Well, my husband and I are going to the Mayo Clinic in the morning. As I told you before, his current neurologist thinks he is too young to have Alz (62), which makes me nervous that he doesn't keep up on the medical journals. Plus B. has been on Namenda for two months and I think it makes him more confused, but more cognizant that he is confused. I would like to get him on the best meds for him and get an "official" diagnosis. I know they can't definitively say it is Alz. but they can come pretty close.
Best of luck shoegirl. I can understand the doctors not thinking it was Alzheimer's that young 10 years ago, but not today! Tragic. I am glad you are going to have him evaluated at mayo. Best of luck! ~Nikki
Hi everyone and thank you so much for the well-wishes! Things went pretty well today...I was very impressed with the quality of care at the Mayo Clinic. B. was seen by two doctors, one neurologist and one cognitive behavior specialist, they spent a lot of time with us. They want to do a couple more tests...but are leaning toward a non-specific dementia. I am so tired, gonna go to bed, have to work tomorrow...will give you all the details then.
Actually I didn't tell B. about it until the night before and then I just told him we were going to a new dr. I prefaced that with "I'm going to tell you something and I am really, really tired so it would really help me if you don't get angry. Just listen." He said okay. When I told him, he started to get mad, but I said just take a minute. So he was able to do that. Still didn't want to go, but I told him we were going because I wanted him to see the best dr. possible. He was pretty anxious about it all night.
The Mayo Clinic is pretty big, I saw a lot of older people were having a little trouble finding their way. I held onto B.'s arm or hand so he couldn't get lost. Like I said the dr's were great, very thorough, very experienced in dealing with people with dementia. Asked B. questions in a way that allowed him to maintain some dignity.
They are thinking B. has dementia, but not Alzheimers, not FTD. We will be going back in a few weeks...one thing they want to do that I am not sure of is a brain ECG...B. can only have 4 hrs of sleep the nite before. That sounds really harsh and difficult and I am wondering if it is worth it? Anyone have any experience with that?
Since the namenda is not really doing great things, they are thinking about an exelon/namenda combo.
I feel better because I feel like at least I am getting some straight answers.
Did they put him through a neuro-psychiatric evaluation (3-4 hours of cognitive testing)? My wife only agreed to our visit at Mayo this week if I promised that there would be no further cognitive testing (mini-mental).(The original neuro-psych eval reduced her to tears for two solid days - who really enjoys being tested to failure?) The doctor agreed and so there was no formal testing, but he asked the pertinent questions in such an informal way that she didn't realize what was happening.
Mayo is very cautious/conservative in making a diagnosis (it's like that in every department at Mayo) - they won't say that my wife has Alz., but that she has early-onset dementia with Alzheimer's-like symptoms.
He had a neuro-psych 2 yrs ago and HATED it...i told him he wouldn't have to go thru that again. When neuro at Mayo suggested doing it again to see where he's at...but we said no thanks. They did the same...asked questions, they did do the minimental (I hate listening to that).
Shoegirl ---I know just what you mean. Paul hates it too and it just wears him our. WVU has him doing them without me in the room but his first one was 7 years ago at another place and they let me stay with him part of the time. It was just heartbreaking that he couldn't draw a simple figure or choose a particular card, etc. The last test he had 6 months ago he was down to 18. A significant drop from 2 years before. We go to WVU again in 2 weeks. I debated about going this time but decided we would to see what she thinks about his stage.
I don't think most neurologists pay much attention to the Alz. Assoc. staging scale - although I think it's a great system. Mayo has my wife classified as moderate (on the mild - moderate - severe scale. On the Alz. Assoc. scale she is a solid stage 5 with signs of early stage 6 - so I guess that puts her at 5+).What kind of staging system/scale does WVU use?
I think that going through the Alz Assoc. symptom/sign checklist will give you more information about his stage than the mini-mental. But as long as he's not reduced to tears, like my wife, go for it.
shoegirl - how has Mayo classified your husband and how does that compare to what you've found on the Alz. Assoc. 7 stage scale?
I think we know the decline is there but we want reassurance that we, as caregivers, are not losing our minds also. It seems to give me a timetable, of sorts, to be prepared for the next things coming up. Similar to logging on to this site all day. I have learned so much from reading your postings. Much more than what I receive from the Doctors.
Also, I think all of us harbor a secret yearning that MAYBE there will be a miracle just around the corner. Hope is good and when we allow ourself to lose hope both spouses suffer. That is the way it works for me.
good morning , this is the very first time I've ever written a comment about anything. My daughter wanted me to communicate with others to get help. I've reading your comments this week-end and I've already gained so much insight.my husband of 42 years has Alz. we think he's had it for at least8 years but was only diagnosed 4years ago. He is 64 so alot of the things you guys are discussing is comming about right now for us. thank you for being there at just the right time for me.
Welcome nanapapa, Sorry to meet you under these circumstances, however, I am glad you found this forum. This is a great place, very helpful & no judges. I feel it was a godsend for me. You might like to post on the Ages post & Where are you from. Again welcome.
Thank you for the big welcome I feel like I've been spinning my wheels trying to find info .I've tried reading everything but you just have to experince it first hand. I've had to take a leave of absince from my job till I can get help.
Actually you don't have to experience it first hand any more. Just keep coming in here and reading. You will learn more here than in any book. I think the fact that it isn't totally organized makes the learning easier. You get all of it in small doses, frequently with humor, and always with love.
I guess everyone feels alittle overwhelmed at first and with each stage . My husband was in the hospital last week for the very first time ever and that one visit he had such a significant change and has not recouped the dr's feel he is in the later stages now. before he knew his children now he doesn't
shoegirl, My DH had the neuropysc tests last year. They were 3 hours each on 3 consecutive days. When we went back a couple of weeks ago to the neuropsyc he wanted Mac to take the same tests......Mac flatly refused. He said he didn't see the point at his age (80). I know the test really wore him out. We see his neurologist next month so we'll see what he has to say.
Welcome to my website. Yes, everything is overwhelming at first. You have come to the right place for support and information. Please log onto the home page - www.thealzheimerspouse.com- and look on the left side. There is a section called "Newly Diagnosed". It is for the newly diagnosed and new members to this site. There is a LOT of information and support there, and it is a good place to start. I would also suggest, on the home page, scroll down to Need Help - and read Understanding the Dementia Experience by Jennifer Ghent-Fuller. Excellent source of information. Also, click on the "previous blog" section and read the Welcome Blog - it really hits home with spouses.There are blogs there on every subject, and I continue to write daily blogs on incidents in my life with an AD husband that most spouses relate to.
We are all spouses who understand each other - you will get the kind of support here from spouses that you could not get from caregivers taking care of parents and grandparents. The emotional issues are completely different, and it is why I started this site.
Welcome nanapapa...I'm glad you found this place! And I am sorry that you are in the circumstances that would bring you here.
iggy- Mayo hasn't classified him yet...we go back in a couple weeks. But I would say Stage 5.
lmohr- I know what you mean about how difficult it is to watch that mini mental test...to see them struggle with something that used to be so simple for them. It is particularly hard for me to watch B. struggle with the math calculations, I used to call him the human calculator because he was so good with doing calculations in his head. It is a stinging slap of reality.
Jean21-I can't imagine how grueling that must have been for both of you. I don't blame Mac for saying no.
Welcome nanapapa, I am glad you have found Joan's place. Keep posting, you are among friends who truly understand.
Shoegirl, I am glad your visit went well and you feel a bit better. Lynn didn't have to have the ECG, so sorry I can't help on that. I was just thinking when I read your post, it is Mayo, they must have a reason for wanting to do it. Did they tell you what they hoped to find with the test? Maybe that could help you decide.
Best of luck and keep us posted on his next appointment.
Who asked about the ECG test? I just had one of those.
Basically they were trying to find out, in my case, which nerves had died and which ones weren't working right.
You should know that the test runs from uncomfortable to painful. At one point I screamed. He warned me that one was going to hurt. I'd need a really good reason to put my husband through it. It made sense for me because we really did need to know. At this point we can't do anything, although my doctor is looking into physical therapy. She hasn't called back so I guess the answer on that one is no.
Good to meet you, nanapapa. I've been here since mid-July. Can't begin to tell you how much i've learned. What's so amazing is that when DH does something 'different' I recall reading about it here and realize it's not out of the ordinary for AD patients. It just makes it so much easier. Before, every time he did something I didn't understand, II would stress out and justmake life miserable for myself.
This is a good place to be. I hope you find it as beneficial as we all have.
shoegirl, before I had that test done, on someone who has been diagnosed and where you think the diagnosis is correct, I'd want to know exactly WHY the doctor wanted it? What does he expect to find with this test? What would he do about it if something is wrong? Also ask about the pain. It is possible that the version of the test I had was painful because of where they were checking and why they were checking.
Going back to Mayo Clinic in the morning...B. is getting a spinal tap...I didn't tell him about it until tonight...he is feeling pretty anxious about it...they are checking for any type of inflammation.
Hoping I can keep him calm and that it doesn't cause him much pain or discomfort.