I am devastated. Here is my story:
I divorced Mark 2 years ago because of his personality changes, extreme mood swings, anxiety, compulsive behavior. I have had experience with Huntington's because my widowed father married a woman with 2 adult children with HD. I have watched them get worse over years. I also work in Hospice and have been with HD patients during the awful end stages.
For some reason, denial I guess, I didn't realize Mark has had symptoms starting early in our 20 year marriage. I started sleeping in a different bed because Mark's legs moved at night, sometimes he would scream out in his sleep etc. He has had a twitch in his shoulder for years and this became worse with stress and i thought it was anxiety. Now, he is unable to sit still at all. He has been falling and the memory problems are awful. He just lost his job so now will be living on only the alimony I pay him.
We have 3 teenagers together and he has 2 other adult children from his first marriage a they have 3 children. We can't really pinpoint the family history. Mark's dad died at 62 from a heart attack. I asked Mark if he was fidgety and Mark said he remembered that he was. Years ago, Mark's mom told me that she also had trouble sleeping with her husband because of his leg movements. I think Mark's sister has HD. She has memory problems, anxiety, inability to make a decision and trouble finishing sentances and is very slow to respond to questions. She fidgets a bit but the other symptoms are more problematic.
I have been able to hold it together while I am home with the kids but the rest of the time, I just can't seem to quit crying. It is a nightmare. We are waiting for the HD test to come back in 2 weeks. I pray that I am just over reacting and that it will be negative but in my heart i know it is HD.
I am a physician and talked to the movement disorder specialist after he saw Mark 2 days ago. I could just tell in his voice that he was fairly certain and the test is just to confirm.
How can I cope with the odds that one of my 3 beautiful, smart children will die of this disease too. How will this potential diagnosis affect their lives. When is the right time to get tested?
Thank you to whoever is reading this. I appreciate being able to connect with others who understand.
Jackie

I can relate to you as I was also blindsided by HD. My wife was adopted and nothing was known about her birth family. After my daughter was born, my wife started acting strangely. Four years later she was diagnosed with HD. Seven years later she was dead at age 33. My daughter was diagnosed at age 19 while in college. By her junior year she was very symptomatic. Her CAG was 60. She went on to graduate magna cum laude. Dealing with my wife's illness was devastating. Coping with my daughter's was worse. I was an attorney and businessman and decided to give it up to care for my daughter. We sold everything and moved to Georgia near my inlaws who had retired there. Allison's behavior got so bad down there that after a year I decided to sell my house and move back north to place her in a nursing home that specialized in HD. That nursing home was sold to a chain and soon started to go downhill. Allison's temperament improved to the point that two years ago I took her back home to live. We had the assistance of a visiting nurse agency until one of their nurses decided to attack us because she couldn't fathom a male caring for his daughter. (The details are long and exasperating. Check my posts here if you're interested.)

We have never been in denial about HD. We choose to face it head on. We've done clinical trials, TBZ, a stomach tube, fundraisers, support groups, this forum, Arlo Guthrie, interviews,etc. Because we are so vocal we are also alone. People don't like HD. They usually run as fast and as far as they can. They just don't understand it. We tried going to a little church down the road. One gentleman told me he understood as he had a retarded brother. Another lady introduced us to a special ed teacher who she said would understand Allison. Allison's IQ is 149! We didn't go back there.

Huntington's lacks a celebrity. It also lacks a leader. The HDSA has done nothing to educate people about HD. Absolutely nothing. In fact I'm not at all sure what they do do. Having parties is all that I can see.

You will continue to hold it together for your kids. That's what we parents do. Time alone when you think is the worse. After 30 years of this it hasn't gotten better. Yet I am one strong person so it hasn't killed me either. Your family onset seems late enough that hopefully something will happen before your kids might be afflicted. Unfortunately I felt the same about my daughter and it is not going to happen. All you can do is support them, care for them, and instill them with a spirit to keep fighting. Allison still does remarkably well for someone with 14 years of JHD. She is very much with it and enjoys her life. We get out almost every day and appreciate every minute we have together.

You ask when is the best time to be tested? My opinion is at the first legal opportunity. Not knowing is not going to make life better and could very well lead to some poor decisions. Many many people here will not agree with me on this one, but I've never been one to postpone the inevitable or not face reality.

Best wishes to you,
Howard

Thank you so much for reading and responding to my post. Being able to "talk" to others in this situation is so helpful.
I am coping a little better now. On Friday, the day after I realized what we are dealing with, I broke down in tears at work and had to go home. For me, a hospice physician who is supposed to compartmentalize well, this is very unusual behavior. I think I can go back to work tomorrow.

There are so many questions now and you seem to know so much. How will Mark's CAG number tell me about our children's possible onset. Or, do I need to know if they are positive and what their numbers are? I think Mark's symptoms started in his late 30s.

I feel guilty having divorced Mark for what was probably symptoms of HD. One big issue for us was his compulsive and addictive use of internet porn. I see that this may be related to HD as well.

I don't know who will take care of my ex-husband. I don't think I can do it but feel some obligation as well. He is really alone in the world as a result of his personality changes etc. I hate to see it fall to my kids as they are young and deserve to go out and live their lives.

Thanks again for listening and any resources you can direct me to for the psychiatric component of this disease would be great.
Jackie

Jackie,
I feel so connected to your story. Mine is very similar. I had married a Dr. and we had three beautiful children. He got so bad during his thirties, he start drinking HEAVILY.....he mostly had behavior problems not movements. I had to divorce him and raise my kids alone..........it was tough because I didn't know at all about HD in his family. His Dad died in 1992 and he thought they said it was HD, but I put it out of my mind (denial???) then my ex died suddenly of a heart attack in his sleep at age 54..........we were so sad as a family. Time went on, my children grew and had families, except for my son, who is 38 and the oldest....For the past 8 years he has gone from a total sweetheart to a bi-polar hard drinking alcoholic............Since I was in the pharmaceutical industry, I saw signs I didn't like. I also saw them in his sister, my daughter..........she has 4 beautiful children...........my grandchildren whom I adore. Well, long story short, they were both tested early 2013 and each is positive with same CAG of 45. My son lives with me, which is challenging to say the least and my son in law helps my daughter, to some extent.
I find the only way to live with this is take it easy and live one day at a time............and go on vacation, if you can. I just got back from Hawaii, and the whole experience did wonders for me, even if temporary...........I feel for you, and pray they are negative.
Janet

Thank you Janet. Your story is so similiar to the other part of my family with HD. My mother died about 10 years ago. My father remarried the widow of a physician. The physician developed HD and shot himself when he could no longer practice and their kids were in their 20s. At the time my Dad remarried their mother, both of the children were symptomatic. I kind of lost my father as he became so involved in caring for his step children and didn't have much time for us. I can't imagine how he feels now that my children may be facing the same fate. He has been pretty "matter of fact", told me to get my ex-husband into a "center for excellence" etc. I know my Dad is feeling emotion, he just doesn't know how to show it. Anyway, we have been planning to go to see them for Thanksgiving. They live out of state. Their daughter with HD will be at the house for thanksgiving. She is in a nursing home at age 40. I want to believe I can maintain my composure as my children don't know yet about thier father. However, they have had plenty of experience with HD from these non-blood relatives.
Another interesting parallel with your story. One year ago this week, my ex-husband had a heart attack followed by open heart surgery. He was 57. His Dad who most likely had HD, died of a heart attack at 62. I have read that heart failure can be related to HD but not that coronary artery disease is. It makes you wonder. I am embarrassed to say that there is even a part of me that wonders whether the aggressive treatment of his heart disease at the time was the right thing to do as now he faces a very difficult end of life. This just may be me being selfish.
Thanks for responding. I am in that stage where all I can think about is this devastation to my family and this board is a lifesaver.
Jackie

Jackie, my heart goes out to you and your family. Like you we had no idea HD was in my husband's family as his father died from what we believe was a heart attack in his 50's. We don't know if he had been diagnosed with HD prior to that. My husband did not see his father again after his parents divorced when he was a young boy. It was quite a shock to find out the man I married that was so vibrant and healthy had HD. Eventually the sorrow and anger lessened as his care needs increased, and I finally came to terms with my new role in his life as a caregiver. I fear for the fate of my two children, one a college graduate, and the other one still in school. My eldest wants to be tested, my youngest does not want to at this time.
I've read the Physicians Guide to HD cover to cover, and reference it often when I see new symptoms develop. I think you can order a hard copy off of the HDSA website, and you can download as well. The webcasts and "lunch and learn" session are also very helpful on that same website. Knowledge is power, and it definitely gave me a clear picture of what my future would be like. It's been 5 years since his diagnosis, with good and bad days. More bad days the first 3-4 years as we struggled to find a combination of meds to reduce the psychological symptoms, and it took time for us to learn what triggers caused him to get agitated and out of control.
Sometimes the lonliness is overwhelming. I have wonderful parents and a few close and very dear friends I can reach out to, but what I miss is the love and companionship of my husband. Like you there are times when I think that him having a heart attack would be a blessing for him. I don't think it's selfish. Nobody wants to see the person they loved go through years of cognitive and physical decline and often deep psychological issues. Even for myself, I would much rather die a quick death from being hit by a bus or massive heart attack, than years of what I've seen my husband go through.
Djc

Jackie,
I'm so sorry what your are going through...My dad has HD and I'm 38 and am "at-risk". You mentioned in your post about when is the right time for your kids to be tested...speaking as an at risk person, that is completely up to them, you sound like a loving, supportive mom, and honestly that's all you can do. I don't really have any symptoms, although if I "symptom hunt" I'm sure I can find a few. I don't know when I will test, I do know I will before my kids decide to marry, have children etc. I want them to have that choice, I didn't...But I will say knowing all that I know, I'm still glad they are here. I also hold no guilt towards my dad. I'm glad to be alive and have been blessed by the life I've had so far. This disease does stink! It's terrible, not going to sugar coat it, but there is hope and life can still be good. I wish you the best and know that you and your children are not alone in going through this disease....I will be praying for you all.