Hi all,

I don't really know if R is in the early or middle stages. I feel like he is obviously impaired. I feel like if I met him on the street and had a conversation with him I would walk away thinking "that guy is messed up". But his best friend that has known him since high school says R is fine, maybe 98% rather than 100%. His stepmother (who cared for his father for 13 years until his death from complications related to HD) sometimes seems to agree with me and other times seems to think everything is fine. Other than his friend R has no one around that cares about him that he trusts. Because of our son and R asking for unsupervised visits with him, I have requested that R have a neuropsych exam to find out where he is in his ability to take care of J (age 3 1/2). R has rescheduled the test 4 times since June and insists on calling it an IQ test. I can understand that he is worried about the test and afraid of the results (he has already tested positive for the gene with CAG of 48). Richard is 38.

Ok, I guess what I am asking is how obvious are the mental difficulties of an HD person? Is it obvious to everyone, only strangers, only people who are close to them? I know many of you are on the front lines in dealing with HD personally or caring for your loved onewith HD, caring for the rest of your family, What are your experiences? When did you first notice that something wasn't right? Was it movement or mental?

Thanks for your help.



Edited 1 time(s). Last edit at 08/15/2012 03:20PM by salamandah.

Make sure that the neurologist who gives the test is very well versed in the problems associated with HD.
Judgement and perception of dangerous situations can be impaired and lead to slowed and poor problem solving techniques.
The need to anticipate safety issues associated with children, quickly warn then and protect them in a safe setting is obviously really important.
Sounds as if he has put it off four times and calls it IQ, he isn't quite sure of the importance of the test. That to me is a red flag. He is already not making some good judgements. Problems wth judgement can be very tricky and not so obvious. He probably honestly thinks he has good judgement. That is what makes it all so difficult.

Thanks Bridie! I start to doubt myself. No one that has known him for his whole life can bear to admit there is a problem. I am afraid that I am forcing them all to see that he does have a problem. I am keeping my fingers crossed that he doesn't reschedule this appointment that is coming up on the 13th. He really doesn't want me to have anything to do with his doctor visits. Because he is taking me to court trying to get unsupervised visits and because my only objection to unsupervised visits is that I don't think he can handle it...our lawyers have agreed that I can be present at the results of the neuropsych tests. I don't even know what to expect from that. I just hope that the doctor can explain to him that taking care of a three year old is much different than taking care of a pet. R will not listen to me and I find it so frustrating. I want to work with him so he can spend time with J. But he makes me so mad with his stubbornness and his refusal to understand my fears. I realize that this refusal and denial is probably organic. But that doesn't make it any less frustrating.



Edited 1 time(s). Last edit at 08/15/2012 03:21PM by salamandah.