Hi all, I used to post here under a different name but some things have happened and so I am here now under a new name to protect my privacy a little bit more. Long story short...I had a child with someone who has HD. We were never married and actually not together very long. I found out that he was gene positive for HD(high 40's CAG) when I was 8 months pregnant. More than two years after he had found out himself. So, lots of anger for that. Anyway, he is taking me to court to get unsupervised visitation of our son. I have insisted on a neuropsych test because I worry that he doesn't have the decision making skills to handle a young child. We go in next week for the results. I want to be as informed as possible before we go in so I can ask smart questions. But I don't really know what to expect. What does a neuropsych test measure? How are the results given? Is it in percentage of disability or what? What would be some good questions to ask the doctor? Can anyone tell me their experiences with this?
Thanks!

I would have him do a memory test also. I'm not real excited about neuro psych tests, they never seem to do testing that are HD appropriate. A lot of our Phd's are really "with it" for testing, but real life experiences is a different story. I would try for supervised visits with an uninterested party court appointed and see how that goes. Pat

Thanks Pat! I get more nervous as the day for results gets closer. I am about to leave to go to his house this morning for a visit. Does housework become a problem too? I hate housework but when I go to his house it looks like no one has swept or vacuumed since before he moved in. I haven't noticed that our son has any allergies so that is not the problem. Maybe his vacuum is broken or something. I know I worry too much but ...well, there have been lots of incidences this summer of parents leaving their kids in a hot car. You don't have to have HD to have a momentary lapse that results in death or disability. Maybe I am just way too paranoid and there would be no problems. I seem to swing between thinking things would be fine and thinking the worst. Maybe the tests will back me up. Or maybe they will blow my worries out of the water. Either way, knowing is better than not knowing.

There is a standard series of tests called the Unified Huntington's Disease Rating Scale. The components are:

1. Motor Assessment
2. Cognitive Assessment
3. Behavioral Assessment
4. Independence Scale
5. Functional Assessment
6. Total Functional Capacity (TFC)

These are usually administered by a neurologist who is familiar with HD.

Will

HD is a subcortical dementia as compared to a cortical dementia like Alzheimer's. Test results can be a problem if the neuropsychiatrist is judging the cognitive ability of the person with Huntington's Disease according to the same criteria as Alzheimer's. For example, I once read an assessment of a young man with JHD (who was quite impaired as judged by people with HD in their families) which said that there was little cognitive impairment since he was verbally fluent. Verbal fluency is not a good indicator for HD progression as it is for AD and neither is the overall IQ score. My ex husband was recently assessed at his nursing home because some of those there had thought he really didn't need to be there because he was so verbally fluent. They thought this because of his discussions on politics. This was during the Republican primary and many of the candidates were well known to him from years before - Gingrich and Santorum especially. What seemed like the comments of someone who was keeping up with the news were really comments repeated from discussions we had had years before. They were shocked when a neuropsychiatrist familiar with HD reported the extent of his serious impairment. So you need to ask whether the neuropsychiatrist is familiar with HD.

Initiative is impaired with HD (it's part of executive function which is seriously affected) so he may well have not vacuumed since he moved in. You know how you feel discouraged about starting a task when there are so many 'but firsts'? I need to vacuum the family room but first I need to get everything picked up and go buy new bags for the vacuum cleaner and where am I going to put that project that's sitting out in the corner? I could put it in the closet in the extra bedroom but that closet has too much stuff in it, I really need to clean it out and get rid of things I don't need anymore...... That's pretty much how people with HD feel at starting tasks. The preparation seems insurmountable.

As for intermittent problems, that's always a concern for me because they do not show up in neuropsych testing. For example, my ex was still doing just fine on neuropsych tests and still working at a complex job BUT occasionally he would forget where he was on the way to the place he had worked for fifteen years. I had warned him that this could happen because someone with HD had talked to me about that experience online in a chatroom. I told him to just pull over and relax for awhile and it would come back to him and he did and it did. Most of the time his memory was fine. But sometimes it wasn't. It seems extraordinary that someone could program a computer and not know a route to work that he had taken literally thousands of times but it can happen with HD.

There is also a problem in cognitive flexibility. We adjust our assessment of situations as more information comes in but it can be hard for people with HD to do that. For example, my ex and I were separated for part of the day when I had to be downstate on business. He had gone with me and planned to read in the car and get lunch at the diner while I was in meetings. I had given him my cell phone and told him that I would call him several times through the day. We even practiced my calling him from our landline the night before and him answering the phone. That day he never answered the phone. I checked on him in person during a break in the meetings and he insisted the phone had never rung. I had him hold the phone and I told him it would ring in just five minutes - on the dot - when I got back to the office so he should be ready to answer it. I called just when I said I would but he didn't answer. Finally on the way home, my mother called and I answered the phone. Oh, he said, was THAT the phone, I thought it was an ice cream truck. The phone didn't sound anything like an ice cream truck but that was what popped in his head the first time I called that day and ever after, he heard 'ice cream truck.' At that point he wasn't working but he was able to read and comprehend what he was reading and order at a diner and pay for his meal and add a tip and did just fine by himself that day. He just couldn't answer the phone. Again, it may seem strange but that's HD.

So I would ask the neuropsychiatrist about the possibility of lapses in memory and judgment and flexibility in thinking and whether executive functioning was properly assessed.

Thank you so much Will! Now I have a bit of a list to take with me to try to make sure the doc did the right tests.

Thank you Marsha! I was with him today and asked him about the tests. He told me it was an IQ test. I said Wow an IQ test that took 8 hours? and he said yes. I told him that I wanted him to have a neuropsych test and not an IQ test. He said Oh it was a neuropsych IQ test. I am so frustrated because I can't have access to his medical records or any other history. I can't even find out if he has a doctors appt. scheduled. No one will tell me anything because we aren't and never were married. Our attorneys have agreed that I can be at the results session because I am the one that insisted that he have it. I really wish I could trust the doctors but I have a really hard time with that. I have heard so many times that the doctor must specialize in HD. I did find one neuro in his town that specialized in movement disorder disease. I called my son's father and told him the name and to please try to see that doctor. He told me a few days later that the doctor wouldn't see him because they don't see people before symptoms begin. What he said to me was that they wouldn't make an appointment for 25 years in the future. I asked why 25 years in the future and he said that was when his symptoms would start.

You guys and this site are such a life saver. I really think I would be in a deep depression and unable to cope with this if it weren't for all of you who read and/or post. I can't tell you how much this means to me. the only reason I even knew what HD was...was from the TV show House and one of the characters possibly had HD.

marsha your post was so helpful . i just wanted to say thank you . it just amazes me everyday how the brain works your just so clear you make it easy for me to understand why my husband can book a trip but cant understand when i told him to put his ticket in the pencil case because when i gave it to him first i told him it was for his camera and money .. he never did put the ticket in it he carried the ticket. theres so many more examples i just have to watch everything i say and do if i want a peaceful day for him and the family which we dont get many of
im sorory i cant help with the testing . just be strong and fight for what you think is best for you and your child . do not let the doctors intimitate you ask questions and have them repeat anything you dont understand and bring pen and paper keep a notebook of everything the lawyer and doctors tell you write dates and even on visits write down how the father acts. ill stop going on and on about stuff you prob already are doing
good luck to you
jen

Thanks Jen! As the day gets closer I get more worried. My son's father is working and caring for himself and seems to be fine. I just notice how rigid he is in his body and his mind. I worry that if this assessment comes out in his favor that the court will believe he is fine and let him have unsupervised overnight visits. As far as I know, he has never been around children this young on his own. I guess as a man in general he wouldn't have that much experience. What I worry about is that if my son becomes totally unreasonable, you know, total three year old tantrum and his father will melt down too. And no matter how much I try to talk to him, to explain my fears and ask for him to help me understand, he just won't. Recently he told his lawyer that he came to my house and I was having strange men over to visit. The reality is that man he saw works for me. My employee introduced himself and said "and what is your name again?" and my son's father said "I'm the dad, that is all you need to know." Which struck me as totally bizarre. My son's father has a master's degree and is (or was) bilingual and was also in the peace corps and the military. And now he works at a job that any high school grad could get. But he works there because they are "pro-military". That is another thing that worries me...he is very hung up on having been in the service and always wears something that proclaims his status as a war vet. I understand being proud of your service but it seems a little over the line to me.

Anyway, please keep me in your thoughts and keep the positive thoughts going that I will be comfortable with whatever the outcome.

On my way to hear the results of the neuropsych test. so nervous.

Nervous for you! Please keep us posted.

OK we went and saw the doctor for the test results. First thing, the doc has seen "a few" cases of HD in her 30 year career. Second, she has never heard of the Unified Huntington's Disease Rating Scale.She tested him on the IQ test. He got a 92 which she says is average but I feel like it is less than it used to be. She also did a memory test which he did pretty well on. And so on. Two tests that did show a marked decline from average were the attention component of the test where he scored an "impaired" score and a word fluency test. The average on that is a 10 and he got a 4. His MMPI test showed completely normal. I see now that these tests didn't measure the things that worry me about him. But we can now go forward and go to mediation and hopefully get some sort of arrangement worked out. His stepmother and I agree that he does not EVER need to be alone with our son. I hope that this will at least give a baseline that he can be measured against in the future. The neurologist he sees has diagnosed him with "mild" symptoms of HD. He just has some lower trunk movement and not really bad. So fingers crossed for Sept 12. That day we go to mediation and I hope we can came to an arrangement that he is happy with and one that I feel safe with.



Edited 1 time(s). Last edit at 08/29/2012 11:02PM by FevreDream.