I don't post too often here but received more bad news tonight. My mother was part of a family of 4 children, 3 which have been positively diagnosed with the Huntington's gene. The 4th could have had it but was never diagnosed. Her youngest sister diagnosed today which now brings her two kids, two grand kids and two more on the way with the potential to have the gene. My step father thinks that I should be tested to set my mind at ease and I know that when my daughter gets older I will have to do this but can anyone give me a good reason to do so now? I would love to take the test and find out I don't have it but not sure how I would handle the results if I do. I am angry at him for suggesting it as I don't feel that anyone not in this boat should make that recommendation. I guess he feels he can because he had cancer and has beat it. There is no beating Huntington's. I know I am rambling but my real question is this, has anyone ever gotten a positive result and been able to do something positive because of it? I have always thought better not to know and think I do rather than know I do.

I'm sorry for what you are going through. It must be very hard to be faced with these decisions. That being said, no one has the right to tell you when you should or should not test. You are the person who will live with this information for the rest of your life and you alone know how that will impact you. The best thing you can do now is gather all the information you can about the testing process and make sure you understand its implications, both emotional and in terms of legal and financial decisions regarding your future.

I can not look at this situation from your perspective. I am not at risk, but my husband has HD. The best piece of advice I have seen here is hold off on being tested until you are really sure that is what YOU want. It is a Pandora's box which cannot be closed again. One positive thing you can do is live your life as fully and healthfully as you can at this time. Take good care of yourself. Stress, diet and exercise have all been linked to onset of symptoms. I personally think my husband's positive outlook and advocacy activities and involvement in HDSA have brought a quality to his life which he might not otherwise have.

There are some on here who have turned their testing experience into a positive thing. Matty Ellison, who is one of the founders of HDYO. Katie Moser speaks about her HD story in advocacy series nationwide.

Take time with your decision.
Patty



Edited 1 time(s). Last edit at 03/27/2014 12:40PM by patty c.

My daughter was diagnosed with a CAG of 60 at age 20 and used it as an incentive to go on to graduate magna cum laude from college. She simply wanted to accomplish it despite having juvenile HD. All these years later, she is refusing to give in and is still as sharp as ever.

Thank you so much for your response Patty, i do appreciate it.

Wow Howard, that is inspiring. Thanks for sharing.

Don't ever give up and be supportive.

It's tough no matter how you slice it. I don't have a family history being the first diagnosed and I am thankful for that yet my family and children have to bear this burden. There have been some excellent post about testing and I recommend searching them. Being positive, even if you don't feel positive is a help to me. No, it doesn't change your thinking but helps with the burden somehow.

Testing is your choice. From someone else's perspective I don't think they can imagine what it would mean to test positive. In your situation it's something you have to live with every day no matter what the outcome of testing or if you choose not to test at this time.

I read a post about this on the forum and it made a lot of sense. Paraphrased it read; If you tested would it change anything. I had to test to find out what was happening to my body. It was actually a relief for me but only in some ways I was to learn. Had I not tested, each day would still be filled with questions about what was wrong with me. Granted there is nothing to be done at this point but somewhere down the road there will be.

I have the best family and friends. There is nothing they won't do for me. They want me to stay positive and focused on getting better which I know won't happen. . In their defense I think there is some denial on their part but I sort of understand that. It is love and caring for me and a desire to see me change no more.

It is from the post here I have learned and been directed to many places to find information. That information granted does not mean I will present just as another does. It does mean I may be able to explain some of my feelings and symptoms. That is where some of my hope comes in.

Howard's post about his daughter should be inspiring to us all. In fact as you read post there will be a lot of inspiring thoughts. There are also those that are inspiring in that sense but it is that persons journey and they are looking for hope and answers as well.

I have suggested several times "talk therapy" here on the forum. It helps me and gives me a sounding board for what I am feeling. It is certainly not a one visit fix but rather an ongoing therapy.

Good luck,

Mike

Thank you Mike, this is helpful. Most days I stay positive and then sometimes it just hits me like a ton of bricks. It makes me angry to see my mom like this and angry that it could be me some day or my daughter. My husband puts it into perspective for me as he lost his dad when he was 17, he reminds me how lucky I am to still have my mom in my life and he is right! Just trying to live every day to the fullest and not think so much about tomorrow. Thanks again for sharing your story, praying for a cure!

None of us come with a warranty. I certainly wish we did, I'm good with warranties. I have no idea what it is like to see a parent or relative being taken by this disease. I lost my Mother at 93 and it was sudden; my sister about the time I was diagnosed, only not from HD. No matter, seeing those we love slip away is not inspiring. Keep the faith, be positive and share your concerns with a community of loving people.

I cannot thank Marsha and Steve enough for this outlet. I've looked at other sites and this is where I belong. Good people, all of them.

Mike

If you do decide to test, please make sure that you are aware how testing positive could impact your ability to have life insurance. I'm not in the same country as you, but I can't get any life insurance because I tested positive.

I'm praying for you.

Kathleen,
I am so sorry to hear that, my heart reaches out to you. I was wondering about that, i already have life insurance so not sure how it works for sure. I dont think my mothers life insurance was impacted but certainly something i need to look at prior to getting tested.

Thank you for your response and lots of good thoughts and prayers goingyour way.

Check out long short term disability and long term disability. It is usually less expensive if through a group plan. I don't know your age but Social Security disability taken in earlier years is substantially different from what you would receive if you work to retirement and get SSI instead of SSDI.

Mike