Hello my name is Mindy. I have not posted on here much but just need to vent a little... My Dad was diagnosed this past summer with HD. I am 29 and I have 4 boys under the age of 10. Life has been super stressful this past year with my Dads diagnosis plus my husband was diagnosed with brain cancer about a year ago which is still an ongoing battle of ups and downs. I work full time and have been struggling this past year with a lot of anxiety, trouble sleeping and a little bit of depression. I am on meds and see a counselor which has helped a lot but I still find that I have days where I am really down in the dumps. I KNOW I will be getting tested because in my mind, I have to do it for my kids. But I am def not ready and don't know how I will ever feel ready to do so. It is so terrifying to even think about... I feel like I want to puke even thinking about walking into a room where someone holds my results in their hand... I feel like I would need to take a Xanax or something to even begin to go through with it.
I think my major struggle is dealing with both of these life changing, super stressful situations at the same time while trying to take care of my husband, make sure my Mom is OK dealing with my Dad who is declining quickly, take care of my kids and just keeping myself together.... If I tested and got a negative result that would lift a huge boulder off of my shoulders so I could focus more on my husband and my Dad... but if I tested positive.... I'm not sure that I could function anymore. I know there's no rush to get tested but I am such a planner that not knowing whether I have this disease makes me feel like I cannot even plan anything... So hard.

Mindy,

I'm usually in favor of testing, but I think you might have too much on your plate right now. Maybe you could set a condition that has to be met, like your husband's cancer has stabilized, or you feel totally confident about your Dad's care.

A very wise friend once told me something that has helped me through difficult times. He said that Life will either go North or South on you. You can do a little to deflect it's impacts East or West, but you can't change the overall direction by worrying about it. If the direction is South, be patient. It will turn around.

I guess that's called Fatalism.

Vent anytime you like. You're with good friends.

Will

Wow Mindy. That's a lot on anyone. I don't know how to say it any better than Will did and he's a champ.

Hang in there and I believe you will know when the time is right to test. It's tough when you feel the need to be there for everyone except yourself but you are needed and things will get better. It's has to be overwhelming. Keep up the talk therapy. I believe in it.

Keep us posted.

Mike

Mindy, I am probably around your Dads age. I am 60. I have a 29 year old and a 27 year old son. I got diagnosed 7 years ago. I am positive. My Mother was diagnosed by symptoms. She was not going to be tested since there was nothing they could do for her. I got angry because of having children who did not have any children of their own yet. I insisted that she get tested so I knew. She did and thus I did. It has now been over 7 years since I have known my results, CAG of 39. My Mother died last year. In all of that time I have not been able to find the words or the right time to inform my sons of this dreadful disease. My oldest was married this past year and I still have not been able to tell him. What I am trying to say to you is don't be so sure that you have to be tested for your children. That burden is much greater than anyone can imagine. I keep praying that there comes a treatment or better yet a cure so I do not have to share this burden with them.
I wish you, your husband and your family all the best.

please tell your children (at least the one who got married) that they are at risk. They have the right to know so that they can make plans for their future. What if they want to have children? if they are at risk, they could go through IVF so that their child won't inherit it. but if they pass it on and find out that you knew. can you imagine what that will do to your relationship? I know people in that situation and they will never forgive their parents for not telling them. They have cut all ties.They are adults; they have the right to know.