First of all they are required to keep her until a new place is found at least for now. They can't put her out on the street. The fact that they are not meeting her needs really means that they are 'uncomfortable dealing with her needs.' The fact that she is difficult is a fact but you seem to have given them the tools to help deal with her and they are not listening or 'fullfilling' their partby Bridie - Huntington's Disease Support Center
HD is difficult in so many ways, as the brain is slowly shrinking and it is difficult to determine which part of the brain will be affected in any given time period. It is really complicated because symptoms can manifest differently in different people. There is no pat answer to many problems but there are solutions to most of them. In many instances it requires creative thinking because he may nby Bridie - Huntington's Disease Support Center
I really think that his not wanting to move is because of the thought of change causes uncertainty. I stopped listening to excuses and just went ahead and moved and it really was right. You have to do what is in the best interest of both of you. If you medical is so far away you have a definate reason to move closer to it. Also some support and maybe some daycare facilities are important to consiby Bridie - Huntington's Disease Support Center
Danne, as hard as it seems you must begin to document this events. I would visit the police station first and explain HD to the station, just incase there is another episode. Reason being, you don't want him placed in a jail but sent to a psyc ward. Have a letter from a doctor explaining his 'medical' condition nearby at all times. Because of the nature of the disease the explosions can come anby Bridie - Huntington's Disease Support Center
There are so many misunderstanding about HD even among specialists. The best doctors are those who have seen many cases and accept the broad spectrum of symptoms. I've had the same problems with some doctors I am not sure why you had the experiece with the COE but I would guess that they feel that you should not have been manifesting symptoms yet with a 36 count. There is still 'so much' to learby Bridie - Huntington's Disease Support Center
Of course nobody would give up their wonderful time with their children and raising them. And caring for a spouse thru the years can be very much a blessing. However when HD is in your life day and night for over forty years, with your spouse and children and grandchildren and maybe even great grandchildren you have to be realistic, HD becomes your normal. You might have had the ability to stoby Bridie - Huntington's Disease Support Center
Make sure that the neurologist who gives the test is very well versed in the problems associated with HD. Judgement and perception of dangerous situations can be impaired and lead to slowed and poor problem solving techniques. The need to anticipate safety issues associated with children, quickly warn then and protect them in a safe setting is obviously really important. Sounds as if he hasby Bridie - Huntington's Disease Support Center
HD manifest differently in different persons. In some it has very little psychatric effects in others there can be very violent behavior. I wil say that placement can be very good because of the consistancy of schedules and socialization. If you wait too long the adjustment to placement can be more difficult. There is no set answer for everyone with HD or one which is better than another. Andby Bridie - Huntington's Disease Support Center
If I were you I would first seek out advice from an 'elder' attorney who deals with seniors and medicare and who understands assets and how to do this the right way. Gather all of his papers and go and speak with a knowledgable person. Before you can decide what to do you must understand what is ahead.by Bridie - Huntington's Disease Support Center
I can tell you that by preparng and knowing, that at some point the HD will arrive and it will not be the same and as bad as it was for your father. Because everyone is aware of your diagnose, people will be more understanding. I am not saying it will be easy but at least people who understand will be able to help you on your journey. There are tremendous strides being made on helping to delay onby Bridie - Huntington's Disease Support Center
I have been on this forum a long time since its early posts. This topic has come up many times and there are strong feelings on both sides. In the early days the gene had just been discovered and prior to that nobody know which children would or would not get the gene so it really was a roll of the dice. When you are young and have only been dealing with the disease for a few years your thoughtby Bridie - Huntington's Disease Support Center
Hi Carla, wow you really are in the middle of a rock and a hard place. You might benefit from sitting down with a psychiatrist who can direct you as to how to proceed. A councelor may not understand what is happening to his brain. Sounds like he is not doing any of this purposely but dosen't really get why it bothers you so much. I can tell you screaming and fighting will do nothing. I woby Bridie - Huntington's Disease Support Center
First I would explain that your father is extremely ill and you are worried about him. Wait a few days until that sinks in and then I would tell him that you might be going to see him for a few days, be specfic about the dates. See how he reacts to that info. Then slowly explain that you are upset and cannot consider having him on the trip because all of your attention will be on your father. Becby Bridie - Huntington's Disease Support Center
Your son has only known his fiance for ten months so the bloom of romance is still high. Plus he is in his early 20's. As hard as it sounds see if he can pospone the wedding at least a year. Sounds as if they are rushing into this. I respect her decision not to test, after all it is her decision. Suggest to him that he see a genetic counselor with her. It is only fair to both of them. If sheby Bridie - Huntington's Disease Support Center
If he is having trouble swimming he shouldn't be in a pool alone with your son alone. The scratches could be from any injury, walking sideways into a sharp object or even leaning backwards too hard, depends upon how advanced his movements are.by Bridie - Huntington's Disease Support Center
A person in the grey range, between 37 to 39 count, may or may not develope the disease. So the disease is diagnosed as such at the point that symptoms become present and are diagnosed by a professional. Having a count of 40 and above means that the individual will at some point, if they live long enough, develop the disease but will not be considered as having the disease until officially diagby Bridie - Huntington's Disease Support Center
If you have the hd gene which expresses an elevated cag repeat whether or not you become symptomatic or not you still have the gene. It can possibly be passed to the next generation at that same elevated but low mutated count and that person also may never be symtomatic. Then passed again in the next generation and possibly mutate into a higher count which might make that person show symptoms earby Bridie - Huntington's Disease Support Center
I think that because you have not been diagnosed with HD it would be very hard for them to deny you and you might be able to sue them based on a possibility. These are the types of questions which are just beginning to surface with the Insurance companies. I also would like to hear of others situations. I always made sure that my family had coverage and never dropped it for a day because I thouby Bridie - Huntington's Disease Support Center
Logical thinking has been affected and there might be a medication that will help the compulsive thinking. I also think that it takes time to begin to change roles in a family. Don't get into an argument but rather begin to slowly try to explain that you are fearful of what might happen to the family if money is wasted. Try to incorporate his wishes about some control over money that he willby Bridie - Huntington's Disease Support Center
Wow so sorry that you are into this so soon. You will get understanding and support here. Sometimes people with HD really do fail to understand the problems in front of them even with explanations, so intervention may not be the way to go. Does he have disability insurance? It might be necessary begin from this point to document the problems so it is possible to protect the business and the cby Bridie - Huntington's Disease Support Center
Write a note beforehand with your concerns and submit it to the nurse and ask her to hand it to him. Keep a copy and tell him that you have real concerns about your abilities. Sometimes they respond to the written word plus you have a record.by Bridie - Huntington's Disease Support Center
I go back and forth over this. I guess that there really is no one answer to give to this very, very heartbreaking situation. You both seem like such good people. I pray that you are able to make and accept the decision which will bring you both to the right place.by Bridie - Huntington's Disease Support Center
Send that into Readers Digest, what a beautiful story!by Bridie - Huntington's Disease Support Center
I love the idea of planning a trip, it gets your mind onto something really wonderful and enjoyable and makes you move forward in someway immediately. That is a good first step for someone who might be positive or not. Make it a dream trip for you both, you deserve it either way.by Bridie - Huntington's Disease Support Center
I find this thread very interesting. How can it be that only one or two people from the same genone group in a larger family show so few symptoms and have variation of onset very late in life or so much earlier, or seemingly not at all? Someone once said to me that the age of the parent at conception could be part of the influence along with sex of HD parent affecting age of onset, meaning thby Bridie - Huntington's Disease Support Center
I am not sure that determining disability is based on not cooking driving etc. I think that it means that the person can't function independently. So not cooking means they can't execute the shopping, organizing thoughts to prepare meals cooking without the posibility of danger, dropping things etc. I think that you have to say things about times that he messed up on these functions and be speciby Bridie - Huntington's Disease Support Center
We all have had different experiences wth this disease. Unbelievable ups and downs. I think that it is almost impossible for a woman with two children looking for a new relationship to walk into this disease knowing what the outcome will probably be. On the other hand some of us have managed OK despite the pain and terrible suffering. But mostly these are people who had much more time to assimiby Bridie - Huntington's Disease Support Center
I know it all seems so complicated and difficult. But what needs to be on the SSDI application is certain wording which fits the criteria for the approval. The others are correct. Just work it all to fit the criteria that Phil suggested and make sure that the neurologist understands how to say what is necessary for approval....basically that he can no longer perform his job at the level he once dby Bridie - Huntington's Disease Support Center
Preservation is so part of the disease. Remember it is not him acting but the disease in him acting. If you think of it that way it might help. Try never say no outright. Try something else for a while like, "Hey lets go get some ice cream for now and we can think about that later. " My favorite phrases are "It might be possible later or it could be, or maybe, maybe not." Whby Bridie - Huntington's Disease Support Center
Thanks Marsha for telling it like it is. I think it is hard for people to understand why it is so very difficult to live with. The worst part is knowing as a spouse or parent what is happening to a loved one but then being 'informed differently' by unknowing people in the medical profession. You feels so totally helpless.by Bridie - Huntington's Disease Support Center