For two weeks I have been confused. I am 52 two years old and just got the news that my brother who is 54 years oldand has tested positive for the gene of Huntigon.

I live in Norway, have five wonderful children in age of 8 to 27 year. In my family history there is no sign of Huntingons. But my mother died in age of 52, diagnosed with Mulitpel sklerose. At this point I do not know what to do? I have no symptoms but I am afraid that I have the gen and will give it to my children. I am not sure that I will test myself for the gene. Should I talk to my children? It is a mess. My brother says to mee tha he has had symptoms, depression and movements for ten years ,and I think that indicates chorea. I am very happy to join this forum since there in Norway is no action on the forum for Huntingons descise.

Best regards
Anne
who is very confused

Welcome Anne. You have found a wonderful support community. I think you will get some wonderful assistance with questions but ultimately the decisions are up to you. Judging from the wide variety of people here affected by HD in one form or another there will almost always be someone who can understand. I am truly sorry that you had to find us due to HD but it is the reason we are all here. It seems no matter how far away we may be HD is universal.

I'm not much older than your brother and did not have a family history. You mentioned your Mom and I also wonder whether it was MS or HD. I'm not certain of how you tell the difference in testing. Do you know your brothers CAG count. In case we lose something in translation it is the genetic marker.

Try to be positive, you have a 50/50 chance. Look at it as if you have a 50 percent chance of NOT having the gene. As far as testing it is a personal decision. Some want to know and some don't. I would bet your brother tested because he was symptomatic and needed answers.

I'm not sure what you will accomplish by telling your children at this time. My children are similar in age to your oldest and seem somewhat indifferent about testing. I think their opinion is I don't want to know unless I'm symptomatic. As a parent I think I want to know but again I don't.

Feel free to lean on this community.

I wish you an yours the best of luck,

Mike

Thank you for the words. I do not know the GAG for my brother, we had little contact through the life. He is going to several testing but the blood test said it all, he is positive.

I am a nurse and have education in Huntingon disease since one of my pasient has this disease. I know all the symtoms. This is awfull, I know and I do not know. And no I am looking at my self " do I have some symptoms,, since I am as old, soon 53 the symptoms have to come.
I hate this, I really do.

Anne from Norway
who is not god in english writing

I am 53, if I am testing my self and get positive for the gene then I would know that I would get sick soon. I am not sure that I can manage this information. And the other side I have five children what about their future. I have just have the knowlede of this disease for two weeks, seen my doctor and we are agree to wait and see.

Hello Annekri.

Your doctor gave you good advise. Try to stay positive in knowing that you are nearly the same age as your brother, and you are not yet having any symptoms. That is a good sign to start with. Many people after finding out about HD in their family have this first reaction to test right away. You need time to let the information settle in and figure out what to do. Mike is right, you have just as much chance of being negative as you do to be positive.

I would tell your children what is going on with your brother. Your background as a nurse will help to explain the risk to them. When you are emotionally ready to know, you will want to test. It is a very personal choice. Some friends in their 50's decided to test once their children started to think about starting a family. (Fortunately for her family, she was able to give her family good news that she had tested negative for the gene.)

Welcome to the forum. There are friends here.
Patty

You're doing fine with the English. I like Patty's response, it sums things up pretty well. Hang in there.
Mike

Dear Annekri
welcome, also Europeans are most welcome on here. I myself come from Switzerland so we are on the same side of the Atlantic. Beside my current job I am studying chinese medicine and got to know some patients with HD.
Within my studies, my teacher and myself work with some patients on the improvement of their quality of life. This mainly by means of good nutrition, chinese herbal medicine and also acupunctur.
As chinese medicine is based on prevention so it may well be helpful for you too.
Please note that some time ago in the CHDI newsletter they were mentioning a lady in her 80 ies who had hardly any symptoms but carried the gene all her life. So there is allways a chance that onset is very late or may not even happen.
I keep fingers crossed for you to keep healthy for many years to come.
Take care
Ernst

Thank you for nice words.

I will not tell my children yet because I have to be calm and not make them afraid. For this moment
I am going to take more education in nutrition and fyscial activity. I hope that I do not have got the gene
and if I have got it I will fight back .....

Anne

Anne,

Welcome. I spent time in Norway some years ago with the US military (Marine Corps). It happened to be the year of Trondheim's 1,000th birthday. That made we Americans feel like newcomers. I fell in love with Norway and Norwegians and hope to return some day.

Your English is just fine!!

Will

Hi
welcome to everyone
i'm newly in this forum.

[www.theboysshopping.com]

Welcome Jhonmarvi. May I suggest you start a new post so members won't miss your post and you get an adequate welcome.
Mikie

I just want to mention that there was no family history for us either. My father-in-law had a low CAG count (the blood test number) and lived to be about 80. Use the "search" area of this forum to look over older posts. Will and Smiling Sara have written about their supplement and exercise regimine that certainly sounds like it would be helpful for anyone. I imagine Norway has some very good fish oil and that's one of the recommended supplements!

I just wanted to welcome and add that I wish I had been on this site before I tested positive. I have three kids and thought I could tested negative for them. I wish I had been more prepared. I have learned so much from this and don't think I would have made that choice with better information or would have at least prepared my life better.

I'm 53 with a 42. Doing good with the supplements.

I am going to study more about this disease and will take the test when I am ready to cope with the answer. I want
to be sure that I can live with the fact that my children are at risk.

Anne

Now it is february and I have calm down. I have learned a lot from this forum, thank you all.
I have desided to wait and see, my brother do not know his GAG number and is going to his doctor in March for more information.
He cannot walk properly and talking is difficult. He is also very depressed, been that for many years. He has tried to kill him self
twice. To me he says that the most difficult thing is that he is so tired all the time, just want to sleep. He have also lost most of his
teeth and lost a lot of weight. He tells me that he have this symptoms since 2005. My mother got symptoms before 40 and the diagnose
was MS in her forties. She died at age 52 (stroke), she could not speek or walk.
So far I have not told my children about this disease yet since I do not have any symptoms.

Anne

Now I am sure

I am going to test myself. My oldest daughter is pregnant. My brother is going to see his doctor 19 March, I have asked him to
get information about the GAG number. I have not told my children yet. I want to wait and see if I have the gene. I think that I am so old
now, 53 soon and no symptoms. If my children have the gene they will probably not get the symptoms before their forties or later like my brother.

Anne

Good luck Annekri.

You seem to be in a better place mentally.

Patty

You know Anne, a positive attitude will do wonders. Not a day goes by I don't think about the day and many tommorrows and how HD affects them. Be positive. I think not telling your children is the right thing to do. My children were told from the beginning and they really chose not to understand what gene positive really means. I'm not going to alarm them. My oldest is thinking about children and testing. If he test positive then we'll deal with it. I hope they take this seriously. But really, what do you do at their age. Don't have children; have children and hope for a cure?

Best of luck,
Mike

Thank you for the words Mike.
My brother CAG are 43 and I have told my children about the disease. They are worried about me, afraid of losing their mom.
I seen my doctor today and told him that I want to test myself, and hopefully I will know the result of the test next spring. If I
test positive then I will reduce my job as a nurse. Walk to the mountain, skiing and fishing. I want to be close to my family and
friends before I lost myself. I want to be a great grandmother and write down my history of life.
Anne

Thank you for the words Mike.
My brother CAG are 43 and I have told my children about the disease. They are worried about me, afraid of losing their mom.
I seen my doctor today and told him that I want to test myself, and hopefully I will know the result of the test next spring. If I
test positive then I will reduce my job as a nurse. Walk to the mountain, skiing and fishing. I want to be close to my family and
friends before I lost myself. I want to be a great grandmother and write down my history of life.
Anne