Huntington's Chorea

  1. 0
    Hi all...I have a problem...Have any of you worked with a resident with Huntington's Disease/Chorea????
    I posted this on the general discussion forum and if any of you saw it and replied, thank you very much. I had hoped to get more of a reply but that forum moves SO FAST!!!!

    Long story short, my dad who has been out of my life for about 25 years, I found out last year passed away after trying to find him. After talking to his "conservator" she told me that he had a dx of Huntington's Chorea. Need I say that if any of you know about this I FREAKED!!!! After doing research with some of his family whom I don't really know, it was confirmed that it is in the family.

    Now my problem. I am 40 something, have 3 children and feel I need to decide if I should get tested or not. I have weighed both sides of getting tested and not, but the short of it is, that if I decide not to get tested, which I feel is OK, I must pass this information on to my children so that they can decide to get tested or not. If they do decide to get tested, and they or I find out that they are positive, that will automatically mean that I am positive. I don't know if I want to know this. Would you want to know that this is probably how you are going to die???

    Please don't tell me to go to counseling. Been there done that. They basically told me that it is up to me and before I get tested I should consider "getting everything in order". (i.e. Health insurance, long term care insurance, funeral plans, etc.) Alot of people have told me that once I find out that I have this I need to pass this information onto my insurance and possibly could be declined from having insurance and maybe eventually be fired from my job is this disease should interfere with my work. I pray that if I get to that point I will be quitting on my own and traveling around the world to enjoy my life.

    Just to know, what would any of you do, if you know how this disease progresses. I have worked with 1 Huntington's patient and it was the worst experience of my nursing career. I remember saying, that I thought that was the worst disease that I had ever seen. I can't even believe that this is true in my instance, but I feel that I have to deal with the reality that it is. Feeling was on the other forum, that I should get tested. Most people felt that they could not live with the unknown and feel that they should live their live the best that they could now. How do you feel????

    Please be honest, and try to put yourself in my shoes.........

    Thanks so very much.....
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  4. 0
    Actually ADVANCE for Lpn's last edition(NY Edition) cover story was about Huntington's, it actually discussed some of your concerns, about testing. It was about a unit for Huntington patients. I hope it helps.
  5. 0
    Dear MD Slady
    Let me start out by telling you how very sorry I am. You must be going through quite a lot right now, and I hope you have a support group that is helping you with all the feelings you must be having.

    You asked that we "put ourselves in your shoes" when answering this. Tough place. If it were me, I would want to know. I have three children as well. It would be too hard for me not to know where I stood health wise. I would want to prepare my family, and I would want to make sure I had my care in place. (My husband and I have discussed in length our long term/short term care wishes in case of illness or accident) My children are all over 19-23 (I'm 42), and I know they would want to know, and they would want to be tested. If your children are still young, you may want to wait on that until you feel they are emotionally equipped to handle that information.

    I'm wishy washy about the insurance. Me...I wouldn't share that with the insurance company. It's not like you knew anything about your condition prior to giving any health information to them. But that's just me. I have actually thought about going to one of the labs that offer extensive testing to see if I have, or am pre disposed to having, any diseases.

    Whatever you decide, I know it will be hard, and I am hoping wonderful outcomes for you and your family.
  6. 0
    Dear MDSlady,
    I have not worked with a patient that has a diagnosis of huntington's disease, but I do know someone that is diagnosed with it. My sister's mother in law has it. I dont know what stage she is in, but I do know that she is having symptoms where she is easily forgeting things, she has to be watched by her children, she has no control of her flatulence. She's to the point to where she cannot take care of herself as a grown woman should. She is in her late 40s, and she started having symptoms in her 30s. She "jerks" involentarily, she has trouble with her coordination. When she eats, she makes a mess like a child. When she goes to the bathroom she will sometime forget to clean herself. She is still able to get around well, but she is deteriorating fast.

    Now with your situation, if I were you I would go and get tested just for peace of mind. But to be honest, in my opinion, I dont that you have it. Because I see you stated that you were (40 something), and if you are in your 40's and had Huntington's, you would be showing symptoms by now.

    But I know that if you dont have it, there is still a chance that your children can have it. So to end my comment, I think you should get tested and get your children tested as well.

    I hope you are able to get pass this and make a decision that you will be at peace with. Hope you find the answers that you're looking for.

    God Bless
  7. 0
    Hi - Yes, I DID work with several residents with Huntington's Chorea as an LNA. It was a heartbreaker, but was gratifying all the same. There are many websites you can access to explore the disease and its repurcussions further. It's a cruel disease and my heart goes out to you. I really feel that you were meant to find out this information. I know it's scary, but a known enemy is better than an unknown enemy, and it sounds to me that so far, you are asymptomatic. You may have escaped it. It's not an easy decision re: getting tested, and you are in my prayers:wink2: Please keep us posted.:icon_hug:
    Quote from MDSlady
    Hi all...I have a problem...Have any of you worked with a resident with Huntington's Disease/Chorea????
    I posted this on the general discussion forum and if any of you saw it and replied, thank you very much. I had hoped to get more of a reply but that forum moves SO FAST!!!!

    Long story short, my dad who has been out of my life for about 25 years, I found out last year passed away after trying to find him. After talking to his "conservator" she told me that he had a dx of Huntington's Chorea. Need I say that if any of you know about this I FREAKED!!!! After doing research with some of his family whom I don't really know, it was confirmed that it is in the family.

    Now my problem. I am 40 something, have 3 children and feel I need to decide if I should get tested or not. I have weighed both sides of getting tested and not, but the short of it is, that if I decide not to get tested, which I feel is OK, I must pass this information on to my children so that they can decide to get tested or not. If they do decide to get tested, and they or I find out that they are positive, that will automatically mean that I am positive. I don't know if I want to know this. Would you want to know that this is probably how you are going to die???

    Please don't tell me to go to counseling. Been there done that. They basically told me that it is up to me and before I get tested I should consider "getting everything in order". (i.e. Health insurance, long term care insurance, funeral plans, etc.) Alot of people have told me that once I find out that I have this I need to pass this information onto my insurance and possibly could be declined from having insurance and maybe eventually be fired from my job is this disease should interfere with my work. I pray that if I get to that point I will be quitting on my own and traveling around the world to enjoy my life.

    Just to know, what would any of you do, if you know how this disease progresses. I have worked with 1 Huntington's patient and it was the worst experience of my nursing career. I remember saying, that I thought that was the worst disease that I had ever seen. I can't even believe that this is true in my instance, but I feel that I have to deal with the reality that it is. Feeling was on the other forum, that I should get tested. Most people felt that they could not live with the unknown and feel that they should live their live the best that they could now. How do you feel????

    Please be honest, and try to put yourself in my shoes.........

    Thanks so very much.....


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