Well, we got the bad news today that I did inherit this from my father. CAG 41. but no symptoms as of yet, and I am about to embarq on a full force front to delay this disease as long as possible.

Has been a very tearful day. Being symptom free at 50 kind of lulled me into a false sense of security that I didn't have this horrible disease.

I'm getting ready to call about the PREDICT HD study to enroll...

We had our talk with my daughter and her fiance....so sad that the year they're getting married they have to worry about this.

Prayers.....

Sara

Oh Sara, I'm so sorry. The next few days are really going to suck; probably even worse than the last couple (before your results). But I promise, at SOME point, the stress of having the gene, will be not-so-different from your recent stress about your risk.

Like you, PREDICT was one of my first calls...5 months ago now. It will help to be proactive & do positive things like that.

AND CAG 41 is not so bad; look at Will, just one repeat lower and running ultra-marathons at age 64.

How soon are you going to tell your daughter? I had to get a handle on things before I told anyone else. But she still MAY be negative! And/or she may handle it better than you think.

(((HUGS))) Let yourself have your low time now, but limit it.

So sorry Sara!!! My heart is aching for you - it brings back all the memories of getting my husbands diagnosis last October.

Let yourself grieve and mourn as you need to but take strength from all those on this forum who are living positive and doing well.

My husband is doing better now with the diagnosis than he had in years -for him the stress of having the gene is actually much less debilitating than the stress of not knowing.

I's so so sorry, Sara...
Take care,

Luz.

I am so sorry, Sara. Take some time to feel sad about this result and then come out fighting. I'm glad you are calling about participating in Predict HD. Remember, this community is not waiting for treatments - we are working to bring them about and to shorten clinical trial. The present with HD is better than the past was and the future is going to be better.

At the HDF conference, I saw a video of a 94 year old woman with a 41 repeat. She was still pre-manifest. I know that's an unusual case but it's what I hope for you as well.

Very sorry to hear this. Like Hope says it brings back the heartache memories we went thru hearing our positive results. I also agree with Hope saying take time to mourn, but also take strength from those on this forum and where ever else you can find comfort.



Edited 1 time(s). Last edit at 08/20/2010 10:05AM by eve.

Everyone,
thanks for the words....they really do help. They validate the mourning I'm going through...and the feelings I have. We told my 19-year old daughter immediatly because she knew I was going for the test.....she has knows for a couple of months that something fishy was up...so we came clean. She was imagining much worse things.

As for the 41 repeat, it's the exact same as my dads. So it didn't expand from his which I guess is something that can happen. Also, my dad is 82 and didn't start showing signs until just a few years ago. That's all of our "saving grace" i think is to see how well he's been. I plan on fighting this like mad...once I wallow for a few minutes here. ha ha

I love this sight....I had read about the runner and the "cocktail" he's on...I think I'll start that this weekend as well. Have to find an exercise I enjoy because I'm not a great person with regards to exercise....
THanks so much for your words...they really really help...
Bonded...
sara

I am so very sorry....going through the testing process myself, I feel for you! I get my results soon....take time to let it all settle. Remember that things always find a way or working out and you will be okay, I know it doesn't seem like it at the moment, but you will!

My eyes filled with tears as I read your results...I wish you the best in your journey....and remember you are not alone!

-Krista

I am sorry for your diagnosis. Everyone here has been through the different stages. I was 57 when I began having symptoms. I am now 61 and fortunate because my symptoms are minimal. I have not participated in the PREDICT study I participate in the Co-Q 10 study (2 CARE) instead. I believe in being proactive and I have a very nice support group. Please feel free to ask questions at this site they are the best!

Nora

Well. kinda sucks, but you do have that family history thing going. Maybe we can join forces at 82 , you with HD and me with AD... But if it's a date we better write it down somewhere or we will forget...

Seriously, you did a good thing telling your daughter. There is no good time or right time. The time always comes though. She will have ways of getting a lot of perspective about it that a lot of us didn't have the chance to do. How did she take it?

Hi Sara,

I'm the 64 yo runner with no symptoms. Your attitude is great. The fighters like you, Nora, smilin' sara and I are keeping the beast at bay while waiting for a cure. We are going to WIN!

Will

I am so sorry to hear of your positive results Sara. It has been almost 1 year since my son tested positive (he is 31 showing symptoms). Please know that alot of us are praying for you. I am also so glad that you are going to put on your boxing gloves to fight this, it is so much harder once symptoms start. Keep coming to this sight for support, hugs & advice. Let us know how the supplements go.

Hi Sara,
I am sorry to hear about your results.(my prayers are with you) I am getting my blood drawn on 9-7. I hope I can be as strong as you.The folks that partcipaate in this forum are true inspirations to me.

I will also have to explain to my son about our results. My twin brother and I are going through this process together. My son is 26. I haven't even explained to him about his Grandmother yet.(She has hd) They have not spoken in over 2 years. He was very upset about her continued verbal abuse. None of us realized why she had been acting in this manner for years. Now we know. HD!

I have been waiting for our test results before I explain anything to him. My son is the type that would go on the internet and search this disease. I don't want him to realize just yet that I am at risk and possibly him too, until I have more answers. I hope this is the right choice, to wait....

If my brother or I test positive, it will be extremely difficult to tell him. I can use all the advise and suggestions anyone wants to provide......Again I am sorry for your results and I pray your hd mirrors your father. Take care Paula

WILL!!!!! I can't find that article now...please DO share the recipe for your success....I know there were some vitamins in there...can you share those here? I would love to learn your concoction...thanks SO much for posting! I feel like you're famous.

Eric, my daughter Laura is the reason I tested now. She is engaged to be married in June 2011. When they got engaged I thought..well, okay, here we go. I wanted them to have the choices ya know? So, this morning, when I came back from the geneticist We had her fiance here too. He's amazing support for her and has the best outlook/attitude towards life that I've ever met. We all said "Oh Shit" (pardon my french) ha ha...and then kind of sat on our bed and talked. The possibility for the positive result has been there on allof our minds so everyone, although seriously disappointed, has been ready for this "worst". Talking to the 16 year old will be much tougher...she hasn't been here this weekend. So we're talking to her on Sunday. She's at that age where the world sort of revolves around her so when she stops spinning and settles in for a moment we'll talk to her too. Eric, it's a date...32 years from now you HAVE a date...but what's AD?ha ha

Everyone has a story don't they...I feel like I"ve been on this journey since my dads diagnosis 4 years ago, but the real journey begins today.

So glad I have my faith as well...Really leaning hard on God today.

I've called and gotten registered for Predict HD....Iowa here I come!
Sara

Sara, I'm sorry to hear about your results but am glad you are here with so many people to support you and that you are ready to be proactive.

Paula

Awe, i'm sorry, but you're going to do great (((hugs)))

Sara - Here's my current regimen.

Huntington?s Disease Specific
? Creatine 20g ? 10g morning, 10g evening
? Wild Blueberry Concentrate - equivalent of a cup of berries
? Pomegranate Concentrate ? equivalent of one fruit
? Fish Oil capsules - 3 a day with meals - 1,800mg EPA total
? Vit E - 400 IU - morning
? Choline - 350mg - morning
? Trehalose ? 10g morning

General Purpose
? Multivitamin ? morning
? Vit C - 1,000mg - morning
? Glucosamine sulfate - 1,000mg ? morning
? Calcium 1,350mg, Magnesium 270mg ? morning (2 extra strength Rolaids)
? 81mg aspirin ? morning
? One Mini-Mounds bar ? morning to lessen effects of high dosages of creatine (loose stools).
? One Phillips Colon Health capsule ? morning to help with loose stools

Medications
? Testosterone Replacement Therapy ? 7.5mg AndroGel daily ? Not HD related. Started 2009.

Hi Sara- I'm so sorry for your results, I was really hoping you would test negative. This is a great support site. I also have been following Wills regimen and have no physical symptoms at age 47/CAG 40. I too, rely very heavily on my faith, there is comfort in knowing God is in charge. Lori

Sorry to hear of your positive result. HD is a long long disease for most people. Before the test we had a lot of self evaluation and family consultation and push hard to have fun and money earlier in life before the hd years. I had cervical cancer in my late twenties which taught me to smell the roses and grow them too. My daughter who I carried at this time also has cervical cancer and I feel worse about the cancer than the HD because it is painful.
I generally do not drink alcohol and feel the HD brain does worse when one drinks.
I have played the piano for 53 years and I think any neurological workout which makes you stay at the same level as yesterday is valid. I also do aquatics for movement disorders twice a week, although my current class is only a compromise but walking in a therapy pool takes my balance from 4 to 1. Unfortunately nobody is doing research on aquatics. I also smoke and start each day with total HD which prevents swallowing and speaking.
Take care.
Dusty

Sara I too am sorry for your results . My Mom is 82 with HD . db