We got referred to a new doctor who is supposed to be the new cognitive specialist and I really had high hopes for her. Not in curing my husband but in making life more manageable. We had our second visit yesterday and what a disappointment, she is still pushing for more neurotesting to be done. Mini mental showed last visit score of 11 and this time 10. He didn't know what day, what year, what day of the week, couldn't write a sentence, didn't know the season, well you get the picture. So the doctor had the social worked come in and talk to H while she kind of watched the interaction. Both the doctor and social worker talked to H like he knew what they were saying but he was making those non statement statements like I know what you mean. Oh of course I know that. That is something I would have to think about. Perhaps they were saying the things for my benefit but looking at H for his reaction. They mostly were telling him how much I need a break because I have had to take on so much more responsibility, blah blah blah. The doctor still thinks it is FTD because now he has word aphasia and thought aphasia. She thinks it is the Seroquel but she doesn't see how as the day goes on and the Seroquel wears off he gets worse not better. She suggersted stopping the Alzheimer meds as they might make things worse if it is FTD. I told her I was fine with that and she said we would know if he starts getting worse off of them. When I asked her questions regarding the previous tests done by the neurologist, she had to go back in the file and look at what he had written. Aren't they curious when they get a new patient to read up on the history of what has been done? I'm so disappointed in the doctor. At one point, I'm just sitting there with tears rolling down my face uncontrolled, geez, and H is totally unaware of that which is a real indication of his decline. So in the end she gave me the refills for the Seroquel which I asked for and told her the dosage I would like to use with some leeway and we are to try to use as little as possible,,,,,,DUH!
The doctor took notes and at the end this is what she gave me. 1) Stop Namenda 2) In 2 wks stop Razadyne 3) Use the 3rd dose of Seroquel as little as possible 4)Continue Singular for allergy 5) More consistent Afternoon naps 6) Time out for Jules.
So yeah in the guilt department, now I have to take on everything and answer to them if I don't organize the time out for me. They suggested leaving H with my daughter in law while I went to do something. That sucks because I want to do things with her and the girls, not by myself. The point of having her here is not to have her take care of H. So I just wanted to write that out really, if anyone has thoughts along the line of this.
jules you may see an improvement off the meds -DH has always had allergy/sinus issues but i tell you i have had to stop all of those meds as well as they made him quite loopy, even the zyrtec he took for yrs. hope things work out for you soon. and do get some time away even if it has to be by yourself for an hr or two- sometimes we have high hopes for new doctors but i believe most have the same initial approach to AD. divvi
Jules: In my situation, I wouldn't even consider taking my wife off of her meds. No matter what any dr says. They have been an absolute life saver. Before meds, she didn't like herself, me (especially me) or anyone else. She was so agitated and mean that life was unbearable and now she is calm (calmer) and nice (almost). She also sleeps at night which is nice for me. Thank the Good Lord for medicines. Wishing you well.
My husband also has FTD, he no longer takes the Razadyne...saw no difference after stopping. However, he does still take Namenda, from what I have read Namenda is the only memory medication, that may be of some help with FTD. Also, his Neurologist stated the Namenda is the only one that can be stopped & when re-started the patient had more of a chance to regain his/her functions before stopping. I am just not ready to try stopping the Namenda yet.
My husband was taken off the Namenda in May. He has declined since stopping it BUT he was declining while on it and the doctor felt that it might have been contributing to his agitation. We are coming up on 2 years since diagnosis and his decline has been fairly fast, with and without medication. Seems like everyday there is something that he can not do that he could do the day before.
Jules - when we went to the neurologist in Vegas he didn't even look at his chart of MRI results until after we arrived. It was only after I asked questions did he look at them. What did he think we were there for?? His diagnosis: due to family history, may be AD. That is when we decided to leave and go back to Vancouver, WA where we had more trust in the doctors at the VA there. When I read the neuropsych report he put someone else's name in one paragraph. When I called the neuropsych to tell him, he apologized saying that is what happens when you work with more than one patient at a time! What a confidence booster. Yesterday at the neurologist, I kept asking questions about past reports, etc. and at one time she said something I questioned. She apologized and said that was from someone elses file. Evidently when they are reading patient files, they can have more than one open. I like this doctor and trust her, but that error just shows how bad having everything computerized can cause mistakes - not foolproof as some want us to believe.
I believe the doctor is only as good as we force them to believe. If they don't rise to our prodding, then find a new one. I pushed and asked about other doctors comments and she replied (pcp mentioned LBD; neuorpsych mentioned FTD). She sees no evidence of either yet so is sticking with EOAD.
I also asked about all the trials going on at OHSU - which one she felt had the most promise. She said none showed real promise so if we wanted to try one, that would be our decision. She did agree the BAP had its dangers and has not really showed much promise. I brought up the trial in S. Korea using Korean Red Ginseng - she had not heard of it. She did say if I find something out there in supplements and want to try, go for it. Just research and be aware if there are any known dangers.
Charlotte, that error sounds like the doctor was cutting and pasting. He wrote that paragraph for some other patient, and it applied to your husband as well, so he (or his assistant) just copied it and pasted it into your husband's report.
It is the kind of thing that happens all the time in legal and corporate situations. And I did it myself, quite a bit, so I know that it happens, why it happens, and that the person doing the actual computer work can't find the error themselves. The doctor, if he wasn't the computer operator, needed to actually READ the report he was signing and did not.
Jules wrote: "Aren't they curious when they get a new patient to read up on the history of what has been done? "
Not so as I would have noticed from any of the doctors we've seen. It is mind blowing to me how they can pull out an MRI or neuropsych test which has been sent to them and for which we make an appointment to DISCUSS with them after WAITING for however long after the tests were done. ONLY to sometimes even have to remind them WHY we are there. "Oh, the MRI, yes it's right here." And then he begins to look at it as though he's never seen it before.
Forget Dr. Welby (remember him?) I want Dr. HOUSE. My favorite t.v. show, a doctor who is CURIOUS (you hit the nail on the head with that observation). His personality sucks but it's so cool to watch even fake doctors CURIOUS enough to make a real effort at getting an appopriate diagnosis.
Wish I had some answers, but I definitely feel your pain. it sucks.
Zyrtec apparently can cause drowsiness in some people. Safer to stick to Claritin, 11 bucks for a 300 day supply at Costco if you get their Kirkland brand generic. (non-prescription)
Yup, I think you all have been to the same doctors as we have. We are discouraged and bummed out. By that I mean mostly me but that carries over to him also, when I'm bummed. Shanteuse, I should probably try some of those over the counter remedies as the Singulair is expensive. Terry, I also love House MD. I love the puzzle. Charlotte, my daughter and I were wondering why they even order an MRI when the standard reply to your questions about it is, well you know, the MRI can't show you the plaques and tangles related to AD and ours just shows typical to age. Geez, that helps us a lot! Kadee, I wonder why we didn't stop the Razadyne first if there is a chance that Namenda helps with FTD? Geez again. Dean, I understand you not wanting to stop the meds for your wife. Only 6 months ago I would have said the same. Divvi, we are three days now and I don't see any changes, only continued wackiness. I think perhaps next to go will be the singulair as it is expensive and the prescriptions I bought yesterday cost me 435.00. Ouch!
I had a break today as a friend of his took him for a drive and when they got back and I was asking his friend how it went, he got all teary eyed and said how much it hurt him to see his friend going this way. I'm thinking he won't be prepared to offer again even though I said next time could you just go for coffee or a half hour drive to let him know it doesn't have to be an big adventure. Thanks all for the comments.
Jules, the Claritin generic is NOT a substitute for Singulaire. I know it is incredibly expensive, I use it too. When I don't take it, I definitely can tell the next day that I should have taken it. I take both the Kirkland version of Claritin, AND Singulaire.
I've been wondering if we could get Singulaire more cheaply from the Canadian pharmacies that were the topic of discussion on another thread.
I was asking the neurologist Monday why she does not put Art on Namenda. I told her most all of yours spouses are on Aricept, Exelon, or galantamine (Razadyne) plus Namenda. She says it has only been approved for moderate to severe AD by the FDA. The VA will not give a drug for a condition it is not OK'd for. And in her opinion she has seen little benefit to giving it early on. I was looking at what the dork neurologist in Vegas prescribed and it was aricept. Evidently the VA gets a better deal on galantamine so went with that.
Jules - it is frustrating. But, since they don't know what causes it, they are only 'practicing medicine'. That is why she said she would not recommend one trial over another nor say not to try something I read about like coconut oil or red Korean ginseng.
jules i think it may take a few days to work the meds out of the system/kidneys once you stop. some have a long 'half life' and are longer to work thru the body. surely there is a generic that could work like singulair thats not that expensive? thats incredible!i do know any allergy med even benadryl will make them loopy so keep in mind it could be the singulair causing the reactions. i use vicks on occasion in the nasal tubes and he is happy with it. i know not an RX and surely not the best but no side effects like before. i realize some may need the allergy meds and have to stay on them. divvi
So the weaning is going okay. I'm seeing that his ability to process what I tell him and what he responds is totally not connected. A new development is that he thinks we just met and I don't know any of the things about this area even though I have lived here all my life. He is the new comer to these parts. If I say can you go get you shoes on, he will respond with I think she lives over there and has for quite some time. So there are words that sound reasonable but not in the proper context. I have continued with the Singulaire for the time being in that we don't want to change too many things at one time and not know what is causing what, but that, I think, is going to change also. It's a hard road with many tough decisions to be made but life is like that, don't you think?
Yup, you are right bluedaze. Today for just a few moments he was talking about some things obviously from happier times and he was smiling and carrying on in a light hearted manner. Even though it wasn't understandable to me, the essense of his happiness was palpable and I was pleased for a moment that he could be enjoying something.
jules my dh does a lot of sentences not connected and most time I can't tell what he is talking about. I will usually say yes or ok. Today he responded with "then tell me about it". Had to backpedal.
My father had vascular dementia and was in a nursing home. My mother described a long conversation he had with another patient. The other man talked a lot, but Mom couldn't understand anything he said. Dad kept replying, "I know just what you mean!" Sort of like "then tell me about it".
Yesterday my husband picked up the tv remote, put it to his ear and said, hello, hello. Paused for a moment as if listening and then handed it to me. "It's for you," he said.
my DH does the same with the remote too. thinks its a cordless phone i guess.
yesterday he had my cell phone and was trying to dictate into it. AWWW!!! he was an atty for 50yrs and always dictated his briefing into those little tape recorders. divvi
News update............we are back on the meds. After three days off the Razadyne he was in such bad shape I was sure placement was in order. What a sharp decline in just three days! So I called the dr. office and told them what was happening and the doctor was upset!!!! Oh geez, I'm so sorry for her that her snap diagnosis after a 45 minute interview was wrong. So she says put him back on everything. I asked if I should do that all at once since we didn't start that way and she said put him back on everything. The next morning he was throwing up 5 times, no warning just urpping unexpectedly but after two days he was doing better again. i know that we lost ground that we won't recover though. i'm not taking him back to that doctor either. On to the next one.
It's so difficult to find someone. At this point I too, am becoming discouraged. We've gone through several doctors, who he won't see anymore, and that he remembers. (if they mention driving, he fires them)