Hey Mikee, I tested anonymously. Found the testing center link through the HDSA website, and started calling the ones nearest to me. The 3rd one I called does do anonymous. I'll PM you which it was. Publicly I'll say that it sounds like testing is the SMARTest thing for your son to do (after getting Life, Disability & LTC insurance or being in a position to take advantage of militaryby smiling sara - Huntington's Disease Support Center
I tested 3 years ago, and I totally fell into this category: bluedaisy Wrote: ------------------------------------------------------- > a guest speaker said, "You know you > should test when the stress of not knowing is >interferring with your ability to live." -------------------------------------------------------- Yes, what a great quote! I had just woken up &aby smiling sara - Huntington's Disease Support Center
I haven't heard the 50-people rule for health insurance, but yes, it's the life, disabilty & LTC that you need to worry most about. Lately on health insurance forms, it has specifically asked you to exclude genetic info, due to one of the more recent laws (past couple of years, GINA?). If you have a parent with diagnosed-HD, you may have a very hard time getting approved. But since my Moby smiling sara - Huntington's Disease Support Center
Great job Will! Even though my congrats is kinda late, I do hope you're still basking in the glory of that great accomplishment!by smiling sara - Huntington's Disease Support Center
Hello. I'm so sorry for your reasons for being here, but so glad you've found this place. I'm also gene-positive, and the time right after my result was absolutely the worst time of my life. But I promise it gradually gets better with time. There's every reason to believe that something soon will drastically change what it means to have HD. There's nothing to say that you will have as haby smiling sara - Huntington's Disease Support Center
Seriously, no replies??? Sorry about that! I've gotten mine from Pilgrim's Pride. I get their Ubiquinol, which is supposed to be like 7x as absorbable as regular. It's still very hard to absorb. Better absorbtion for younger people, and more important if you're on a statin (cholesterol-lowering) med that lowers your natural CoQ10 anyway. Vitamin E also improves absorbtion, so I take thatby smiling sara - Huntington's Disease Support Center
Aren't there ways that they can have HD-free kids without knowing if she has the gene or not? I don't have time to find the link right now but hope they can get that info. I know that doesn't solve the concern about a child growing up with a parent with HD, but as long as the likely-healthy spouse has their eyes wide open about the possibility of caring for both child & spouse, and the HD-pby smiling sara - Huntington's Disease Support Center
I will PM you. I tested anonymously and think that was the right decision for me. It a little over $1000, similar cost to non-anonymous testing centers that I called. You pay with money orders, and just need a real phone number so they can contact you. Best wishes all around.by smiling sara - Huntington's Disease Support Center
Adding my well-wishes! Take care, Barb!by smiling sara - Huntington's Disease Support Center
Yes, Congratulations Marsha & Steve! Hope you had a nice celebration along with the wedding, whether big or small.by smiling sara - Huntington's Disease Support Center
I'm so glad you were able to get back to running so quickly after your surgery! Thanks for sharing all this. Sounds very exciting! Also, as I was re-reading "Running from the Devil" yesterday, I caught a prophetic line to the affect of "I'll be the first to volunteer for gene-therapy or any other exotic treatment". I don't know if you were "first" on this one,by smiling sara - Huntington's Disease Support Center
I'm gene-positive, and can't stand multiple noise sources at once, or even noise + concentrating on something else. TV, someone talking on the phone nearby, AND trying to concentrate on the computer is way too much. Laundry or dishwasher noise can upset the equasion too. Also, if I'm driving & trying to follow new directions, I need to turn the radio off. And I listen to music at lower voby smiling sara - Huntington's Disease Support Center
Welcome. I'm gene-positive too. And trying to live positive. Glad you seem to be working through it, as well as anyone, or even better. And thanks for sharing the positive attitude; that can be contagious.by smiling sara - Huntington's Disease Support Center
I just took the opportunity to re-read Will's story. He's among the most inspirational people here, in my opinion. I can relate to so much of it, feeling better after my positive result (43) once I had ordered my supplements & signed up for PREDICT and knew I was doing all I could to take as much control as possible of my situation. Testing will not change whether you have the HD genby smiling sara - Huntington's Disease Support Center
I too, am sorry that you're not negative. And I'm personally familiar with how hard a fresh non-negative result can be (CAG 43, 2yrs ago). Let yourself grieve the loss of your dreams of a life without the worry of HD. But then, as Marsha said, I hope you come out fighting, and find a way to live your life with hope. Even without an all-out "cure", you have a contraction on yourby smiling sara - Huntington's Disease Support Center
Will, I wouldn't mind reading your long post right here! It is so nice to see such positive & promising news, and it's not surprising that Will is participating & sharing it. Good for you, Will. And thank you. Both for the good you're doing with your participation in this & other things + for being such a positive voice in this forum. How is your foot from the surgery, by theby smiling sara - Huntington's Disease Support Center
Good luck. And I hope you can find some positive distractions from thinking about the results. Hang in there. And remember that you are not changing your/your husband's FUTURE, you are just changing your KNOWLEDGE, so that you can best plan your lives.by smiling sara - Huntington's Disease Support Center
I PM'd you about my anonymous testing. Anyone else is welcome to PM me about that too. I've avoided putting the location on here for fear of identifying myself. I'm "in the closet" mostly due to insurance reasons. Obcession AND paranoia can both be symptoms of HD (I exhibit both!) or they could not be. I believe I am symptom-free, despite my positive genetic status and a few quirby smiling sara - Huntington's Disease Support Center
Wow. Sounds like a pretty serious relationship for 17. Sounds like you didn't go looking for it, but have found an amazing connection. I met my now-husband when I was 14, he was 17. We married at 24 & 26, and have been married 11 years now. And as Michael J Fox once said, I would definitely say my life has been "front-loaded". My grandmother had HD, but she got it at a relby smiling sara - Huntington's Disease Support Center
Sorry. Yes, you did say widower, not widow. Grown kids & a couple of grandkids, how nice. Glad you found a direction to go with a doc. Keep us updated whenever you feel like it!by smiling sara - Huntington's Disease Support Center
Nice to "see" you. I'm also looking forward to our Italian family's Christmas Eve celebration. Hope you enjoy yours too!by smiling sara - Huntington's Disease Support Center
Yep, but get the first couple of pieces, and the rest will likely come a little easier.... How long ago did you lose your husband? Do you have any young or grown kids, or other family/friends around as support?by smiling sara - Huntington's Disease Support Center
Very cool!by smiling sara - Huntington's Disease Support Center
Just want to re-state that yes you ARE worth it. Docs can be a pain, and it can feel like it takes a lot of effort to not even get very far. But unfortunately you really do have to be pro-active as the patient. If you find a neurologist that specializes on Parkinson's or Huntington's, it may be that much quicker to rule those in or out. And that same specialist may have experience on wherby smiling sara - Huntington's Disease Support Center
I'm so sorry for your health issues. It must be frustrating to know something is wrong, but have docs so far unable to help figure out what it is. People with HD usually have a family history of it; do you know if either of your parents have/had similar issues? It is also something that should be easy enough to rule in or out, with the genetic test. ANY neurologist can do that test for yoby smiling sara - Huntington's Disease Support Center
I'm so sorry. My Mom won't go to the doc either. And you sound a lot like my dad when you say you thought it would be easier not to argue even though something was against your better judgement. I'm so sorry it's especially hard as he obcesses about finances & taxes. Sounds like you could use a break if you could somehow figure out how to get one. Or regular smaller breaks....by smiling sara - Huntington's Disease Support Center
You may change your mind about whether you need more Life, Disability, or LTC insurance. Or if there is a job change or early retirement, you may have to apply again for health insurance. GINA theoretically protects you in the health insurance & employment areas, but it is yet to be tested. Whenever you buy any future insurance you will typically have to sign a waiver to release all &quby smiling sara - Huntington's Disease Support Center
I tested anonymously, and it only required 2 total visits, about as minimal as I've heard of. I will Private-Message you with the location - you can get to those if you look at the upper right corner of your screen. I also researched the options for just sending in a DNA sample, but I could not find any that included HD in the list of things they tested for, because of the "guidelines&quby smiling sara - Huntington's Disease Support Center
Oh yeah, now I remember that part of "Obama-care". You can't be denied, but there's nothing to say it won't be prohibitively expensive. I was watching & rooting for the public option/Medicare-for-all type of thing. Well, I think I've made my decision. It would be NICE to solve this now, but it's hard to solve something that's probably 15-25 years away, when so much can changeby smiling sara - Huntington's Disease Support Center
I'm gene-positive for HD, and my mom developed undeniable symptoms in her low 50's. I've gotten theoretical rates for individual health insurance, aging myself 20 years, when I think I might retire (50's). But there's no way to know if I'd even be accepted, once I filled out an actual application. I have a job OFFER at a University, where I could stay in their group for health insuranceby smiling sara - Huntington's Disease Support Center