Neuro/Psych Exam

Louise · Joined: 01 Mar 2007 Posts: 8 Location: Michigan

My husband-age 57 is scheduled for a 4-6 hr Neuro/Psych Exam and I am wondering how he is going to be able to handle anything so long! I know they said he can eat and take breaks- but his fatigue is so severe and when he is 'off' he is totally non functional (won't even talk). I am hoping he can somehow complete it from 9 - 1: because after lunch he is a 'basket' case. I really don't want to have to come back for a 2nd appt. What have your experiences been, and does anyone have any advise on how to prepare for that day?
Thanks,
Louise

Teryl · Joined: 26 Jul 2008 Posts: 29

When we scheduled my husband's exam, they told us that he could do it over 2 days if he needed to. You should call and ask if you can do it that way. He ended up doing it all in one day, and it was from 9:00 to 3:30. That is a long day for someone with PD.

sea · Joined: 14 Aug 2008 Posts: 169 Location: New York City

Louise,

I'd second Teryl's advice. You didn't say how inconvenient it would be, but it sounds like it would be best for your DH to do the exams on two separate days.

Otherwise, definitely bring lots to eat during breaks, and be sure to be very well hydrated. (Also, if he's used to the drug, he might try Provigil to stay alert. But not if you haven't already tested how he reacts to such a drug beforehand!)

OSCAR1727 · Joined: 18 Mar 2007 Posts: 3

Why would you want test taker to be other than who he/she is while taking test?

coacht · Joined: 15 Oct 2007 Posts: 89

Teryl
What did you husbands test results show? We have to go in to see what my DW's test results are when we get it scheduled and i am curious what they tell people.
Coach T

sea · Joined: 14 Aug 2008 Posts: 169 Location: New York City

They may not tell you what they really think. The majority of the providers we've seen believe that it is important to shield the patient from the harsh diagnosis of cognitive debility (if there is any). So, they've told me, or implied it gently to us in a way that my DH could not understand. They do not want to make the patient spiral into a severe depression. The original neuropsychologist who administered the exhaustive tests actually did say that the results indicated mild to moderate Alzheimer's, or the equivalent in some other form of dementia. When we told this to our neurologist, he was horrified, and promptly dropped her from his referrals. He said he would no longer refer his patients to her for testing, because, he said, she seemed 'too cold and clinical', and wasn't sensitive enough. He wants people with more compassion. And in fact, he was right - my DH reacted very, very badly to the report, refused to discuss it, and did fight a deep and frightening depression - and frankly, it wasn't worth it.

You'd think it might help things to have his start to admit what is going on, but, truly, the neurologists have a lot more experience with this, and they are right. [For that reason, you should be very careful about trying to convince others that something is wrong with your spouse. Once they start treating her differently, her prognosis will not be as good. She will pick up on it and become (justifiably) mistrustful, and her cognitive skills may deteriorate more as a result. Things will become obvious soon enough, and then you will want as much normal and supportive interaction with her has possible.] Since that incident, every doctor has shielded my DH from the results of his testing, and have simply talked to me about things. And even with me, they barely mention the possible diagnosis.

It will be interesting to see how the neuropsych handles things with you. Let us know, and also be sure to get a copy of the test results and write-up - that will help you to more fully digest things afterwards.

Teryl · Joined: 26 Jul 2008 Posts: 29

The results we got did say that there was significant decline in executive functioning. His ability to plan, organize and make decisions based on all the facts has been affected. They didn't think his memory was all that bad at this time. Although he needed a couple of trys to remember things, he eventually did. The one thing they did mention, which we have still been ignoring, it that they are concerned about his ability to drive. He tested poorly in the ability to change his response appropriatly when stimulus changed. Kind of hard to explain, but when he was responding correctly to something over and over, in an appropriate way, he had difficulty changing that response when they made a change to what the stimulus was.

I don't know if he was minimizing anything, and I would hope that since he knows we have 2 small children who my DH takes care of, he wouldn't, simply for their safety. Of course, since we are still ignoring the driving concerns, we aren't being very receptive either. I just haven't been able to face that one yet. I don't know how we would manage without him being able to drive. I do let him drive us places every now and then just to see how he does, and so far, I think he is fine. The problem would arise when something unexpected happens, and that hasn't happened yet.

Anyways, I also wanted to let everyone know that DH was approved for SSD. That is a huge relief. I really didn't expect it to happen this fast, especially since we did it without a lawyer.

Rogerstar1 · Joined: 14 Mar 2007 Posts: 541

Congrats on the SSID certification. Be certain they issue you one big check covering each and every month with interest from the date of his initial application.

R.

Stargazer · Joined: 26 Dec 2007 Posts: 295 Location: Eastern Washington

Teryl I almost know how much easier it will be for you knowing another hurdle is over. He has it coming and we know future.

I have a son 48 that needs to apply for his but he still thinks he can work and we seem not to be able to convince him. I do not think he ever will he is a Laryngectomee patient has been free of cancer re-occurence for 1 yr. How ever it is his decision to make but I feel it would be so much easier if he just applied and get it over with.

Take care,
Deeann

coacht · Joined: 15 Oct 2007 Posts: 89

The meeting at the neurologist did not go as i thought it would. I still had not heard back from the neuropsychologist and his office said to talk to the neurologist. My wife had received reports from both the neurologist and neuropsychologist and not told me. It was all a big mess. The neuropsychologist called my cell phone and is going to talk to me tomorrow. He had not done his job. I couldn't talk to him then because my wife was with me. The worst part is that I can't trust her anymore. I have caught her lying several times and that is not something that was part of our relationship in the past. I was disappointed in the neurologist also since he said he just treats the medical aspect. No one seems to treat the whole person or take charage of getting a group to treat the whole person. i guess it is up to me to pull them all together.

She still denies that she has changed and said she could point out my mistakes all day long. I don't feel like I have been functioning well the past two years just from trying to deal with her. Hopefully something tomorrow will come of the talk with the neuropssychologist.

Venting big time.

coach T

sea · Joined: 14 Aug 2008 Posts: 169 Location: New York City

Whooo boy, that all sounds really bad, Coach T.

Try to get a printed report summing up the test results from the neuropsychologist. And... I hope you don't mind if I mention that your wife may be afraid that you'll tell everyone about her cognitive problems. That would be reason enough to hide them from you. She probably knows that you are trying to convince others that something is wrong, so that she will get out of denial. But that is bound to make her feel under seige. This is a very, very scary thing to admit, especially to all friends and family. Hope I'm not out of line. I was just thinking that she might feel better if you were totally on her side, as in maybe even helping her keep her secrets. (Just ignore if I'm totally off base.)

You need a neurologist that will also treat cognitive problems - that IS a 'medical aspect' of this disease! Every neurologist that we've seen will do that, and is happy to have the neuropsych's reports and write prescriptions accordingly.... Strange that yours isn't. Could your DW have convinced him that her cognitive problems are just psychological?

I am really rooting for you to start feeling some support in dealing with this. Good luck with the neurologist tomorrow. I am hoping you get some true insight and peace from talking to him.

What you are going through sounds unbelievably frustrating. And I bet that understates the situation by a lot!

Sea

Teryl · Joined: 26 Jul 2008 Posts: 29

Wow, that does sound so frustrating. I really hope that the neuropsychologist will talk very freely with you and give you the confirmation of your wife's deficits.

I was lucky, in a sense, that it was my DH who started talking about the fact that he doesn't feel as "smart" anymore. He is the one who initiated the entire process of the neuropsych exam. On the other hand, there are times now that I think he uses that as an excuse to not handle things that he really can handle. I just can't tell for certian one way or the other and with 2 kids that are not old enough to take care of themselves, it scares me. Yesterday was the first day of school. My daughter started kindergarten, and if a parent is not at the bus stop at the end of the day, the bus will not drop her off. My DH informed me yesterday that he almost forgot to go to the bus stop to get the kids. Those are the things I worry about. I've even set up alarms on his watch, but he either just disregards them, or doesn't hear them, or does hear them, but forgets too quickly.

Anyways, Coacht, I will be keeping you and your wife in my prayers. It seems that you are struggling so hard right now, and it just doesn't seem fair.

coacht · Joined: 15 Oct 2007 Posts: 89

Thanks Teryl and Sea,

I just talked to the neuropsychologist. There have been all kinds of mixups (and withholding of information by my wife along with a few lies) and now I think that we are on the right track. We are going to go to someone in his department that deals with problems like this. Maybe something will come out of this, otherwise I don't know what will help. The worst problem is that I can't trust her anymore and that had been the strong point of our marriage.

Coach T

coacht · Joined: 15 Oct 2007 Posts: 89

I talked to the office about scheduling cognitive rehabilitation and of course the regular person is out until next week and they are booked up until the last week of October. My wife thinks they are just going to tell us what to expect with the Parkinson's and allay my fears. I talk to them and they say she needs help and rehabilitation. There won't be anything new to report on until then (I HOPE).
Coach T

coacht · Joined: 15 Oct 2007 Posts: 89

there has been a small change in the situationl. The neurologist sent a letter and confirmed all that had been discussed. He also said he agreed with the neuropsychologist that there have been neurocognitive changes in my wife. He sent the same letter to my wife. Now she knows, but we haven't really had a chance to discuss it. She was upset yesterday at the time but seems fine today.

Coach T

sea · Joined: 14 Aug 2008 Posts: 169 Location: New York City

Coach T,

That sounds like good news. Try to also get a copy of the full testing report from the neuropsych, so that you can look at the detailed analysis of each ability, and also see a detailed summary of the situation and suggested treatment.

In our case, my DH never ended up accepting, or even really understanding, the neuropsych's evaluation, and hated her so much for saying anything was wrong, he refused to ever go back to her. At the same time, we had a neurologist who was deeply caring and sensitive, and never told him what was wrong - he hinted it to me, and after a year or two, he made it explicit to me. He was adamant from the start that we should not contribute to making my DH deeply depressed. My DH was struggling with depression, anyway, and the doctor said that knowing of such a diagnosis often makes things much worse. (My DH adored that doctor and still loves to visit him.) And the neuro insisted that the psychologist should never have tried to tell my DH that his memory was degenerating (she said it was moderate Alzheimer's, a diagnosis that was so cold and harsh it made our neurologist refuse to refer any more patients to her.) My DH did manage fairly quickly to put her diagnosis out of his mind, and soon forgot it entirely; he actually started feeling better over time, his depression lifted, and his mood became cheerful. That was years ago. Since then, my DH has been quite aware that his mind is going. (And, as you know, he's been recently diagnosed with Primary progressive aphasia, instead of Alzheimer's.)

From the beginning, I wanted a partner to help me deal with all the overwhelming problems that result from this illness. But that wasn't possible. The cognitive disability was just too undermining to my DH, and today he can barely hold things together to get through a day. But now I also know that I would gladly take a cheerful husband over a depressed one any day. I hope that your wife avoids becoming depressed from the news. From what you say, it sounds like she will be able to maintain her psychological composure (probably by maintaining some denial), which is very good, and will make things easier on you. And while it must be some relief to have your suspicions confirmed, I hope that you can seek out some support in dealing with this, too.

I wish you and your wife a lot of fortitude in dealing with this. Best of luck in getting all the answers you need. This is a tremendous burden on you. I am so sorry you are going through this.

Sea

coacht · Joined: 15 Oct 2007 Posts: 89

I found this article on Neuropsychological examinations and it is excellent. I wish I had read it almost two years ago.

http://emedicine.medscape.com/article/317596-overview

Then here is an article on neurocognitive rehabilitation. I wish I had found this one earlier also.

https://www.neuropsychonline.com/ncrt.pdf

They can be technical so be prepared.

coacht · Joined: 15 Oct 2007 Posts: 89

Hello all,
First neuropsych exam visit. Not exactly what I expected. It was more of a counseling session to deal with the problems that have come up. We have already tried most of the recommended things through marriage counseling. We will see how it goes. Later the same day I found out how she hasn't been keeping things straight for one of our kids taking an online AP class. What a mess. It isn't just her but the school also that assumed much and didn't follow through. Therefore I was totally out of the loop and didn't know any of what was going on. We will be going back later this month and in December. It is going to be a long haul.

Coach T