Kelly B. has a new article up! As usual, it is excellent and very insightful about what it is like to have HD.by Marsha - Huntington's Disease Support Center
No one can require you to terminate a pregnancy. However, if you ask for prenatal testing and say that you will not terminate the pregnancy if the fetus is positive or even that you are not sure what you would do, it is almost impossible to get a doctor and lab to test you. The reason for this is just what your doctor told you. The protocols call for each at risk person to make the decision fby Marsha - Huntington's Disease Support Center
Kelly has a new article about coping with dementia. It's very helpful!by Marsha - Huntington's Disease Support Center
Sometimes when you accept a job with a corporation, life insurance, short term and long term disability, and long term care insurance are automatically offered with employment without a medical exam or questionnaire. My HD positive first husband actually got long term care insurance from his company after testing positive because it was a new benefit and those who signed up when it was first ofby Marsha - Huntington's Disease Support Center
The whole technique is amazing. I remember my first HDSA convention when someone asked if it would be possible to edit out the extra CAG repeats and a researcher responded, "Wouldn't that be nice but we're taking about science fiction." Fifteen years later and science fiction is becoming a reality. I think that there is more research to be done before it can become a treatment butby Marsha - Huntington's Disease Support Center
I am here! I really have been busy, renovating our vacation home and my daughter's new home. The first renovation is in its third year and I am really stressed. I have also been having computer problems again which Steve has just fixed for me. I feel bad about not being here as much and also not covering research in the last couple of years but I just cannot afford to buy access to the artiby Marsha - Huntington's Disease Support Center
Welcome to the forum! I am glad you found us but sorry that you have a need to be here. It doesn't sound like right now is the best time for you to test. You will know when the right time comes. Right now the first gene silencing trial is underway. We all have our fingers crossed! I look forward to the day when those at risk test because a treatment is available.by Marsha - Huntington's Disease Support Center
Thank you!by Marsha - Huntington's Disease Support Center
Welcome to the forum! I am sorry you have a reason to be here but I am glad you found us. You have a lot on your plate. I agree with you that it is a good thing for your dad to test before he loses his job. My first husband was able to get tested and bring in a letter from his neurologist when he started being unable to keep up with his job and it made life a lot easier. He kept his beby Marsha - Huntington's Disease Support Center
Sorry to be so late chiming in. Thank you, Robi, for sharing information. I am very excited about the potential of the trial. I haven't heard or read that if it proves to be a treatment that it would be withheld from all but the nonsymptomatic or those in the early stage of the disease. That doesn't make sense to me. Robi, can you address this?by Marsha - Huntington's Disease Support Center
Yes, that's the 990 that nonprofits are required to file with the IRS. As you can see on Page Seven, the board of directors receives no compensation.by Marsha - Huntington's Disease Support Center
Whoa! Good money for the BOARD MEMBERS? Steve was on the board for many years. He had to pay expenses to attend meetings and donate $2400 a year just to serve on the board. It was a financial sacrifice for us, not a financial windfall. I have had people ask me what the board members are paid. Nothing, board members are not typically paid for serving on nonprofits. Also, the cost ofby Marsha - Huntington's Disease Support Center
I am sorry you have not had replies. It is hard to compete with Facebook these days! Yes, this does happen to people with HD. My first husband would occasionally become confused about where he was. He was still working at the time, on his way to work using a route he had taken for fifteen years when he suddenly did not know where to go next. We were new to HD at the time but fortunately sby Marsha - Huntington's Disease Support Center
You are right not to accept that there is no medication combination that will help. That is absolutely ridiculous! It can take a year or more to get the right dosage and combination for an individual patient and needs change over time. And I still don't think he is end stage. Is he still on the tetrabenazine? If so, that could be the problem. Both tetrabenazine and Haldol are dopaminby Marsha - Huntington's Disease Support Center
I am not a doctor so this is just my opinion as a former caregiver and science writer. It doesn't sound like end stage HD and even if it was, he still needs to be properly medicated. There is no reason he should have to feel such anxiety and anger. He needs a medication change. Haldol is contraindicted for diseases like HD and Parkinson's according to the pharmaceutical guides. If he was dby Marsha - Huntington's Disease Support Center
People with HD can get other diseases too. However, HD has varied symptoms which can overlap with Parkinson's or Alzheimer's. HD and AD share some cognitive symptoms. Also, about one out of eight adults with HD have more Parkinson's like movement problems than the more common chorea.by Marsha - Huntington's Disease Support Center
HDSA has a card which is fine for more detailed explanations but I worry about police misunderstanding why someone is reaching into a pocket. I recommend a bracelet from American Medical ID or their GI-like tags because the sight of the red medical symbol will usually defuse a tense situation. I cannot remember exactly what I had engraved for my first husband but it was something like "Iby Marsha - Huntington's Disease Support Center
You might want to hook him up with the HDSA's National Youth Alliance. He also may be able to get a scholarship to attend the convention this June where he could meet up with kids his own age. The information is on their website. The kids seem to really enjoy the activities and make lasting friendships.by Marsha - Huntington's Disease Support Center
Kelly has written another great article.by Marsha - Huntington's Disease Support Center
Welcome to HDLF. Glad you found us but sorry for the reason. There is a lot of material on this site and we can answer questions. We also try to support each other. I have been taking a long break from writing about research but can answer research questions.by Marsha - Huntington's Disease Support Center
They may not be blatant lies. There can be a short circuit in reasoning where someone pays attention to just one aspect of a situation and then draws conclusions that are unwarranted. A friend of mine's HD positive mother used to do this. If the plumber made a call at the house next door and she didn't recognize him, then she concluded that her neighbor was having an affair. If her cousinby Marsha - Huntington's Disease Support Center
In my sixth week of being sick. I am on the mend but not well yet and am exhausted. I will absolutely get a flu shot next year.by Marsha - Huntington's Disease Support Center
I don't believe that there is any connection. People with HD can get other diseases.by Marsha - Huntington's Disease Support Center
I am so sorry that your husband's disease is progressing. It is not written in any medical books, but yes, constipation is a problem in HD. Basically it has to do with muscle movements and the result is that the bowel movements are unusually wide, to the point where they often won't flush down the toilet. Someone asked this question on a discussion list years ago and quite a number of peopleby Marsha - Huntington's Disease Support Center
Checking in. I am still sick but getting better. The pneumonia kicked my asthma out of control and it took a lot of medication before I could breathe easily again.by Marsha - Huntington's Disease Support Center
I have pneumonia. I think I am starting back on the mend now but I am really exhausted and will probably not be able to log on and reply for awhile longer.by Marsha - Huntington's Disease Support Center
Nonprofit groups need money and do solicitations at the end of the year. That doesn't bother me. What does bother me is an organization that raises money to pay the salaries of people who don't give a flying fig about the mission and whose job it is is to raise money. There are very few people left at HDSA who actually care. It's sad.by Marsha - Huntington's Disease Support Center
Welcome, Diane! If you have a question, start a new thread and post it. If you want to respond to someone then do so in the existing thread. Sometimes people want to speak to each other privately and then you use private messaging in the upper right corner. If you type in their user name (such as Marsha) then the message will go into that person's inbox. There aren't too many rules here.by Marsha - Huntington's Disease Support Center
I do think that atypical antipsychotics such as Seroquel are beneficial and I think it is reasonably safe to take. It is really, really important to get a good night's sleep with HD. If Laura wasn't experiencing side effects and was getting a good night's sleep, I think she should talk to her doctor about possibly resuming the seroquel.by Marsha - Huntington's Disease Support Center