My wife (Linda) is 35 years old and is at-risk for HD. Her father died of HD last year at 65 years old. Her sister (Mary) is now in active HD at the age of 41 with significant chorea and loss of personality. Mary has had a lifetime of drug and alcohol abuse; before we knew HD was in the family everyone assumed that her odd behavior was related to that. Linda has two other sisters in their mid 40's who to date have shown no signs of HD and have never been tested. She also has a brother who is 38 who has been genetically tested positive and shows very minor signs of the disease.

Linda is in the medical profession and has read a lot about HD, but has never treated a patient with HD; her dad and sister are the only people she has ever met with HD. Linda's Dad was not a "textbook" case of HD; his onset was at 50. He never had significant choreaand he lost his ability to communicate before any memory loss. Mary's case is like reading a book about HD; all the symptoms are coming and coming quickly.

Linda is absolutely tormented. Based on an occasional lack of balance and some perceived memory problems, she is convinced that she has HD. I might be in denial, but I come up with reasons for both the lack of balance (she is 100 pounds overweight) and the memory problems (they are not significant and I have the same problem--she has a very busy career with 1000 different things going on). If I suggest she might not have the disease, she dismisses me as a layman--I don't understand and I'm just in denial.

She does not want to be tested; she wants to avoid the label and the medical record for as long as she can. I would like her to be tested. I just want to know because either (1) I am in denial and need to come to grips with the changes in front of us or (2) she doesn't have it and we can go on with her life.

I know this decision is not about me, but I need some advice on how to personally deal with this unknown. Should I suggest that the possibilty remains she might not have the disease or should I just let her be in charge? Does the fact that she thinks she has it mean she probably does? Does the fact that her sister is at the stage she is at at age 41 mean if my wife has the disease, she will be at the same stage when she is 41? She gets mad that her mom avoids the subject of HD, but if I bring it up, she tells me she doesn't want to talk about it. I don't know how to communicate with her on this.

Any thoughts are most appreciated.

I was in your wife's shoes not too many years ago. The only difference is that I was much younger. At 20 I met a man and fell in love. I wanted to marry this man and have children, but for the past 10 years I had watched my father go from a strapping strong farmer to a man that I gave baths, cooked, cleaned and all while in high school. So I felt it was important to be tested. This was a VERY personal choice. I kept it from all my family, even my Mom, and especially my Dad and brother. I have the same blood type as my father. I thought this meant I was sure to have HD. I look like my father and act a lot like him as well. Everything I had once been so proud of now seemed to turn against me, at least in my head. Now realistically none of this has anything to do with my chances of getting HD but that was hard for me to think about as they drew my blood and told me to come back in a week. My grandmother had HD and began to show symptoms at 21 and died at 41, so when my father didn't show symptoms at 30 they felt it was safe to have children without fear of HD. Well, at 40 my father was diagnosised with HD at 45 he went into a nursing home, and now at 52 he is in dipers, has to be fed and no longer speaks more than one or two words in a row.
One thing you must realize is that every HD patient is different and you can't compare any think to your wife. I know how really her fear is of just assuming she has it. It just seems like the first twitch or shake and I was sure I was HD-pos. as well. It must be a way of preparing yourself for the worst.

I tested Neg for HD on August 23, 1997 am now married and expecting our first baby in December. The best gift anyone every gave me was the freedom of knowing I would never have HD or pass it to my childern. But to this day my Brother does not know i have been tested. HE is very different that me and at a different point in his life. The choice to be tested is very personal and I don't think you should push it. If your wife wants to be tested, she will. Money is no issue. You can find ways to get it for free, I did.

Hope you find comfort in my story.
God Bless
Kristie

Thanks for your story. I can only hope we have the same ending you do. God bless you and your dad and family.

Scott

In response to getting tested. My husband had signs of hd. I had to take a loan out to have his MRI.Now we are told to get a genetic test done at the cost of about $900 and we don't have insurance,how did you get it for free.My two sons are told to have to test too.If there is a way to be tested free it would be a helpful. Thank You,
Paula

Paula, there is no reason for you to have to pay $900 to get the genetic test done. If he is showing symptoms, then he doesn't have to go through the counseling procedures for presymptomatic testing. The test should cost around $200. Your doctor can have a blood sample taken and sent to a lab.

my wife was tested in May of this year and the results were positive. She is 33 years old and during the last year her personallity changed 180 degrees, not for the better either. Finding out she had the gene has made things worse for us, every slip of her memory or balance issue leads her to believe she has already started the disease progression. Her emotions are all out of whack and though I may be in denial too her doctors say that she is in the very very early stages of HD at best. She looks at everything exactly the opposite and as a result we hardly communicate anymore. So while I was like you and wanted her to be tested the outcome of the test and the personallity afterwards were not what I expected. I thought knowing would allow us to deal with it and instead it only componded the problems. I wish there were easy answers to give and I know where you are coming from but you need to be prepared for whatever answer you recieve if you go through with the testing. Your not alone in what you are going through but that doesn't make the road any easier to travel.

I have a question regarding HD. Is it a disease that can skip a generation? My father had several brorthers and sisters that have or had HD. He is now 79 years old, was tested negative for HD about 8 years ago. I am his 39 year old daughter and sometimes I wonder if HD can skip a generation?? My parents assured me that I have nothing to worry about since my dad does not have HD, nevertheless I would like to have a third party to reconfirm this. I now have a 15 month old baby and I just want to know for sure that he won't be at risk for HD.

If necessary, is there a reliable test to see if my son or I will have any chance of developing HD? What is the typical cost?

Thanks.

Ignore the message above. I Re-Posted the question by itself on the message board.

I am 32 i feel I am showing early signs of huntingtons. I had my blood drawn 2 weeks ago. I my dr. sent it in to be tested and they told him they wouldnt test it until I have the counseling. which would be about 1000.00 out of my pocket which I cant afford. Please tell me more about not having to do the couseling.

The same thing happened to my husband when our family doctor sent his blood sample in for testing. The lab wouldn't test because the doctor felt he was presymptomatic at that point. What we wound up doing was telling the lab to hold the sample and he went and got the counseling at one of the testing centers and we paid for it out of our pocket.

Since then, we've learned that the clinical social worker who works with our local HDSA chapter would have done the counseling for free. Check and see if there's a local chapter and if they have a social worker who could do this.

There is one testing center that will do counseling and testing for free (they have a grant) and that is Johns Hopkins so if you live anywhere near there that is an option. (Their lab is very, very slow though). If you are not close to Johns Hopkins, you could also contact the nearest testing center and ask about a sliding scale for payment in case that is possible.

If the doctor thinks that you are showing clinical signs of HD and he just wants the test to confirm that it is definitely HD and not some other disease, then you don't have to go through the protocols for presymptomatic people at risk.

In any case, counseling and support are really important. It's just a shame that it has to be tied to getting your test results because that makes it seem like a hurdle to be jumped through.

I got my presymptomatic testing done at Johns Hopkins in MD in 1998. It took about 8 months for me to get my results (6 visits). The program consisted of both a blood test to detect the CAG repeats and also counseling and neurological tests. My last visit I was told that they had lost their funding for that specific Program. They now have a new Program, but I am not sure exactly what it entails. Your best bet would be to look it up on their website.
Good luck-
Jen Darnell