Amber is so right on target. Sounds as if your Dad is in need of lots of help from the state.. You job is to work on the help that the state needs to provide for a person diagnosed with HD who is just incapable of providing and protecting himself and others. Everything must be documented before they will step in, but the very best place for him is a place where he will be taken care of and giveby Bridie - Huntington's Disease Support Center
It is my understanding that the American Disabilities Act prevents companies from letting people go because of a disability. Generally they become much more compassionate and try to work with the employee for a while. That being said a diagnose takes so much fear out of being forced out of your job. But in order to do that you must submit a letter to your employer stating you have a diseaseby Bridie - Huntington's Disease Support Center
There really is no reason for you to be suffering like this. You are too inexperienced to know how to handle it all. Your Dad cannot help himself and because of that you can't do much for him unless he is in the hands of a professional. You cannot control his behavior, after all he is your father. What you can do is get help for yourself. If you have the gene you should contact a center of Exby Bridie - Huntington's Disease Support Center
Until our medical system realizes that HD is a very complex disease we family members will always be fearful that our loved ones will not be judged 'sick enough' to qualify for placement. If the facility where she resides is specific for HD placement they do understand. Knowing her behavior can change in an instant, they are prepared to deal with her and eventually she will settle in and be conteby Bridie - Huntington's Disease Support Center
Most important to be honest and up front with them. Teenagers are very perseptive so they probably suspect something already. How they react will be influenced by your actions. Let them know that you will always be there to support their decision as to whether they want to get tested or not for the gene. It will take them awhile to absorb the news so give them plenty of space and support.by Bridie - Huntington's Disease Support Center
I have thought about this for a long time and have come to the conclusion that this disease sometimes brings on an inability to assess and define things as they are. There must be a section of the brain that gives us a 'sense' that something is wrong and in some families that part of the brain is affected. The brain is so complex. That is not saying that there is a fair amount of denial alongsidby Bridie - Huntington's Disease Support Center
These agencies expect to lock you in for payment. It might be advisable to hire an out of area attorney and have him write a letter to the agency requesting that your contract be null and void due to their stating they know about dementia and took on your case because they felt that they could handle it. Obviously they don't understand the complexities of this specific disease. The attorneby Bridie - Huntington's Disease Support Center
Not being able to put your finger on the problems without the HD diagnose is difficult. It is more difficult when the disease is diagnosed and you begin to understand then that there is no easy solutions, there is no cure and problems can get much worse. I think to understand that you gave her the very best life you could even just for the short time is better than her not having those years.by Bridie - Huntington's Disease Support Center
I think the driving thing 'could' be early HD because there is an inability to keep constant pressure on a gas petal or even to press something with constant pressure with the hands with some people.by Bridie - Huntington's Disease Support Center
Howard I know what a wonderful caring parent you are. Again and again we parents who have taken on caring for an adult with HD must suffer the injustices to our families due to ignorance of so called educated medical professional. If anyone understands this disease it is the people who love those with HD inspite of the difficulities caring for them. And yet we spent our lives trying to exby Bridie - Huntington's Disease Support Center
This is a great subject to touch on. I have often written notes and mentioned that my phd would love to have visitors in his NH to old family and friends. Even just a stop by for 15 minutes. Noone ever comes. Comments always are that they have to get over to visit, but never do. I understand family being in denial and afraid of their own possible fate but I don't get it with old friends. Iby Bridie - Huntington's Disease Support Center
A good start would be to find out if any relatives were at risk or showing symptoms. If not anything you do at this point would become very difficult to prove short of genetic testing. The Hd Association might help with lining up your ducks in a row meaning you would have all the information as to where to go for immediate help if problems become severe. Otherwise I would continue to see a psby Bridie - Huntington's Disease Support Center
You don't mention if there a history of the disease in her family? Dublin has an HD office which might be able to direct you to the people who could help you. Unless GPs are familiar with HD they don't always pick up on a diagnose. Of course her symptoms could be of something else not HD.by Bridie - Huntington's Disease Support Center
It is difficult to know what is causing your symptoms. However the older you get you might become more anxious, thinking that if you do carry the gene it will begin to manifest itself. In our family, testing was delayed until it became obvious that not knowing was interrupting life decisions and choices. It is hard to go forward not knowing where you are headed, how to plan for the future. Ifby Bridie - Huntington's Disease Support Center
I am so sory that you have to deal with your mothers rants. Remember that the Mom who was once loving is being impacted by this disease and really it isn't her fault. The hardest thing to do is begin to learn to separate emotionally and understand that HD is like so many other disease but in some ways even harder to deal with. It is a learning process to protect yourself. You are going thru a sby Bridie - Huntington's Disease Support Center
The legal barriers which protect the rights of PHD'a to refuse medication to control behavior have in the case of HD caused more harm than good. A PHD has a responsibility and a moral duty if they wish to live in our society. That being said education of caregivers goes a tremedously long way to thwart extreme behavior. Lets remember that the disease causes the behavior and the inability ofby Bridie - Huntington's Disease Support Center
We did not know it was in the family and had teenagers when it was diagnosed in their father. The adjustment was extremely difficult and it continues to wrecked havoc on their lives. Unless you live it right to the end having you family watch the suffering and know that there is a good possibility that they have a fifty percent chance of having it, I really don't think that you can understby Bridie - Huntington's Disease Support Center
Even though he hasn't been officially diagnosed with onset, that does not mean that what is happening to your relationship isn't part of some very early symptoms, passivitity, negativism, anger, outspokenness etc. If there is depression don't assume that it is not ideopathic. The disease is very sneaky early on. You might be able to get him to agree to the fact that he 'might be depressed' andby Bridie - Huntington's Disease Support Center
There are many reasons why it is difficult to get testing when HD is a possibility. Primarily because there is no cure at this point and because an individual had the right to refuse testing up to a point. Family ramifications are certainly a factor also. People would rather just put their head in the sand. It took me over five years to get family members to agree to testing and at that point thby Bridie - Huntington's Disease Support Center
Hi, it is so sad to think about what is happening here. He has just received his diagnose and is still coming to learn to accept his fate. He can do much with his life and it can be ok for a while. However there is no changing whats ahead at least for now. So please forgive me if I say that I am going to be a devils advocate. You are both still so young and there are no guarantees in any relatiby Bridie - Huntington's Disease Support Center
Not sure about future coverage under the new Health care but I do know that you cannot allow her insurance to lapse for 'even a day' between when she leaves your policy and gets a new one. Make sure that they overlape, so coverage has never been dropped. If there is a hint of the possibility of HD in any medical records she might have a problem finding insurance.by Bridie - Huntington's Disease Support Center
This disease can be exhausting and horrible on so many levels. Some people can be ok pretty far into it and you life can be good for a long while. But as you have already begun to get a taste of, it is a challenge. I think success is based on the realization that you must be open to and accept and that there is a very good possibility that you cannot be expected to care for him if he becomes danby Bridie - Huntington's Disease Support Center
I am sure that there are some neurologists who have testified in court cases for PHD clients. If you are in a larger metropolitan area I wold contact a neurologist and ask if he knows of any lawyers who might be able to help you.by Bridie - Huntington's Disease Support Center
Hd is a difficult disease to understand, especially if you didn't even know it existed. It can take a very long time to 'get it' and more importantly to accept it. I know that the first ten years I was dealing with it I made many, many mistakes with my phd. I was just plan angry at how life changed so drastically and how the future seemed so helpless at times. However I didn't give up and eventby Bridie - Huntington's Disease Support Center
This is going to sound really nasty but sometimes I think and it is my opinion only, because of recent events in my phds life, that when a hospital or rehab or whatever finds out that the person has HD they treat them differently and are just as satisfied in sending them out the door as they are in keeping then. I think that they don't have the time or expertise to treat someone who has continualby Bridie - Huntington's Disease Support Center
It is very hard to watch someone suffer from HD and know that you also carry the gene. The important thing to remember is that you are not that person and that you can well prepare yourself so you are not doing those things that he did. You mention that you have a sister. Will she help you prepare as to how and what you want when the time comes that you need help? I suspect that she will help youby Bridie - Huntington's Disease Support Center
One other thought, phds really can't adjust to things that are brought to them unexpectedly. It is possible that if you had told him ahead of time who you were bringing with you and he knew what to expect he might not have had that reaction. Having you visit to his home is a safe place in his mind. Tell him ahead of time who is coming with you so it is not unexpected and assure him that this persby Bridie - Huntington's Disease Support Center
Hd can cause paranoia and the words said are from someone who is sick. Perserveration is another part of HD. The phd gets fixated on a thought and runs with it sometimes for months. It is scary to hear these thoughts because they do not make sense. This all means that what he thinks he heard and what actually happened can be very different. It is most important for you to understand this andby Bridie - Huntington's Disease Support Center
Carla, he can still have quality times ahead without the concerns and worry about his job status. He needs to have his doctor document his limitations very thoroughly and very specifically. It is all in the way the report is written and submitted. There was a web site awhile back with specific explanation about wording for disability. Good luck to all.by Bridie - Huntington's Disease Support Center
Sure will keep them in my prayers. He is so fortunate to have STD, does he have LTD?by Bridie - Huntington's Disease Support Center