Hello all.

My anxiety with facing my husband's disease ebbs and flows. When I am at my worst, I spend most of the day perusing websites looking for answers, reading horrible stories and making my anxiety worse. On better days, I enjoy each day as it comes and take the happiness I have today. On bad days, I dwell on what we won't have....retirement, vacations, our children's weddings...with my husband healthy--if at all. On good days I think about what we can do now. On bad days, I watch each movement and hear a death knell with each one. On good days we laugh about what might and might not be. On bad days, I love my family so much it hurts. On good days I love my family so much it doesn't.

KLivin,

The way you are feeling, it's understandable and normal. There are definitely ups and downs. I guess what I would work towards is staying in the moment and making more good days happen than bad. The horrible stories you may read do not necessarily reflect what your hubby's disease process will be. Try to limit those stories and focus on more positive ones, for instance check out Barb's recent post about what she's doing in her life, living with HD in a very proactive and powerful way. She and many others are living life to the max and doing it well. Don't forget to take care of yourself as you make this journey, do something nice just for you.

Take it easy,

Carla

Thanks Carla for your wonderful words. I do try but some days its a struggle.

Hi -
Your words touched me very much and made me think once again how much I appreciate this forum - you could get that off your chest and I could benefit from knowing that others out there are going through just what I am. Good days and bad days... it is the human condition...

Hi How long have you known that your husband has HD. It was very concerning and scary when we learned his father (whom) he never even met until Steve was 24, had this horrible disease and Steve had a 50 % chance of getting it. We found out his father had it about 12 yrs ago. Steve, sadly, got the test and found out 6yrs ago. There were signs present that veered to from the normal, but we prayed it wouldn't happen. It did. Now his personality has changed. He is apathetic, angry, irrational at times, we split 2 yrs ago because his aggression and hostility was getting worse. I so wanted him to get help and heal our family. He felt everything was my fault and he wanted to be single again. He decided he wanted the freedom. He never really waivered much on that thinking. He left God behind, became more apathetic, I moved out of state with our girls. His actions before we parted and since feels like someone punched my guts out and I feel it every day. I feel the pain and sorrows in watching my 4 girls pain. Steve can be so apathetic now, and so cold and icy towards me. He has little family to speak of.....but then he is in denial of having the disease now, therefore he is not too concerned about who will care for him. He is making lousy choices. What's HD, what's him....the two are getting blurred. I just feel so much pain still. Our family will never be the same and I am angry about that. I wanted life to be perfect for our adopted girls. Now they have to suffer. I'm angry Steve didn't or couldn't make better choices and meds could have helped his changed personality....

My husband was diagnosed @ 1.5 years ago but he started feeling like he had it probably @ 6-7 years ago. We found out his dad had it before we were married but I/we were idiots... I really feel that way... or just in denial - everything was perfect and no reality was going to get in the way. His dad showed symptoms late in life and his disease progressed very very slowly. no one talked at all about "what if" any of his 4 kids had it... My husband had a very hard time watching his dad deteriorate (his dad was one of 3 4-star chief's in the NYPD - rose to the very top of the force - larger than life) but my husband keeps it all inside and turned to alcohol. So we had a very rough patch where he was drinking too much which is the worst thing he could have been doing for his health. By then we had 2 small children and I was ready to leave because of the drinking. HD was always looming and as time passed he became convinced he had it. He got his drinking under control, we had him tested and here we are... I feel like I didn't even have him the last few years because of the drinking. I read about couples that find out they are at risk and come together to plan, get insurance, take care of things while they still can. I fee l that he just abandoned me because he couldn't cope and I am angry at him for that. now he's sick...

Hope2:

wow. Very similar stories we have. My husband has struggled with addiction most of his life. We had been separated due to his use and due to his hard work at sobriety we have reconciled. Things are much better between us these days but it is work. His dad too was an NYPD (not high ranking...lol) and left the force early because of the HD, even though he did know or was diagnosed for another 11 years! He just couldn't do it any more...e bounced around from job to job after that and put my MIL into 58,000 worth of debt. My MIL had no idea either and for 10 years they struggled with his behaviors until his mother (my husband's grandmother) was taken to a neurologist for her falling etc... They were both diagnosed at the same time. Things got better for him after he was diagnosed. for the next few years until at about 59 when my MIL had to place him ina nursing home. He died there at 61 from a pneumonia. Nobody in his family wanted to deal with it either..I was the one who got him to Columbia and did the research. Now fast foward....two of my SIL's are positive and symptommatic. They have three children between them. One husband is completely in denial, and is not helpful to my SIL at all. The other one's BF is more helpful. My husband was the one to get them both to Columiba and they are finally on meds and doing better. They struggled ofr two years without care. My other SIL who lives in FL is planning to relocate here to help. Now everyone has to deal with it. My next phase will be telling my 16 year old. We are working towards that goal with the SW @ Columbia and her mother. This is not an easy road but it is a much different road than it was for his parents.

Wow Klivin - many similarities... does the social worker you are working with have the initials DT by any chance? We are also in the process of figuring out how to tell our kids. They are still young (9 & 6) but I want to open that door. My daughter definitely has a "thing" with her dad.. there relationship is not what I hoped it would be although it used to be wonderful. I think that conversation at 16 will be a challenge but I think you are doing the right thing - it is necessary and I am sure the SW will be able to help it go smoothly. There is a lot of literature about it - there is a book that is supposed to be very good - I bet you can find it on this forum somewhere...

I also feel that it won't be the same road as the previous generation. The knowledge of meds, the new meds coming out... we have to be grateful for any help we can get!!

Hope2:

yes it is DT!!! I see you go there as well. She is wonderful and we recently had a very long talk about it. The team there has been great with us. Where are you guys located?? We are on Long Island.

We are in Southern Westchester (my husband is from Long Island). We went to Columbia a couple of times - I spoke with DT many times before my husband was diagnosed and she was very helpful. My husband was diagnosed there. I was not happy with my last couple of interactions with them so we have found other docs for my husband but I know that they help many people and I am sure they are a great resource. They certainly have many years of experience - they were wonderful for my father-in-law too.

My husband is symptomatic and also in denial. He was diagnosed two years ago, but lookiing back the symptoms began appearing maybe 9 years ago. His personality and behavior are changing and I often wonder, "What's the HD and what's 'him'? And, now, I realize it really doesn't make any difference because "him" is a person with HD - there is no separation. I know that the disease manifests itself in so many different ways among individuals, but I'd like to know whether anyone has experienced the following manifestations:

1. After running a stop sign (yes, he's still driving), he was pulled over by a police officer & given a ticket. The officer was a bit overbearing, but not out-of-line, and as he was telling my husband he'd have to appear in court, my husband refused to look at him, stared straight ahead with no expression on his face, and appeared to have "checked out". The officer repeatedly asked him, "Do you understand?" and my husband stared straight ahead, refused to answer. I could see the copy was approaching the end of his rope and, so, I prompted my husband to say, "Yes, I understand". So, he repeated that. The cop relented. I've heard of people trying to talk their way out of a ticket, but this behavior seemed totally weird.
2. My husband was straightening up and moving some things out of a room here at home. I saw that he had my exercise mat in his hand and I asked him to just leave it in the room. He appeared startled (I didn't yell or anything) and dropped the mat right where he was standing as if it were on fire. And walked off.
3. Never a social butterfly, my husband can spend an entire day without initiating a single conversation, sometimes not responding to anything I say or engaging with anyone. Yet, he doesn't seem angry or upset about anything. Just missing.

Anyone experiencing anything similar?