I got my results today. Positive.
I knew when she took us to the room, then went to get one more chair, that if the news was good she would've blurted it out by then.

Still processing it. I think I was more prepared than DH, and I feel kinda bad that I did not give him a choice not to know....

Then afterwards we had the appt to accept the Long-Term-Care insurance, which now we'll be keeping.

But now my fight ramps up.
Besides blueberries & green tea that I've already been eating/drinking, I'm ordering my creatine, CoQ10, and EPA fish oil....

Also made an appt w/ my Primary Care Doc, to make sure my cholesterol is under control. And contacted someone about getting into local trials (the ones they're doing nearby don't include the supplements but do MRI's).

No pleasure in knowing now that I am 100% right about my mom.
Especially since I plan to keep my results from my family for the time being. (I want Mom & Dad to take their own path to her diagnosis and even then not to worry about me; and I want my brother to think I'm at peace with not knowing because I do not think he's ready to test with some marriage & other issues).

Besides DH, I've told 4 close girlfriends. So I have all of them.

I'm only 32. Mom is 57, Grandma wasn't diagnosed til 65. And I have the benefit of being ablt to be proactive, so that's what I'm gonna do.

THANKS in advance. This forum has really been wonderful, to be able to share my thoughts & concerns, and read about how others are dealing with similar things. I think the knowledge and comradery here has helped me take this about as well as someone can.

After I order my supplements, we have a weekend ahead of us that is "just busy enough", nothing that will take a lot of energy, but just enough to distract me....



Edited 1 time(s). Last edit at 02/26/2010 03:19PM by smiling sara.

I am so sorry to hear you have HD. I think this is one of the better times to have it because we have meds which can help, and we know that activity and less stress helps, and the cure might be there by the time your problems accelerate. take care
Dusty

Sara,

You were as prepared as you could be for this. I sense great strength in you. You're doing exactly what I did when I got my positive result. Look into the COHORT observational study, which requires only one annual visit. There may be a location near you.

My wife is in the study with me as a control. It might help your husband to be a more direct part of your new and different life. Yell at any of us if we can help.

Will

I look up to you ... I have been wanting to test for HD but I cant... I dont have the strength you have. Your looking at everything in a positive way.. Thats the only way you can look at it. If you ever need to talk holla at me..

Thanks for letting us know. I had been thinking about you today. This is not news I wanted to hear, but think you are brave for sharing it and your plans. You know how to reach me if you would like to talk about your family situation.

-Brett T



Edited 1 time(s). Last edit at 02/26/2010 04:14PM by Brett T.

It's better to know this way... it's no fun being diagnosed clinically, and having to digest it with symptoms. That was pretty agonizing for my wife. She would have been like you... gotten busy doing things that were available back in the day... which is a lot better now! Your husband will digest it too... he will be fine. At worst it's just something you get used to knowing... and you do. Personally I am less disturbed by a pos test... so much is going right in HD and treatments... it means something different than it used to mean. It's still not great news... and I am sorry.... but things are hopeful. If you are symptom free for 10 or 20 years... geez... I think you will be home free. Don't second guess now... this is useful information for everyone. You had the gene no matter if you knew it or not. Now just use it to your benefit... and make sure your husband does too.

I'm so so sorry, sara...
I'm glad you have a nice support system in place. We're here for you, too.

((((hugs))))

Luz.

Sara, I'm sorry about your results, my dad also has a CAG of 43 and he's 53 and is doing pretty well....early-mid stages I would guess. I see alot of strength in you and am so proud of your courage.

Sara, I'm sorry to hear about your results. We're here for you.

Paula

Ah, Sara - so sorry. But I have a feeling you're going to show all of us how to do this. Thank you for sharing your experiences with us. May peace be with you.

Jackie

Sorry to welcome you to the club Sara, keep smiling for a good while yet. I'd expect a lot of medical advances by the time you will probably get symptoms.

Tc, Matt.

[www.hdyo.org]

Sara,so sorry love.If anyone can show you how to get through this it's Matt.A true inspiration!!!!!!!!!!

I'm sorry Sara. You have such a zest for life and a positive attitude. Keep your chin up.

I'm so sorry, Sara. I'm glad to know that you are being proactive. I think you have a marvelous spirit but remember, you are entitled to have a bad day now and then. (staying in bed, chocolates, romance novels, maybe?)

I believe that working together we can make this the last generation to have to worry about HD. We have a fight ahead of us, but we will win it.

Hi Sara - Very sorry about your news. As someone else wrote - it was there now you just know it and can DO something to give yourself the best possible chances - sounds like that is exactly what you are doing. My husband was recently diagnosed and is very early on - we are trying to be as proactive as possible - keep posting what you are doing and we'll do the same - we can all learn/help each other. There is so much hope now! Best of luck!

Awe, big hugs Sara, i'm so sorry, but you're such a fighter. You're going to be ok

Sorry, I didn't answer sooner!

For what it's worth - I'm 61! Also with a CAG repeat of 43.

jl

Thanks everyone.

As far as bravery goes for testing, I guess the best scenario would be if you could motivate yourself to be fully-proactive without testing.
But I needed to know for sure in order to make that investment, I guess. Plus I liked the possibility of knowing if I was negative. But I can totally see why some people prefer NOT to test.

Even with the tremendous hope I have, both for the supplements that I started + near-future treatments to give me many years of quality life yet, I still have a big pit in my stomach. Finally felt up to running again yesterday, and slept through most of last night.

I think the further we get from this, the ability to be proactive WILL at some point outweigh the stress. Just wondering when that will be.

I really appreciate all the support and inspiration of seeing other people living quality lives who are gene-positive or even somewhat symptomatic, both about my own situation, and as I transition to being more helpful with my mom.



Edited 1 time(s). Last edit at 03/01/2010 07:09AM by smiling sara.

"I think the further we get from this, the ability to be proactive WILL at some point outweigh the stress. Just wondering when that will be."

I think about a week from Thursday...

Really it's been proven over and over, people handle what they do know better than what they don't know... even if it's bad news. The average person is built to cope. You are above average.

I'm sorry to hear about it too Sara.

You have a long time between now and then. Medical science has a long time between now and then too.

There can be worse things. You could be blind, but you are not. You could be paralized, but you are not. As long as you can get up and enjoy your day, life is okay.

Because if you look in the paper every day, you will find someone that can't do any of that anymore.