It seems to me that some of the protocol in the COE are based on them being teaching hospitals and instruction requires that they stick to the protocal. We have used both COEs, private neurologists and neuropsychiatrists. They all have good and bad about them but a one to one with a private physician who understands the family dynamics is best. The best results are with a good understanding seby Bridie - Huntington's Disease Support Center
When we first found out about HD in the family our minds were racing in every direction, trying to get a handle on it. It is a very confusing time, wanting a cure 'here and now' and learning all the ramifications of living with this long term disease. It is mind boggling. Allow your mind to wander and settle in to what is best for your family. Don't try to find all of the answers at once, take iby Bridie - Huntington's Disease Support Center
Kerri, you and your husband both are very caring people but are having a terrible time understanding what is happening. Sometimes men see directly what is in front of them but women have wide angle vision. You are both so frustrated. Maybe the social worker at the HD clinic can help you. Which clinic are you going too? You write very well about your feelings, why not print out some of these postby Bridie - Huntington's Disease Support Center
You have travelled a long difficult path but did well. You tried to get him diagnosed earlier but you ran into the same difficulty so many have experienced with doctors who just don't know HD. The lesson which is learned is do all you can now to contact a personable doctor who is familiar with HD and established a relationship now and if HD rears it ugly head again you will be prepared to get aby Bridie - Huntington's Disease Support Center
My two cents for what they are worth. The COE program does much good and obviously they should be involved in new studies and treatments on a daily bases. I could be wrong but I think along with the team approach a lot of their emphases is research and educating new residents and graduate students as to the disease. There seems to be a new group of people involved from the medical centers oftby Bridie - Huntington's Disease Support Center
Make friends with another neurologist and set up an appointment and talk to them independently. Write everything down and present it to him in written format. You may not need a diagnose at this time but you do need someone who will be there to help you if your son starts have problems in school and work and with friends, alcohol etc. I can sympathize with your son and with you but let's faceby Bridie - Huntington's Disease Support Center
Brent your comments have been a suspicion of mine for a long time. Thank you for the validation . I believe that the phd who becomes an excessive drinker fears that he dosen't have the abilities to stop because certain aspects of arresting alcoholism require problem solving skills which aren't prevelant in declining brain function. They just don't know how to begin to take control of the situatiby Bridie - Huntington's Disease Support Center
Here is a very sad situation. I agree that the children and their protection is the very first priority Those of us who have been thru this understand the horror of mixing drinking and Huntingtons. It is a deadly combination because the phd often just can't stop on his own. Does anyone on this site know of a severe alcoholic who was phd who could do it on their own? I wonder if there are anyby Bridie - Huntington's Disease Support Center
Sorry, a correction, the Bill will be coming up for a hearing in the senate committee on Sept 13. Lets keep thinking it will go well.by Bridie - Huntington's Disease Support Center
The vote on the bill is scheduled for Sept 13. Contact your individual state assemblymen to support A387. It can be done.by Bridie - Huntington's Disease Support Center
The Huntington Disease Bill A387/S1735 will be going up for a vote in NJ this fall. It gives state designation to Hartwyck at Cedar Brook which has an HD wing and hopefully increases medicaid beds available to accommodate the long waiting list. The staff really is wonderful and knowledgeable and the phd residence are well cared for and supported with dignity. If you live in NJ please callby Bridie - Huntington's Disease Support Center
It bothers me so to hear that a family has to go to such lengths to get help for an obviously neurologically impaired person. It should be a given if someone is not functioning within a given normal range that help should be available and gotten without having to fight for it and prove how bad things are. People are going to disagree with me on this but I think that PHDs should be required to tby Bridie - Huntington's Disease Support Center
There are doctors above and beyond the COE who understand symptoms which manifest in ways which family pick up in the confines of the home. If the COE won't respect you 'GO SOMEWHERE ELSE.'AND PLEASE KEEP FIGHTING. AT ONE POINT THE COE TOLD MY SON TO COME EVERY THREE MONTHS, FORGET IT HE COULDN'T FIND HIS WAY TO THE OFFICE, let alone getting him out of his room at all, SO THAT WAS THE END OF THby Bridie - Huntington's Disease Support Center
Eric you nailed the problem on the head.by Bridie - Huntington's Disease Support Center
Same thing happened to my son at a little later age. It angers me to hear of your frustration and the lack of understanding of what you are all going thru. I am not sure which Center of Excellence he is going to but I feel that some of the neurologists and pshchiatrist just aren't getting the frustration of the families and the very soft early symptoms or actually how to deal with them. They thinby Bridie - Huntington's Disease Support Center
I have been through similiar experiences as have most of you spending literally years explaining what is up with our loved ones. Care givers who are new to the disease just don't have the info necessary, nor do police, emts, etc. I love the pamphlet idea and I think it would work well in many situations but in a crises who will refer to the pamphlet? 'Ideally' if a major movie were to be madeby Bridie - Huntington's Disease Support Center
I would definately make an appointment and speak to the police department and provide a note from his doctor and have it on record. It puts a clear picture of the problem in their hands if you need to call for help. Our doctor wisely told us to do everything possible to keep our PHD out of trouble with the police, so make them understand his actions are neurologically based. If they misread orby Bridie - Huntington's Disease Support Center
It is a much more difficult situation for a number of reasons but basically I found that the correct mix of medication eventually solved the problem in our house. People may think me wrong but alcohol must be removed from the house and if any is brought in it must be thrown out. Hopefully eventually the PHD will stop thinking about alcohol. I believe that the alcohol is used as a substitutioby Bridie - Huntington's Disease Support Center
Great thought provoking topic. Delay diagnose causes untold hardship in some families and yet I often think that in some instances not knowing is a blessing of sorts early on, living life to the fullest without worry. It seems to me that we never know what is ahead of us in life and can't always plan for what will happen.by Bridie - Huntington's Disease Support Center
OK Here is my two cents worth. I did not know that my husband was at risk when I married him. Everyones situation is different but he was a kind gentle hard working man at that time. Of course he changed and became very passive,less interested and yet at times very aggressive. Also seemingly uninterested when it came to raising our four children. They were not easy years but I grew in strength. Tby Bridie - Huntington's Disease Support Center
'100 percent agreement'. If you drink because you feel depressed try to get some medication to control your feelings rather than alcohol. The alcohol may make you feel better for a short time but the resulting behavior will cause unbearable fear and heartache to those you love. Get to a doctor and explain what is going on so they can help you. Alcohol is never the answer when Hd is in the pictuby Bridie - Huntington's Disease Support Center
To me the rage is a result of the frustration which arises quickly when the phd cannot get a need met. The phd is not only sometimes obsessed with his own needs but cannot stope the obsession. They can't 'work it through'. I think the bases is in perserveration. I always found that if you could jump in early and attempt to diffuse it and affirm that you understand the frustration, it would calby Bridie - Huntington's Disease Support Center
There seems to be somewhat of a common thread that the non Hd spouses family is more supportative than the brothers and sisters of the PHD.This brings me to wonder if there is a reason beyond fear or denial for the lack of interest and support. I can't help but wonder if there has ever been a study of how Hd appears in families and whether even though certain family members don't have it maybeby Bridie - Huntington's Disease Support Center
KK, There have been criticisms of the COE's in the past. I've had some really good results and also some not so good results using them. A lot depends upon how much you trust the Doctor assigned to you and the social worker. I do think that what you might be trying to say is that you need more hands on help and that is not gotten from the COE. They are great for meds adjustments. Use them toby Bridie - Huntington's Disease Support Center
You know so much more about what is happening than so many of those who you are trying to get to understand. Your frustration is well understood here. First know that you don't have to justify your feelings to us. We get what the illness does to our loved ones. More importantly it is not their fault either. This is a process of learning to understand that you will over time gain more controlby Bridie - Huntington's Disease Support Center
We all feel so very strongly about this issue because for one thing we all have been impacted by a terrible genetic disease. Our mindsets reflect our present economical positions. Some of us are really hurting and some thank God have been protected from the fiscal damage of this disease. I for one admit I had a wonderful and safe life before HD, even in the early stages. What struck me so much aby Bridie - Huntington's Disease Support Center
Eric gave you some excellent advice but for myself, taking care of my husband was never dangerous except for the fact that he might fall etc. If your future husband is willing to see a neurologist who understands the treatment modes and get on proper medication as soon 'if' symptoms occur you can live a manageable life for a long time. Honestly I would openly ask him that question and get it inby Bridie - Huntington's Disease Support Center
`I to have so much respect for you as a person as you are approaching this new unchartered territory with an open attitude. It does take a long time to process the information he has received but I do believe and hope that at some point you both will come to understand that there is no way to judge the quality of life in the years ahead. Planning ahead for sickness should be a priority but it isby Bridie - Huntington's Disease Support Center
Hi Oresa, all of this must seem so overwhelming and difficult. I am so sorry that you are in this predicament. The hard struggle we all go thru is realizing that the partner that we trusted with our lives and thoughts and love may no longer be held accountable and we must begin to seperate, not necessarily in person but in trust. Your role as wife will begin to change as you become a caretaker.by Bridie - Huntington's Disease Support Center
I think it is very hard in some phds to change their thoughts about the way they presume things should be. They always drove so why not just continue doing that. Once my husband told me that on his way home from work the driver in the next lane keep beeping at him, "I must have been doing something wrong" he said to me. He just could not understand what he had done wrong or more imporby Bridie - Huntington's Disease Support Center