I had my long-awaited anonymous predictive testing appt yesterday.
I'm tentatively scheduled to go back 11am Feb 26 for the results (they'll call me to reschedule if the lab doesn't get the results back in time).

Feb 26 at 1pm is also our appt. to accept our LTC insurance in person at our agent's office. We were notified last week that it was approved (great peace of mind to know this before testing), but we had to schedule the in-person acceptance meeting. Then we have 30 days from acceptance to cancel for a full refund - will probably do that if I test negative.

The appointment was interesting.
I was looking forward to the 2hrs with the Psychologist, but it ended up being less than an hour of actual talking, then he talked to my DH for about 10 more minutes while I started one of those Scantron Psych Tests which took most of the 2nd hour. I thought we were going to talk more after the test, but we didn't. I guess I proved (and DH verified) that I was not showing psychological symptoms of HD, and could handle the results of the genetic test. But we didn't get quite as in-depth talking as I expected.

Then 1hr with the geneticist. She had some good illustrations of the genetic facts of HD, including CAG repeats. I had tried to explain that stuff to DH ahead of the appt; I think he grasped it about 75% when I taught it, but the rest of the way when he saw her illustrations.

I talked with both about how Mom is in denial, and both agreed that trying to be there for her, but NOT breaking her denial was the best course of action.

Both asked if we HAD children (no), but neither asked if we had plans for children (no). Neither asked directly what the test results would mean to us (though psych asked a lot about how I handle stress - I was honest that it's a combo of running and sometimes a glass of wine before bed). Both referred me to the HDSA; I said I already had the national & local sites bookmarked; thanks though. I told both of them about THIS forum & the Lighthouse, and about ACR-16 and some of the other promising treatments/preventitive measures, and about the heightened immune system with HD. Both seemed surprised that I'd been able to find guidelines here about insurance, and had all that in place.

So not only did I "pass", but I "aced" it.
Last stop was the lab for my blood draw.
Now I get to wait. But I do have some peace of mind that things are finally in motion, after I've been wanting to do this since October.

Then after I get my results one way or the other, I think I will be able to a) do what I can for myself if positive with supplements and maybe trials; b) cancel the LTC insurance if negative; and c) either way after I have my own acceptance of whatever the results are, I'll be able to put it aside and focus more attention on my mom.



Edited 1 time(s). Last edit at 02/16/2010 09:40AM by smiling sara.

I'm glad thing went so well for you, Sara. I was actually waiting to see how it went for you 'cos I remembered you had your appointement one of this days. But I must say I was sure you would nail it since it seemed to me you were well prepared for this.

I totally can relate to how you feel a certain relief things are finally in motion. That's how my husband felt, too (and me too). Some of us just prefer to deal with this part of the process so we can move on and have a life. I wish you will continue feeling the same way when you get your results and, of course, I really wish your results will come back negative.

Luz.



Edited 2 time(s). Last edit at 02/16/2010 10:42AM by Luz.

Thanks, Luz. How are you and your husband doing?
Still as great an attitude as when you last talked about the results?
I imagine that even with the best attitude, there can be difficult days...? But then I imagine that at some point you get "over the hump", and things re-normalize to some degree.

I also realize in all of this (or in any other trying times that life brings), what a blessing it is to have a great marriage. It seems like you and your husband really have that. You're lucky to have eachother.

We all hope the best for you and your family!

I don't know if canceling the LTC insurance is a good thing if you are negative.

LTC works for a whole range of other issues besides HD you know. I am not at risk and I keep it.

Sara,

You get a triple A for Attitude. You'll be fine whichever way the result goes. Best of luck.

Will

Thanks for the LTC suggestion, Fred; we'll think about that....

And thanks for the encouragement Will! If I am positive, I am going to follow your nutrition/supplement plan from "Running from the Devil"! Sorry I don't see myself doing ultra's though! I have one regular marathon under my belt, but the Half is my favorite distance.



Edited 1 time(s). Last edit at 02/16/2010 03:31PM by smiling sara.

Sara - It will be the longest wait of your life!

My thoughts are with you........

jl

We're still doing fine, Sara. I'm actually impressed with my husband's reaction. The movements at night, the sleeping problems are practically gone (our trip back to our families helped him a lot with that, too). That's how I know he's doing fine, since he's just not an expressive person who will tell you how he's doing. But I observe him and once in a while ask him some questions to check and I feel he's doing well.
I'm the one who's not that stable, so I have my days. But, in general, I'm ok and I try really hard to be alright for him.

I guess the fact that we're hopeful about the future helps a lot. I really don't care if that sound naive: as long as it helps us to go on with our lives, I'm fine with being naive.

And I think you're right: having a good mariage helps a lot right now. But that's also what makes me feel sad about the future, if things don't change in the next few years: to think I will lose what we have.

Anyway, thank you very much for asking, Sara. You'll be in my thoughts this days. Remember we're here for you if you need us.



Edited 1 time(s). Last edit at 02/17/2010 08:25AM by Luz.

Sara, you are a lovely person and I'm sure everyone is wishing good news for you.

I am thinking of you, Sara...

Brett T



Edited 1 time(s). Last edit at 02/17/2010 11:34AM by Brett T.

Sara - you did GREAT! It is such a weird, weird feeling. But I think I felt more at peace once the blood draw was done than before. I will tell you that I was rather nervous right before I got the results and tried to stall a little bit. :-) Hang in there! Just remember that either way - you will be okay and can handle it. You're in my thoughts!

Linda

Thanks everyone. Yes, I really think I WILL be "OK", either way.
Though I reserve the right to have temporary periods of not be OK if it is positive, I know there will still be a lot to look forward to in life.



Edited 1 time(s). Last edit at 02/18/2010 03:12PM by smiling sara.

You have done well to get that done . db