bluegrasslady There are lots of people who keep the fact of HD hidden. At one time, I felt as if I could judge them and be critical of their decision. I personally think more information is generally better and wise, but at the same time, the news of HD is devastating (as you clearly show) and it can wreck families and marriages. So, as you will find about HD, there are many times no perfby Dave - Huntington's Disease Support Center
Sara, You are right. Do NOT try to keep your brother at your house. I know you hurt for him, but this is more than you can bring in your house. I know you were not really serious about doing it, but just in case, I am asking you to not go there. Daveby Dave - Huntington's Disease Support Center
Here near Washington D.C., it was basically not any worse than a summer thunderstorm. We did pretty well.by Dave - Huntington's Disease Support Center
I'm along the western edge of the path near Washington, D.C., but not very comfortable being this close. I just might drive 3 hours to western Pennsylvania and enjoy the weekend. Why sit here and worry...cannot change anything anyway. The storms usually pass by off the coast. I think the last one that messed with us near Washington D.C. was Isabel a good number of years ago. Back then, wby Dave - Huntington's Disease Support Center
Yes, chapter boards can and do quit over various issues. Most boards are volunteers like a cross section of all of us. Some are caregivers or at-risk, some get burned out. I encourage people to volunteer for your local board because we need fresh faces.by Dave - Huntington's Disease Support Center
Judy, Your life really is not over. I reacted as Marsha did. I do not like that comment and the person has not walked a mile in our shoes. We take what we have and move on, make choices, etc. Yes, we have hardships, but life is not over. There's plenty to enjoy. Daveby Dave - Huntington's Disease Support Center
Falling is generally part of HD. You will need to make your home special needs accessible if you plan to keep him.by Dave - Huntington's Disease Support Center
Audrey, This is just what HD is like. Don't expect logic. I'd bet that more than 80% of the people have issues such as this to some degree. Daveby Dave - Huntington's Disease Support Center
Yes, get LTC insurance now. Waiting increases your chances of being rejected. Get life insurance too. Expenses can drain your assets and life insurance can replenish that....not to mention that life insurance can help you get on with your life after HD. Do not take SSRI medication (for depression) before getting insurance. The mere fact that you take SSRIs can disqualify (or cost mby Dave - Huntington's Disease Support Center
Just letting you know that my wife, Diana, passed away yesterday (Monday) evening--peacefully--age 59. She had not been able eat or drink (except a bit on one day) since March 18. As hard as this journey was, she has been an inspiration and so courageous. I learned so much. Many people have been an encouragement. I am sure I have survived with God's grace. I'm doing well, probably running oby Dave - Huntington's Disease Support Center
Only the federal. The feds first offered LTC insurance back in 2002. My guess is that they are trying to get more people into the program and decided to offer another open season. Wow, Audrey, hope and pray for a huge stroke of luck. If he has not gotten a determination by then, you should apply if you can answer the questions--nothing to lose. They do not ask about HD (not back in 2002)by Dave - Huntington's Disease Support Center
I just heard this morning from a LTC insurance expert. IF you are a federal govt. employee, you will get another open season to buy LTC insurance. Open season means that you will likely have relaxed underwriting questions and asked NO questions about HD. The last open season was 2002, so you see that this is an infrequent opportunity. If any fed. govt. employee out there has been waitingby Dave - Huntington's Disease Support Center
My wife is roughly like your father--bed bound--swallowing is poor. The hospice doctor told me that often a person in her condition lives less than ayear. That said, if you go the feeding tube route, it could be longer. My wife's medical directive says no feeding tube. I am prepared to let her go. I am not sure there is much of an "average" life expectancy. People can dragby Dave - Huntington's Disease Support Center
I think it can be useful in perspective. For example, if a person has a 39 or 40 vs. a 57, it gives me some idea that there is a good chance that onset could be earlier and more aggressive. If someone told me I was HD positive, I'd want to know, because my outlook with a 40 would be a lot different than if I had a 57. I understand there are no absolutes and that the CAG, in itself, does nby Dave - Huntington's Disease Support Center
Similar advice from our COE as well...not recommended.by Dave - Huntington's Disease Support Center
Will. Outstanding. Sounds as if you are WELL protected!!!!!!!!!!!!!!!by Dave - Huntington's Disease Support Center
Ivy, Hopefully the person will have an advance medical directive in which the person's desires are clearly stated. When my wife was diagnosed, we did that. She wants no artifical hydration or nutrition (i.e., no tubes for drink or food). Yes, they will do what they can to get them enough food and liquid, but eventually, it won't be enough. Tha's when you need to be prepared for the eby Dave - Huntington's Disease Support Center
I found that the Smith and Wesson self-defense course works well. :-)by Dave - Huntington's Disease Support Center
Yes, be prepared to do almost all of the talking. Maybe they could think of things to talk about ahead of the visit so they are not let with long silent, pauses. My wife has a blank look 99% of the time, but she has intellect. They understand more than we think they do. I suggest reminiscing with them. I recently have begun telling my wife all the nice things she did (as a neighbor, Girl Scoby Dave - Huntington's Disease Support Center
The COE team at the the University of Virginia has been outstanding. The COE at John's Hopkins seems focused on research--their clinical support to pHDs has been lacking.by Dave - Huntington's Disease Support Center
I thought it would be easy too. :-)by Dave - Huntington's Disease Support Center
It depends a lot on the patient....trial and error. There are temporary measures, but they change over time. For my wife, nothing helped. She would fall over the front of walker. She would fall to the side. If it had wheels, it would scoot out from her. She had no dexterity/perceptivelness to pull hand brakes. If she had a cane, it would get tangled in her ankles and she would not have cooby Dave - Huntington's Disease Support Center
Keep applying. I do not think you will have a problem. This is an important decision. If you have assets to lose, this is one way of protecting them. I have collected over $200,000 from my wife's LTC insurance. Every member of my family that had LTC insurance (3 so far) has collected more than they ever paid in premiums. Not only that, but if you have LTC insurance, you have a bettby Dave - Huntington's Disease Support Center
It takes a long time. I painted my wifes toes for months and months with all kinds of things. She lost a couple of nails, and they came back with the same thing. She got some in her fingernails (and she was unable to touch her toes). Although this looks like a simple issue, it isn't. According to the dermatologist, Lamasil is one of the best meds for fungus, but it did not work. After you aby Dave - Huntington's Disease Support Center
It might be from not changing, but my wife's doc said it was something in her blood that was causing it. I don't remember what his explanation was, so I won't say more. Nothing worked. It is a slow process. He was reluctant to try other meds over concern that it might adversely react with her HD meds. I had to pick my battles--I let that one go. It is a minor irritant. :-) Interestingly,by Dave - Huntington's Disease Support Center
So does my wife. I took care of her toes and nails, so I know they got attention. Plus, I took her to a dermatologist and he prescribed common meds that did not work. We gave up.by Dave - Huntington's Disease Support Center
I agree with Fred and Eric. However, it is not always easy to take in stride--especially in later stages. My wife is much like Eric's in the swallowing sense. But her medical directive is no feeding tube, no artificial hydration. When she is unable to swallow enough pureed food or thickened liquid, you know end-stage is not far off. That's a fairly sobering development to take in stride.by Dave - Huntington's Disease Support Center
I also agree to be easy on the nurse. She sounds like a sweet person. I wish we had more of them. We, in our HD community hear a lot of statements that many people say to comfort us, yet once you walk in our shoes, those comments show little understanding of real life.by Dave - Huntington's Disease Support Center
I agree with Will regarding meds in general. I hate to sound like a pill pusher, but sometimes we have absolutely no alternative to managing behavior unless meds are given. Now is a good time for spouses to talk about this and how they can work toegther to manage HD and preserve the family relationship. Getting on it before it becomes a huge problem is important.by Dave - Huntington's Disease Support Center
These issues definitely need to be discussed with an attorney specializing in elder care. I think that is the key phrase in your posting. These are good questions to ask.by Dave - Huntington's Disease Support Center