My husband went to the COE to see the psychiatrist today to get some paperwork filled out for the educational program he would like to pursue. Going to the COE always makes him nervous, and I go when I can...I unfortunately couldn't today as it was a last minute appt, and I have a federal audit at work coming up. I spoke to him after his appointment and he said "everything's good--Dr. said I'm good" but he just sounded....well, off. I spoke with him a few more times and kept asking him what's wrong (he often takes a few times..) finally he said that there was a young woman in the office, 18 with symptoms. Her dad started showing symptoms at 35. I knew immediately that he was thinking of my daughter, 16 and himself 40. It was the first time that he has really acknowledged the possibility of their disease. It was heartbreaking. I am usually the only who worries about everything. In a way it was good for me as I was able to say "we need to take it day to day" like he does me. It was a very hard day and I am very sorry I wasn't there with him

I feel your pain. it is the hardest part of the disease for us... just have to have hope that IF they have it it'll be way down the road help will be available. I have to believe that because it is too hard to think about it any other way.

Oh gosh, i understand. Most times when i go in to my clinic, i didn't see other patients in the waiting room at the same time as me. And so the first time i saw a couple of people that were further along than me, it was unnerving for me, because i had never seen hd. My dad became symptomatic after me, and so i never grew up with it. But when i went to the Reacdh for the Summit, and the World Congress, it really helped me to see swo many people with hd, i became not scared to see it any more. But the heartbreaking time was when i went in to the clinic, and there was a little girl there, about 12 years old, and she was very symptomatic, she was such a sweet little girl, but it was very heartbreaking to see, but was so nice, because she was very happy-go-lucky, and she gave all her doctors hugs Was so sweet But you know, so many people with hd can be in denial, of themselves and others, and so, even though it's sad what your husband is feeling, in a way it's a good thing, it shows you that he is aware, and feels compassion, and feels scared like you must too, and you guys are able to talk about it now. I'm glad he finally told you what was on his mind

Hope2 hit the nail on the head. We have 2 kids, ages 8 and 9. It's very hard not to look at every trip and fall or angry outburst and not think, oh no, tell me this isn't the HD. I just have to push that out of my head and enjoy their lives and my husband's life while he is able to enjoy it with us. He is starting to also realize his progression, and as saddened by the possibility of his future. We just have to take it day by day and enjoy what we can't. If they have it, they have it. Any more worrying on my part won't change that outcome. It is VERY hard at times. I say a little prayer for strength when I start feeling that way. For me, that works.

Patty

I can understand why the visit would upset anyone.

I remember when I took my wife to the COE in Alabama. It was the first, and only time, either of us had seen so many people with HD in one place. My wife's symptoms were advancing, but not as far as those around us. There were at least 15 different patients in that waiting room in the time we were there.

It upset her a lot, a whole lot. She didn't like that at all. And I didn't either. There were children with JHD, and the age range all around after that. It scared her because she could see what was coming.

We only went the one time. The doctor was giving us a second opinion, and at the appointment he gave full blessing to the Neuro we were seeing locally. The doctor gave us both some advice, and that was the end of the visit.

Wow Fred, 15 patients? They must have a ton of docts at that ceo, or maybe they're very short appointments. I've been going to my clinic for 7 years now, once a year for a yearly, and 6 months later for follow up. Everyone is booked a one hour appt with their neuro, and a one hour appt with the hd psychiatrist. So in 7 years, i've only seen other patients in the waiting room maybe 3 or 4 times at the most. There is also a great respect at our clincic for the doctor's time, and the patient's time, never have i had to wait more than 5 mins for my doctor to call me in.



Edited 1 time(s). Last edit at 07/09/2011 09:25PM by Barb.

There was a lot of people there. It was at the University of Alabama, and we were there for a long appointment. The waiting room was full, before and after our appointment. There were several doctors there seeing a bunch of patients. I will never forget seeing the JHD patients. Never.

My husband is at risk. His parents knew there was a history of it in the family but he says he would not be here if they had not made the decision to have children. I am for PGD and CVS don't get me wrong but some people are not always fortunate to have been in a position to consider those options before having children. I have been reading and I am hopeful there will be a cure soon....let's just hope