It struck me today as I was reading some of the posts from some of the people on the forum who actually have HD and their descriptions of how they feel. I'm talking about how many of you say that you feel hazy or not as sharp as before symptoms or tired or not being able to remember things, and how certain meds have helped with these symptoms.

I guess I was just thinking that Ray never expressed any of this to me, and I just wonder why. It was like he started having physical symptoms and some behavioral symptoms, but never really talked about how he was feeling. I know I must have asked . . . he just never really seemed interested in researching about it or advocating for himself for ways to help himself. I think I somewhat always thought that he didn't have a lot of insight into his own symptoms and that may have been the case, but early on, I just wonder if he was realizing that he wasn't as mentally acute or couldn't remember things, etc. He was always somewhat quiet, so maybe that's why . . .or maybe he just figured there wasn't much he could do, I'm not sure.

I remember going to the neurologist and the neurologist would ask him a lot of questions about being depressed or feeling bad (which he'd always answer 'no' to), but I don't remember the neuro asking him about this 'hazy' feeling or memory issues, etc.

I guess I just wanted to comment on how I appreciate so much hearing from each of you on how HD is currently effecting you and how you feel about it and the insight you have into your own problems. I wish Ray could have or would have talked to me more about it, so I knew . . . I always kind of assumed how was feeling, doing and thinking . . .it's just interesting to me, because I just assumed it was part of the disease itself that he didn't talk about it.

Well, so I guess what I'm trying to say is thank you for this whole other perspective that I'm gaining from all of you.

I second that emotion. My husband is like Ray - doesn't say what he is experiencing at all... I imagine he must be feeling the same way...

My husband isn't one to talk much...he doesn't like to complain. Maybe it's a guy thing. But he has said things don't seem quite right like they used to.

My wife didn't say much either. We really didn't want to face it for perhaps the first 5 years after she started showing physical symptoms.

She started getting irradiated and upset, but I thought that was just "her" way of dealing with things.

our neuro said that very often, the person with HD is unaware of their symptoms. In my husband's case, he had no idea WHY he was being let go from job after job, but also did not show much desire to look into it. I now suspect that as a CPA, the errors he was likely making were well out of the "learning curve". He is still not too much into talking about how he is feeling or getting on.

Patty

I wanted to talk to my husband about my symptoms, but he was the one in denial. He couldn't see anything wrong at all with me, while I was noticing every little bit going on in body and mind.

My wife doesn't talk about it either, I have tried to sit down with her and try to get her to explain how she is feeling physically, mentally and emotionally. I know she doesn't notice her movements but she does realize it is harder for her to think than it used to be. She describes it as trying to drive thru pea soup. I also think that she has such a hard time thinking of the right words to say that its to exhausting for her so she just gives up.

I did learn something at the doctor's office. She would ask the general question .. "how are you feeling", or "how are you feeling about things". Teresa would always say "fine", or "no problems". But she would kinda follow up and say "what do you miss doing?".. Teresa would say something like "laundry". So the doctor would say "so miss being able to take care of your family like you used to do?" Then she would say "yes". Sometimes maybe the question is too big or broad. Quite frankly that kind of general question is to big for me most of the time... and "fine" is really my easiest answer too. If they asked.. "Is it stressful to go to the NH?"... i might answer that... and a person can extrapolate whether I am fine or not so fine.



Edited 1 time(s). Last edit at 11/08/2010 12:12PM by Eric.

Thanks Eric that was a good post . db

I agree Eric, most doctor's questions are general and not specific enough. I don't have HD and my physician asks "how are you doing?" and my answer is alwsays fine. She never asks me specific questions.

Hi mjdelcon- my mom was much the same. She was always private about her own 'stuff'to begin with. I occasionally would ask, but she wasn't interested. She often would say that she didn't notice her own chorea but would admit that her walking was no longer straight. She lost a job- and her career was a huge part of her life but appeared to maintain a positive attitude about it. I often wondered what she was thinking or how she was rationalizing how her life was slowly changing and not for the better. She was a very bright woman. Would you believe the first conversation she ever started with me about it was the night we were in the ER (I thought she was dehydrated) and just as we began to talk about it, she went unresponsive and ended up passing away 3 months later after never having recovered fully from the V-fib she suffered (which left her w/severe cognitive deficits). I would die to be able to finish that talk with her. I'm always wondering what she was going to say. I hope the rest of you have (much) better luck.

Carell,
Thank you for sharing your story about your Mom It seems like a lot of people are actually like your Mom and Ray and just don't talk about it, whether it's from not having the insight or maybe something else takes over to protect them from thinking too much about their own difficulties (that's what I hope to think). I know I just want to know sometimes what Ray's thinking too, even now, but with his communication difficulties I think it would be too much stress on him to really be able to articulate it anyway.

There have been a couple times over the past 15 years when I've broken down with him, and started crying and said 'I hate Huntington's Disease, Daddy!" And he has said, with tears in his eyes, "I hate it too," so maybe he does have the insight, but chooses not to go there, because it's too painful. I guess these days, I just have to concentrate on the happy times and the smiles and the laughs, because that's what's really important, the good memories we're making. And I'm so thankful to have these times still.

Thank you again so much! I wish your mom could have finished her conversation with you, and I'm so sorry for her passing and having HD.