DH and I saw a neurologist today (FINALLY) who said FTD. Doc wants him to do neuropsych and EEG, but I am unclear as to whether this is part of the diagnosis process or just to access how far along the FTD is. I have a call in to the doc but want to see what you all know. DH is SO MAD that I have taken him to this doc, he says, so I can prove the he (DH) is crazy, and DH says he refuses to go to more appts (neuropsych and eeg). So, it is absolutely necessary for him to go to these other two appts...if I have to insist it's going to create havoc on our family life and we have a six year old only daughter. Can't we just know it's FTD and let it play out rather than finding out how far along it is and keep him happy and keep the peace? Can we have a formal diagnosis of FTD without these two tests? What do all you wise people think?
My husband just had the neuropsych testing. The first day he had 4 hours of testing. The next week he went back and quit after an hour saying he didn't need anymore testing to know that his memory is gone. The neuropsych dr did mention possible FTD but then his primary mentioned LBD. We see the neurologist next month and will get her opinion.
The testing is good in that it test different areas of the brain to see which areas are affected. It doesn't sound like your husband would stand for it. MY husband has never had the EEG. If he loves his daughter he should do it for her. She is so young and needs her daddy around as long as possible - sick or not. And as others have said, different dementias respond to different meds.
I hope you can get him to do it for your daughter's sake. But, then he might be too far along for this to work.
Marise, H has had a 4-5 hour version of neuropsych tests annually three times now. It's very instructive for me to see just how impaired certain areas are so that I don't expect him to do what he can't. (executive functioning has him at the bottom 20th percentile for instance). And the first time his when his first neurologist ordered them he said it was important to get a baseline. Now, how to get your H to want to take the test? The psychologist who gave them to H had a great positive way of presenting the information to H with statements like: "you'll see a decline here but considering how high you started you're still well within the "Average" range so you have nothing to be ashamed of in social siutations." I think that had to be reassuring to H.
Oh, and he wrote something at the end of the summary about H being legally competent at this time. So maybe that's another avenue to entice your husband. If you could get the neurologist to give him some reasons why this will benefit him. My H was impressed by "getting the baseline" and I remember hearing him mention that to family members.
Also maybe focusing on how different parts of the brain are more affected than others and knowing the details can make it easier to learn to "compensate" or maybe there are specific compensation exercises.
After awhile I think for most they do lose their value as it's clear how they're declining and the testing procedure becomes depressing and stressful without the initial benefits.
My husband had an MRI, EEG and the neuropsych testing. All of this was done to rule out other things. The EEG was to check for seizures--he had none. The MRI showed the atrophy of the frontal lobes. The neuropsych testing showed where his problems where. After all of this we were told "probable" FTD behavior varient type. His neuro told me its always probable since the only way to be positive is upon autopsy.
It is best to get every test possible to rule out other causes of the symptoms and behaviors. And to help with treatment. Being treated for the wrong type of dementia only makes things worse.
Marse, I have had to deal with DH getting mad at me for taking him to the doctor. Everything that might have a negative impact on him is always my fault some how. And we only go for the tumor not for anything else. I agree with Joan and the others that the testing would be a good idea but you also need to keep as much peace in your home for your little one as possible. Usually with my DH, if I let a topic drop for a few weeks he will either bring is up again as his idea, or it will come up in another way and then can be discussed again. If it's his idea, he will do it. You are walking a fine line between keeping the peace and doing what's right by him. All you can expect of yourself is to do what you can. I have learned that I can't make him do anything. I'll bet he will come around in time. I liked the suggestion of another poster that you can ask the doctor to test you both. Because that way, if you really are crazy like he says you are, that will come out in the testing. this approach really worked for someone. Just an idea.
Jim had a neuro/psych back in Nov 08, impaired, but only a little slower than expected for someone his age, 61. December had an MRI which showed atrophy, leading the Neuro to tell us he had dementia, but not what kind. Then in March came an EEG to rule out seizures and that showed abnormal brain function, but no seizures. April brought us a Contrast PET Scan which showed FrontoTemporal Dementia. We had our Diagnosis. We were given the prognosis of 18 mos before he would need to be placed. We recently had the 6 month follow-up MRI and will get the results next week. The Neuro is doing some cognitive testing himself where he has a good relationship with Jim. He also wants to do a Spinal Tap, says that may satisfy Jim's need to know more about how far along he is. I say Stage 4 slipping into Stage 5. For meds he is on 60 mg Paxil and a bit of Wellbutrin for depression, 0.5 mg Ativan for anxiety, Primidone for tremors (he has Parkinson "like" syndrome), Seroquel 100mg in the am and 150 at bed for mood and sleep, Ativan for sleep. He is fairly compliant, failing, using a walker, but awake more during the day since we increased the Seroquel at night. Seroquel has been sent from heaven, it is wonderful. Hope this helps, welcome tho the FTD Club. Sorry you have to be here, S
Susan I agree-what would we do without seroquel. Once the diagnosis of FTD is made the drug should be given. Interestingly on another AD site there was a long thread by a poster who claimed seroquel killed her father related to the black box warning.
I believe it but when you look at the options, I see no choice. My hb does not need it - I am going from what so many have posted. Sometimes you have to ignore the warnings. And, after all they are going to die eventually. Why not make the journey as easy as possible?
My DH has FTD all also...or...guess I should say the doctor thinks he does. Dr. said they never know for sure what it is until they die. He had the eeg because several times a day he would just sit and stare. The neuro believes he is having silent seizures. He is like he is out of it for a time. The above is what our private neuro says. He also goes to a VA doctor. They wanted him to have another MRI and that neuropsych test or what ever it is called. The neuro told me not to put him through those tests that we know what his problem is and has been for 3 - 5 years. The only difference in his treatment now is that I have to take him back to the neuro every 3 mos. instead of every 6 mos. He said he needs greater attention to the meds.
Judith, my husband has sat and had trance-like stares with eyes wide open for over a year now. It's very common with AD patients and I was told not to worry about it. Alzheimer's IS what it IS, and sometime I think his brain just shuts down. I don't know the stage your DH is in, but after a while, I have decided all the tests, trips to the doctors' offices, etc. are just torture for him. We go for our six month check ups, but I am thinking about putting a halt to the MMSE tests. It doesn't help him - and just causes agitation and dispair. He was given his definitive diagnosis about 4 years ago, but has been sick for about 8 years at least. They are not going to be cured, - and I think his progress and decline is being noted simply for their research materials. His doctor is well known for her research programs. I hope I don't sound like I don't care. I care too much to subject him to these series of tests that upset him and scare him. I see the fear and dispair in his eyes and I just cannot bear to be the one who caused that look.
My husband does not have them but his neuro said that staring spells where you cannot rouse them are a form of silent seizure. He was tested for them as they can cause further deterioration