This is my first time to post on this site. My husband was diagnosed by neurologist #1 as having EOAD in June of 2013. He was diagnosed after taking memory test, two MRI’s, an EEG, a spinal tap and then a PET scan. We moved to another part of the state and started seeing neurologist #2. This neuro does think that my husband has EOAD, but I believe that he doesn’t understand on what level my husband is functioning on. My H was an Electrical Engineer. He has a hard time communicating (finding words, repeating same stories, forgetting what he was saying, will say one word for another or say the opposite of what he is trying to say). This morning he walked around the house wearing socks and one shoe, looking for the other one. I kept asking him if he found it and he would look around for it. It was right there in front of him, it was as if he couldn't see it. He doesn’t understand directions to do chores around the house. If I tell him to do one thing, he either completely forgets or will stand there until I show him or prompt him to do it or will go and do something completely different because he seems to have forgotten what I have told him to do but knows I told him to do something. Part of his job was to program computers, now I have to show him how to put in his password. If I ask him to bring me one thing, he’ll bring me something else or forget all together. He has taken things from stores (when I told Dr. about that, he told me I should make H a note to carry to remind himself to pay for it)! H forgets how to count money (I give him $10 to keep in his wallet) and does not know how to use credit card anymore, even to slide to pay for gas at pump (1. Doesn’t know where to put it 2. Puts it in upside down. He still gets out and stands by me while I pump though! LOL!). I had H not driving, but Dr. told him on last visit that he could drive unless I had concerns. I told the Dr. at that time that I had concerns regarding his reflexes, depth perception and ability to communicate with someone if he had an accident! He kind of blew that off! Yesterday, at visit, DR. told me that he thought that it wasn’t as bad as it seemed and that H only had MCI and that because I was around it all the time, it just seemed worse than it really was. Really??? I also asked Dr. if he knew of any support groups that we could go to besides the local ALZ group and he told me that I really didn’t need to be going to the ALZ meetings because my H wasn’t as bad off as the other ones that went there. I told him that there were individuals there that had the same symptoms as my H and that I needed the support. Dr. was very negative about it. I am frustrated with this neuro because I think that he isn’t being supportive and that he is the one not seeing the whole picture! Where we live, he is one of two neuro’s and the other isn’t accepting patients. Has anyone had this experience before?
It sounds to me that neuro #1 has made the diagnosis. At this point almost all of his care can be done by his family doctor. I would check with this doctor to see if he/she is willling to take on the care without a neurologist. That's what I did with my wife and she hasn't seen a neurologist in over 6 years. I did have to change PCP to get one willing to do the care. Also, you need all the support you can get, both on this site and in person. Regardless of what neuro #2 says, your husband should not be driving!!!! You should also check with an elder care lawyer to be sure all your finances and powers of attorney are in place and that your husband cannot get hold of the money and waste it.
good advice from Marsh. Once they are diagnosed there is little the neurologist can do until behavior problem crop up. Sounds like this one would not ever know what to do about that. The second neuro sounds like he really has no idea what Alzheimer's is all about.
We were living in Pahrump, NV when my husband was first diagnosed. The neuro we went to in Vegas had very little knowledge about Alzheimer's Disease. I told him we were going back to Vancouver, WA because the VA there had a dementia clinic. It was honest and admitted he had little knowledge, not his specialty, and said that was a wise decision.
If you can find a PCP or Geriatric doctor that will take over, do it.
Thank you for your suggestions! Yes, we visited an elder care lawyer after the initial diagnosis and he updated our wills and had a DPOA drawn up. I will check with his PCP to see if she will take on care without neuro. Thanks!
Perhaps neuro 2 isn't "getting it" because of your husband's age--he may not have much prior exposure to EOAD. It is commonplace for those with younger-onset dementias to be misdiagnosed--my husband was--because even physicians are biased towards thinking dementia only hits the elderly. Please continue to attend the Alz Assn support group and ask if they have any Early Stage groups. Even if it is MCI, it will progress to AD at some point. What you described about not seeing the shoe is a symptom of AD called agnosia. The eyes see an object, but the brain can't identify it. Do an internet search or search this website for "agnosia" and you'll find out what's going on.
I don't think our neuro ever got just how bad DH was. He always seemed so shocked at how fast he was progressing. We do live in a very small town. And from dx at 58 to his passing was less than 4 years. DH decline could be seen week by week to me. The neuro never got that. I think marilyn is right, he may not have much prior exposure to EOAD. Our PCP was our best help.
I agree with marsh. There is no need to keep going to a neurologist. Once they have ruled out other causes, there is nothing else they can do. A good PCP can do whatever a neurologist can. There is also no need to keep getting your spouse tested by a neuropsychologist or cognitive psychologist. There is nothing they can do, either. We got lured into the neurologist/psychologist system but after a year or so, I realized that there was no point to it quit.
The people who are most likely to be able to help you with practical issues are geriatric care managers or social workers who specialize in this area. But health insurance does not pay for their services, so unless you have enough money to pay them yourself, you're really on your own. That 's why websites like this one are so important.