We were told today - after two years of this MCI mess, that my LO actually has beginning stages of AD. I know this sounds sick, but it is such a relief to me. I have been seeing strange behaviors in my LO for years and they have increased in the last two years. I have read everything I can and I can see that he has the symptoms of AD and his early tests confirm that. But we have been living under the MCI label. He was on Aricept since the diagnosis of MCI but seems like that is a diagnosis that really says "don't believe anything the caregive says and go to therapy and everything will be ok." He was finally put on Namdea - not sure how to spell that yet. So for the first time in about 5 years I am happy with the doctor, the tests and the diagnosis. I don't want anyone to have this awful disease, but I think it should be diagnosed - at least for us - in a more timely manner. It has been a living Hell - everyone acts like I am crazy and trying to make him look bad. At least we both know what we are looking at. So, for all of you with the curse of MCI - there is light at the end of the tunnel. Maybe it will go away.
faith&hope, I have agree with your comment that everyone thinks you are trying to make DH look bad and they don’t understand. My DH received the MCI diagnosis a few months ago. When I confide in my family about this, they usually say something like "men are like that anyway". They just don't understand how strange it is to see DH doing just fine and sometimes he can't do a simple task. For instance, when I'm doing the laundry, I ask him to retrieve ALL the empty hangars from the closet. We always place the empty hangars in the front but he just brings a few of them. Since I work, I have to make sure I mark his pill case with a tape flag so that he knows which ones to take during the day. He took two days worth recently and it scared me. Doc said his 10 mg of Aircept was no cause for alarm but might have some side affects. (It did not appear to do so.) I may end up just leaving out only the pills he should take while I am gone. It is really hard for me to understand this disease and find myself getting frustrated. I am ashamed to say that I do slip and fuss at DH about these little things. I have to keep remaining myself it's not him--it's this awful thing that has invaded his brain.
texasgirl, of course you fuss. One of the hardest things that happens with us is the person we used to lean on when things got rough has become the one person who you can't lean on any more. It is hard to change a lifetime's worth of habits overnight. Knowing it is the disease is not the same as always remembering it is the disease.
There was some small thing I needed someone to do for me a few days ago. I don't even remember what it was. What I do remember is the totally blank look I got when I asked my husband. He didn't have a clue.
And I absolutely, positively haven't got any patience for that sneer I get when I ask him something he doesn't understand. I now recognize that it was one of his coping techniques. Obviously what I asked was weird and bizarre and it was obviously my fault that he didn't get it. <grin> What is funny is that it doesn't work anymore. He doesn't quite know what to do about that.
If not, how long before they progressed to AD or for some here I think it went to FTD?
Does anyone know someone that was diagnosed with MCI and not progressed?
My hb was initially diagnosed with early AD. We didn't like that neurologist due to him not being very co-operative so we came back to the Portland area. The neurologist that works with the VA (her specialty is AD) said it was amnesic MCI and that there was no evidence of dementia yet. She left him on the galantamine the other neuro put him on. Yet, when we went to see if OHSU had any MCI studies he would qualify for, they were all for people with mild to moderate AD.
Someone mentioned on another thread that maybe they use MCI too often. Is it really a diagnosis that the doctor feels might ease the transition into AD? If so, it does not make it any easier. It makes it harder - still feel like we are in limbo waiting for a diagnosis. I don't think MCI would qualify for SSDI or other programs since it is not considered terminal.
Don't get me wrong - we would love nothing better than to be those that are stuck in MCI and does not progress. But then that leaves him unable to work at anything that takes remembering yet not considered disabled. WE are stuck between two worlds.
Charlotte, my DH was dx'd in 2003 with Alz. However, after starting him on aricept and namenda (and cutting back to the lowest dosages of each), everyone now says it was MCI and he has not declined very much. He still does most everything for himself, reads, watches tv programs and understands them. He does not drive, gave that up on his own because he said he didn't think his reflexes were good enough. He is basically the "same" person - but not all the time. Most people would never know anything is wrong. HOWEVER, we cannot travel at all. He just gets sick at the thought and when we have tried, it is miserable for everyone concerned. So, I keep him home, keep the stress level at the lowest possible decible, and hope that he remains in this stage. (He will be 86 April 29th).
On MCI--it's my understanding that some with this diagnosis never progress into AD, but most do. Interestingly, I/we felt the opposite of some of you in that it gave us a chance to adjust to the diagnosis, with a shred of hope that it wouldn't progress into AD. When it did become AD, it was a disappointment, but not as much of a shock as if he had been given that dx from day one.
Sunshyne--My confusion on this may be because there are two types of MCI. I thought the one type (can't remember the name) usually does not progress to AD but the other type does. Will check the thread you brought to the top.