I started to write a blog after we returned from today's neurology apt., and decided the situation wasn't worth a blog. Especially since the news is the same as it has been for 5 years. As long as they are going to base a patient's decline solely on the Mini Mental Exam, my husband is going to die of Alzheimer's Disease, still acing that stupid test.
When I look back 5 years, I can see tremendous changes and declines in Sid's mental and emotional states. His day to day functioning and cognitive abilities are vastly different than 5 years ago. BUT he scored a 29 on the Mini Mental today. Therefore, according to the doctor, he has not declined and is doing fine. To which I said - "Come live in my house for a week, and then tell me how he is doing." Luckily, our doctor does understand the difference between the Mini Mental and daily functioning, but on paper, Sid looks just fine and dandy. Statistically speaking, the doctor said that Sid should be scoring a 15 on the Mini Mental, since the average patient declines 3 points a year.
The doctor also mentioned that Sid appears much calmer than he used to. Yeah, well, that's because I'M the duck paddling like crazy underneath the water to make sure Sid's life runs smoothly and without any routine changes or surprises, so he will remain CALM.
It's days like this that make me think I am truly crazy.
Oh, and FYI, for those who are interested, I learned this today:
Aricept 23mg. is NOT available in generic, is VERY expensive (he didn't say how much), and can cause a lot of gastrointestinal distress.
Axona is better than coconut oil for memory (according to our neurologist), BUT he recommends NEITHER for diabetics.
Oh Joan, Joan, Joan! I so understand what you are saying! Our visit was last week. It was 3 days long.....However, the doctor is very understanding and has offered to speak with the family, who still believes my husband is just fine. Remember, if you LOOK good, you are FINE!
DH testing did seem to prove the theory of the PCA variant of AD. I guess that made me feel less crazy? And finally, that wonderful MMSE declined. So, should I be happy? Of course not, but is this what it takes to validate what WE already know?
Ohmygosh, Joan. I wonder if I'd score a 29 on that test. ...based on how much MATH counts. I've practiced counting backward from 100 by 7's for years and think I have that one down...but if they come up with another number, I'll be sunk. I can still draw a clock and spell WORLD backward,... but again, what if they change the WORD.... worrrieeeed!!!
I looked up the test and know that my DH could not do 90% of it! nor could he have done it for quite sometime now. But he looks good and can still fool people who don't really know him. On the other hand, like Nancy B, I would have to practice counting backward by 7's! My brain is fried as a result of taking care of DH.
Joan, it must be frustrating for you to see him do the test and yet still be so far into this dx.
joan thats a double edged sword. he doing really well on that test but you live with all the other declines not seen in a 30min appt. i guess the dr is validating he may live many more years with that score and slow decline. thats a very high score for him at this point.i wouldnt want to guess if thats good or not for you.
Joan, you mentioned that you think that the neurologist visit is a waste of time. I wish my DH would still go. He did not do well on the mini memory test & it would be interesting to see the decline every 6 months. His last visit was June of 08. I just looked at the paperwork & it showed that he refused the MMSE. His last score 6 months earlier was 18/30. I don’t know what that means, but I’m sure he would score lower on it now. The other reason I wish he would go is because I would hope that when he needs his meds adjusted the neurologist would do it. Now I have to depend on our PCP.
I don't know how they gave him a 29, because he counted backwards 100, 93, 86, 79, 72, and that was it. Couldn't do anymore. He could not spell WORLD backwards, but got every other question correct, even the ones he always misses, like the date and remembering the 3 words. He REMEMBERED the 3 words, and tonight we were sitting in the den. I said - As per our conversation this morning, you said you would take a shower at 8 tonight, instead of having to get up early tomorrow to take it before we go to group. And he said to me.....................I swear I don't make this stuff up...................he said....."What conversation? I don't remember that conversation. Why don't I remember that conversation?" AAARRRRGHHHHH!!!!!!!!!!!
By the way, I am a math idiot. Never could understand math, but I figured an easy way to do the backwards counting. Just subtract 10 and add 3. Goes very quickly that way. Of course, if I ever get AD, I won't remember that, so it will be of no use to me.
I personally think we should all have "nanny cams" in our homes to record our family member's conversations, actions, etc. and bring in the video to the doctor's appointments. Actually, my husband also is much happier and calmer as well, especially since he hasn't worked since last summer. Just like you, Joan, the stress is all on me -- figuring out all the financials, recording expenses, cleaning, cooking, etc.
I will say that although my husband functions very well in our home, if we do go somewhere we haven't been for a while, he is totally reliant on me. About a week ago we went to the opera in Chicago, something we did for seven years until the tickets got to be too expensive for us. We always used to drive down, but I insisted we take the train (just a 10 minute walk from our home). It was interesting for me to watch my husband navigate downtown Chicago. He basically knew where we were walking, but he just couldn't remember what time the performance started and asked me over and over. He panicked at the first intermission when he thought he forgot his jacket in the car -- I had to reassure him that we had checked it and that we had traveled down on the train. Then during the second act he said out loud "Boy that sure is a funny wedding" when the two main characters were proclaiming their undying love -- and it wasn't a wedding!!
When we got off the train back in our town, he said "Now, where did we park the car?" Just couldn't let the car thing go --
But this is a guy whose mental math ability is still far better than mine and probably can still solve complex equations -- go figure!!
We say our Neuro-psych Dr. in January.When tested to get Dxd, he only scored 11 on thre MMSE. IOf course I don't know how they expected anything else because of his Learning Disabilities and Mental Illness. hE ACTUALLY GOT a few right on the MMSE the nurse gaVE. I still don't get how they measaure this when he's learning disabled,. It's in his records. She asked him to spell World. I messed up and butted in to rfemind her of LD's. She followed up by handing him a sheet of paper to read to her.
I went recently with hubby to a specialist appt (for another medical condition). First time to this dr. Dr started asking questions to get history----first question hubby obviously didn't get and dr interrupted DH's reply to re-state the question. By #3 question, DH was telling dr to ask me as "her memory is much better than mine . . . I don't have a very good memory".
So near the end of the appt, the dr asked if we had any questions and I quietly asked if cognitive changes could be a part of this other medical condition?? Dr asked me why----I replied that several family members were voicing concerns to me about changes in hubby's cognitive abilities. Dr asked me what specific changes and as I started to share first one (memory processing during conversations), my hubby----on hearing the word "memory" announced that "I don't have any problems with my memory . . . family dr checked me and said I was just fine". Just like that!!!
Obviously he had already forgotten that he initially had told the specialist that he didn't "have a very good memory".
(Specialist did tell us that very occasionally cognitive changes can be a part of this other condition but it is fairly rare occurrence . . . would need neurological testing.)
On my way out (hubby was already out in waiting room putting on his jacket), the specialist told me had noticed the discrepancy. I asked if he'd note that in report back to family dr (along with the suggestion to obtain neurological testing). I sensed the specialist hadn't been planning to but might following my suggestion . . . hope so.
I thought hubby might be annoyed that I'd mentioned anything about his memory . . . expected an "off" mood . . . but no, all was fine. Not sure if he's aware and just wants to avoid dealing with it or if he'd forgotten or what . . .
By the way, family dr did do basic mini test with hubby (a couple of years ago) and dr told me that DH did fine on it. But dr said that is a very weak tool for testing and had suggested to hubby that further testing was in order but hubby declined . . .
Joan, on the MMSE, they stop you after you subtract 7 five times. For each one, you get one point. Sid only subtracted 4 sevens, so he lost a point. Spelling world backwards can be used in place of subtracting 7. The fact that he couldn't do it, didn't subtract anything, because he did some of the subtraction. When my DH couldn't do the subtraction, they let him spell world backwards, and then said he got a perfect score. The whole test makes no sense to me.
Elaine - I have seriously thought of the nanny cam idea - lol! I have even book-marked sites that sell ones that look like pens. Great minds think alike!
Then I thought - egads - this is painful enough living through it, I don't want to have to go back and watch the tape....