pretty much reached the right conclusion myself even before the neurologist confirmed what I was seeing.
It is true that an MRI will not show much until very late stages where there may have been considerable shrinkage. This is because an MRI is showing you brain anatomy or structure, and the PET is giving you a lights on-or-off picture of which parts are humming and which are not.
*I guess I should add, based on kadee's comments above, that your mileage may vary--but I think what I say about PET scans is true as a general rule.
They do all the tests because in addition to the range of real dementias, there is a range of not so real ones. They are trying to make sure they aren't dealing with a "fake" dementia that can actually be cured before they diagnose a real one. One of the diseases they eliminate is low thyroid disease which is very controllable. When I was being under-medicated I was in a fog a lot complete with word finding problems.
Basically most people who have dementia have Alzheimer's, but there is no test for that. It is what is left after they have eliminated everything else. I've read that about half of the people who have Vascular Dementia turn out to have had Alzheimer's as well.
There are a couple of dementias where the patient react very badly to the basic Alzheimer's/Vascular Dementia medications. Before they medicate they need to make sure that the patient doesn't have one of those dementias.
sheli1951, regardless of what the tests show, you should go to the school and get your husband off the payroll there as bus driver. No matter what the cause he should not be driving a school bus.
I agree, the test results show significant impairment. his ablity to drive is most definately impaired from the testing results so you have the obligation to the school and parents to divulge that info. they may be able to find him another partime job there at the school that doesnt involve that risk. plus i am SURE whoever covers his driving insur whether it be the school or personal they should be told as well and they will probably want to cancel the insurance due to high liability factors at this point. dont take any chances here he needs to be off the roads as many other topics on driving are here to read. divvi
Monday's Alzheimer's research will be different from Friday's research, which will change again by Monday!
There is a new one out now that I just saw on FOX news or CNN that says "Exersize may delay Alzheimer's!!" Oh boy, give us all false hope again, thanks so much. Then tell that to my AD LO who Jazzersized all her life. And then when you read the article, it admits that they may have used too few patients for an actual sample. Not only that, they're not exactly sure why the results came out that way.
Can we say 'journalistic integrity' and 'real science'? Or have we forgotten those meanings?
MRI will show the degree to which the brain is shrinking, and many people with AD show an unusual degree of shrinkage. (My husband's MRI does.) That, by itself, is not diagnostic for AD itself.
Typically, if the MRI and other diagnostic tests are consistent with AD, the doctor will order a PET scan, which shows areas of the brain that are unable to metabolize glucose properly. If the PET scan results are also consistent with AD, then the doctor will typically diagnose the patient as having "probable AD."
DH had his EEG this afternoon. As we started thru the door to register, he pulled me aside and informed me in a voice just loud enough for the office people to hear " Do not lead me around like I am a 5 year old. I am quite capable of doing this by myself". Then he proceeded to walk right past the ladies who asked to help him. When he got to the end of the area he turned around and realized where he was supposed to go. He motioned me to sit down. I sat and pretty much haven't said anything to him since. He did tell me he was sorry but at that point I didn't care if he walked into the next building....I would have let him.
PET/CT scan on Friday. ps...his MRI was a couple of months ago and it resulted in "normal for a 57 year old male". Thanks for listening. Sheila
I swear if we had a crystal ball for the AD spouse to take a good look in to the future (when they are condescending like this), they would be kissing our shoes knowing whats in the future as far as caregiving and how dependant they will become. its sure not easy knowing whats ahead for US and then having to take their c***:) hang in their- like many of us have seen in the first DX alot of us had a non-AD diagnosis. then a couple yrs later as things still progress new tests prove otherwise. divvi
Sheila, sometimes the only way to deal with something like that is to make it very clear your husband upset you. Sometimes that helps correct "bad" behavior when nothing else will.
The real problem then is that you'll still be upset about it long after he has totally forgotten.
Having said that ... it just dawned on me that that was one of my husband's earliest symptoms, if I'd only realized there was something wrong with him. I couldn't figure out why he wasn't still upset over something I found so hurtful. Well, I guess now I know.
Once, my DW wouldn't get in the car, no way, no how. We were in the Wal-Mart parking lot, and it was the better part of an hour trying to get her to get in the dang seat. I pleaded, I was mad, I insisted, I asked nicely, I tried to reason, I ordered. Nothing. I was so at the end of my rope, I tried again, and my voice kind of faltered because I wanted to cry. I saw a very small expression cross her face, as if she didn't know what to make of that. Inspired, I went ahead and let myself cry. She looked totally confused, and while she was thinking over what to do, I got her into the car.
I used that a couple more times successfully...faking crying. Whatever works, use it until its power is gone! yhc
My husband and I have rarely fought over our 25 years of marriage. If he got mad at me he basically wouldn't speak to me for a day sometime two and it was over. I learned how to deal with it and it was fine. And this was a rare occurence. A couple of years ago I noticed that when he got mad, he only stayed that way for an hour or less then things were fine again. That is when I REALLY began to suspect there was something going on with him. I DID tell him this afternoon that he upset me earlier today. He started making excuses (basically couldn't understand WHY I was hurt) and I got mad again. I grabbed my purse and told him I had to go to the grocery store. I drove around for 15-20 minutes, cooled off, and came back home. He asked me if I was ok. I told him that I was hurt but that I would get over it and that was that. It is already forgotten for him. I am sure I'll stew on it for awhile longer! :) One of my Mama's favorite sayings was "I don't chew my cabbage twice" which means we won't talk about it again. Faking crying....that works for me sometimes too!!!!! Sheila
I've got to put my 2 cents in, mostly because I'm confused. My DH was diagnoised with EOAD last October, he was 53 at the time. He never had a EEG, PET/CT, the only test done by a machine that I am aware of is an MRI. I just took out the letter I received from our Doctor(s), a team at a Medical University did all the in depth testing. This is what it said about the MRI and I quote: The MRI from 8/2/07 was interpreted as showing mild atrophy (brain shrinkage) especially in the hippocampus, the memory organ of the brain. There is no evidence of strokes, tumors, or other structural problems. When emily states that a MRI will not show shrinkage until the very late stages, I wonder. Now I have just realized there are 7 stages to Alzheimers, but with EOAD the medical professionals we deal with said with EOAD there are 3 stages mild, moderate and severe. My DH is considered severe. Would this make a difference over all?
The overriding thing to remember is how different each AD case can be, and how little is known about the disease at all. The theories they come up with today will be disproved tomorrow, and held up as fact again the next day. The best you can do is make generalizations and see if they apply to your situation.
This is why Joan's work is so important...education of people to get them to realize the AD picture rarely includes a little white haired lady smiling and sitting quietly in a chair, along with a tidy diagnosis and timeline.
My husband's neuro-psyche testing related that his memory was GOOD. Both long and short term. HELLO!!!!! Also, all the results pointed AWAY from AD....more to FTD. Who knows? Seems like there are so many different types of dementia.
Catherine, Thank you so much. That is a great article. Much better than most I have read. Most everything you read is about AD because it is the most prevelant. Thanks again.
Rae Ann: My Dh's MRI showed the same thing as your husband for his EOAD (he is 61). The mild, moderate, severe is the same thing I was told. I was told my husband was moderate to severe with long term, short term and sight memory loss. I think on the 7 stage scale my husband would be going in and out of #5 to #6 with very little of #7. He also had other tests to eliminate other possibilities like vascular dementia. The neuro said he was a classic case of EOAD.
Rae Ann and Judith, my late husband's MRI report read the same as yours back in 1997 when he was 51. He remained "kind of" functional for about three years but then he went downhill quickly. He became immobile in late 1993 and died in March of this year. So, his EOAD didn't move too swiftly. He was classic Alzheimer's.....I can look at the 7 Stages and Sub-Stages and he followed every one of them.
Rae Ann, The ALZ.org site uses 7 stages. My DH's doctor only talks in terms of 3 (mild, moderate, severe) because she thought that the 7 stages was too inaccurate as a person in mostly stage 4 or 5 could also have stage 6 symptoms or a person in stage 6 could be in stage 4 on some symptoms. There is a book out (sorry, I don't remember the name, maybe someone here has read it too) that also subdivides the 7 stages into a,b,c,d,e.
Rae Ann, an MRI may show shrinkage at earlier stages. My husband's showed more shrinkage than would be normal for a man of his age, when he was originally diagnosed. The neuro said he had "moderate" dementia at the time ... three months later, he was so much better she was afraid she'd misdiagnosed him, and that he didn't have AD at all. (His symptoms are very sensitive to stress, and we'd gotten rid of some of the sources of stress by the second appointment.)
This is a good site for describing the "three stages" of AD:
http://www.theribbon.com/articles/3stages.asp
If you look at the seven stages on the www.alz.org web site, you'll see that they correlate the seven stages with the three: