DB: I understand, but you always have to be on top of matters, whether insurance or any other issues when taking care of someone with HD. I have spent a lot of time reseaching all possible benefits, and whereas most people wouldn't think they are out there, they are. You just have to persist and always be looking. I guess we just were fortunate and found a good insurance company, got good aby Stephen - Huntington's Disease Support Center
DB: When we applied for my wife's insurance, I considered all those factors, but concluded to risk just being honest upfront. Yes, companies are huge, and had we not revealed the disease, it would have come out sooner or later upon her death (coroner, dr, etc.), and they would have ample right to deny honoring the insurance. Sometimes, you have to not offer info, but sometimes being upfront doesby Stephen - Huntington's Disease Support Center
Right Fred! That's the exact reason our insurance granted my wife insurance, because even the neurologist could not tell them she had less than that magic number of 5 years to live. Still, I will ask our agent if he were to write a policy on a family member who had chosen not to be tested, if there would be an issue. My guess is they would write it, possibly use the 2 year wait, and the higherby Stephen - Huntington's Disease Support Center
Laura, as you mentioned there have been many threads regarding all types of insurance. In our case, we had no problem obtaining insurance even way after onset, but there was a 2 year wait period before full effect. You mention an interesting situation, involving children or others who have HD in their families and have decided for one reason or another not to be tested. All I can say, is tby Stephen - Huntington's Disease Support Center
Edwina, I'm not sure if your talking about life insurance, or what. Our insurance compnay had no problem signing my wife up for life insurance, after checking with their home office. It appears that unless the person has less than 2 years to live, they can write a policy. The only glitch was a 2 year waiting period. Once diagnosed with HD, it was on to disability (which we got with the help ofby Stephen - Huntington's Disease Support Center
The supplements you listed are what my wife is taking. However, she does have HD, and is now 5 years into it. Our neurologist has no official position on supplements, but told us that there's no harm in taking them if it helps her either from an emotional standpoint, or having an actual impact. You are in a unique situation over this, as you say you're not ready to be tested. My guess is fby Stephen - Huntington's Disease Support Center
Thanks, Dusty. JL, I understand your point, but if a person doesn't attempt to correct hurtful words, then it reamins. In the case I mentioned, the father could have gone back and apologized, and I'm sure they would have forgiven. He did not, and continues to bring it up.by Stephen - Huntington's Disease Support Center
The above suggestions and advice are excellent, and I'm sure you will find a solution. Now you must focus on your own situation, being at risk. Again, it's your choice as to being tested or not, and everyone will respect whichever way you go. It may be too much to handle that as well as the issues with your dad at the same time, but please know that we haven't forgotten your situation, as well asby Stephen - Huntington's Disease Support Center
Yes, SteveI, that father does have issuesof his own, and that's entirely what made it possible for him to make the cruel remarks he did to his sons, in front of them. Well figured out! Whether it's HD, or anything else that may have an effect on an offspring, you have to be careful, and consider the consequences of your words, even if they are said out of emotion. Words hurt, and can't be takeby Stephen - Huntington's Disease Support Center
Draw upon what you were before this disease. My wife knew for 10 years that she had tested positive for the disease, yet continued to be strong, and do well in life. She was determined not to let this defeat her, nor worry her. Even now, 5 years since onset, she should be depressed, sad, wanting to die, and all that you experience. But she doesn't, and that's a rare personality! A testament to heby Stephen - Huntington's Disease Support Center
Yeah, I saw Air Force One fly over on it's approach to South bend, and also watched the speech. Obama really had no choice but to address the issues he did, as they were addressed quite well by the speaker who introduced him. I thought that was neat.by Stephen - Huntington's Disease Support Center
JL. perhaps I didn't make my point clear. Sorry. The father just didn't make that remark, but made it in front of his two sons. That's saying he wishes he never wished he's had them. When one of the sons now just had babies, more cruel remarks.Again, sorry if I didn't make my original point clear, but to say such things in front of his own kids, is cruel (in my opinion anyway), Words hurt!by Stephen - Huntington's Disease Support Center
Yes, JL. it was about 5 months, but that was 5 years ago, and I hear horror stories of people waiting much longer. I not only got the neuroligist involved, but our local congressman did an outstanding job of getting her disability first time. Most are denied first try, and have to apply again, and so on. I only hear that people applying for disability have a long wait these days, but some mayby Stephen - Huntington's Disease Support Center
Thanks Fred, and I completely agree! People have very strong emotions on this subject. My wife's sister had 2 boys before she died from HD, but she didn't know about HD testing back then. As for one of her now grown boys having twin baby boys (and not being tested), his father (my wife's sister's husband) made the cruel remark that had he knew his wife had HD, he'd never have brough his kids intoby Stephen - Huntington's Disease Support Center
LP, I know you are talking about disability insurance. Here in Indiana, it's extermely expensive, even for a healthy person unless they get it at a very young age. For what it's worth, and for those who are wondering about regular life insurance, I was able to get it through our agent for Brenda. I was honest and upfront, told him of the disease, and after he consulted with the main company, tby Stephen - Huntington's Disease Support Center
Although I don't understand why a person would choose or not choose to be tested, I guess as a caregiver I'm not in a position to understand. If I were at risk, I think both decisions, either way, would be nerve wracking! I'd go crazy not knowing, and go crazy if I found out I was positive. Each is their own. An interesting fact to consider. My wife's sister, who also died of HD. did have 2 soby Stephen - Huntington's Disease Support Center
Hi Kathy; Although my wife's chorea or movements aren't quite as bad as others, I have found that situations surrounding her can be an important factor, in triggering movements. We have medications for chorea, but unless I give them to her at the first sign of an episode, they don't always work. Something as simple as a hospice visit, can be overwhelming for her and trigger movements. So, I noby Stephen - Huntington's Disease Support Center
Welcome Joe! Your wife's moods remind me of what my wife was like during her onset of HD. After you get her retested, and begin care under a neurologist, you'll find there are much better meds for HD that will help her moods. Our neurologist has found the right ones that manage both her moods, and chorea, but your neurologist may find a completely different set of meds. Each HD situation is diffeby Stephen - Huntington's Disease Support Center
Decisions are just as complicated beforehand, as they are often afterwards in dealing with something. I didn't know my wife yet when she had lost both her father and sister to HD, but she did tell me a lot about the way she handled it, and reacted. Brenda was mad that HD had appeared so much in her family, and it was quite a while before she even decided to get tested. When she did get tested,by Stephen - Huntington's Disease Support Center
I think Dave has a valid point. Life is precious. Nobody can say you're wrong, no matter what your decision is, but a life is precious no matter what disease or misfortune comes upon the child. There are valid points also about the emotional toll, and physical, in taking care of an HD person. I certainly know that first hand. However I would never regret having married my wife, and I know sheby Stephen - Huntington's Disease Support Center
I agree with FranJ. I've already posted my opinion earlier, but here's one more peice of information. My wife's father and sister have both since passed away from HD. But my wife's sister had 2 children, and they are now in their 20's. Both have chosen not to be tested. One, just had twins with his wife. Although I don't exactly know why or why not anyone might choose to be tested, the facby Stephen - Huntington's Disease Support Center
I'm not sure my opinions will be of help to you, but here goes. My wife had already tested positive, and we knew onset would happen before we got married. That aside, as far as children are concerned, we talked about having children (although it was unlikely and unrealistic at our age). Yes, having a child immediately gave him or her a 50/50 chance of carrying the gene, plus there would be the obby Stephen - Huntington's Disease Support Center
Yes, you have to go by what works, and over time. This website is a blessing, as obviously many can relate to one another either as caregivers or patients. As a caregiver, it is difficult to watch, and worry about increasing or changing meds. But take comfort in knowing that neurologists know so much more than they used to, and we have a better shot at easing this disease somewhat. It's a hugeby Stephen - Huntington's Disease Support Center
Marg: Yes, but Risperdone as a bipolar drug, does work for HD. I understand that it does directly have an effect on Chorea, but in our case, the mood swings and mental states have been most dealt with using Risperdone. A few years ago, our neurologist tried an experiemnt and cut way back on the risperdone, but kept the meds for chorea. My wife soon became out of control. So, as I certainly doby Stephen - Huntington's Disease Support Center
Bonnie; Although a posting was started recently on this med when the FDA approved it, I can only tell you that our neurologist has decided not to pursue it. Then again, as it is for chorea, my wife's chorea is not that bad and the meds we have for it work fine for now. I have heard various people make the assumption that tetrabenazine replaces risperdone, which it does not. In fact, I recall rby Stephen - Huntington's Disease Support Center
Thanks, BJ. You know exactly what I mean, and likewise, I'm sure you will work things out too. Thanks for sharing your experience.by Stephen - Huntington's Disease Support Center
Well, Labor Day is over, and looks like fall is coming! Here in Northern Indiana, some leaves are already turning color, and after a week of hot and humid conditions, this weekend has brought cool temps and some earlier rain! They are calling for temps to drop into the 40's tuesday night! And talk about it getting longer for daylight, what a change lately! May everyone have a great ending to sby Stephen - Huntington's Disease Support Center
Thanks Dave, and this will take care of itself. As I said, it's not a problem, and every aspect of this is well understood. We need to keep in mind that every HD person is different, and only those within the circumstances can truly know all the facts. I didn't intend to start anything major as far as a thread. I simply was curious as to how others may have experienced it. In other words, betweenby Stephen - Huntington's Disease Support Center
Thanks for the replies. They were helpful. I believe, over time, she will accept the need for others to watch her. Right now, it's not a problem, and not by any means a hardship for me to take a stand on. She is calm, has the meds she needs, but the psychological effect that happens whenever the thought of people coming in is overwhelming enough, let alone being left with someone. No big dealby Stephen - Huntington's Disease Support Center
My wife Brenda has gone over 4 years now since official onset, and obviously has declined in health. I was wondering if anyone has this one experience I'm facing, and what they have done about it. This may be a simple case of Brenda having become too dependent on me, but the mind being as complex as it is during HD, we don't know. In short, Brenda will not let anyone stay with her and watcby Stephen - Huntington's Disease Support Center