Did it, worked, absolutely beautiful son. Did it again, and sadly there was a different genetic issue (our luck is just terrible), and we lost the pregnancy. Thinking about doing it again next month. If none implanted, you may want to consider adding PGS where they scan the DNA for other genetic problems that can affect the implantation rate or pregnancy.by noreaster - Huntington's Disease Support Center
Yogamom- Hugs to you. I'm so sorry to hear about this.. Here is my feeling - if you can find a way, try to be gentle in your approach with your husband. His denial is definitely frustrating, but the fact of the matter is that follow up may not result in treatment, so pressing for a followup may not even yield a result. As of now, there is no treatment that (aside from clinical trials) thby noreaster - Huntington's Disease Support Center
Will- Turning into the nightly news tonight, there was coverage about the marines marathon and will! Was that indeed you? Congrats on the race and the nice coverage.by noreaster - Huntington's Disease Support Center
Hang in there Barb! Life is so unfair. BUT- You help and guide so many people on this forum. Springtime is coming, and every little venture outside has some value. Take it slow and easy, and try to enjoy the little things if you can. xoxoxby noreaster - Huntington's Disease Support Center
Barb- I agree, Running's posting is kinda worded in a condescneding manner. But maybe we can give him some lattitude, knowing he is writing in a second language?by noreaster - Huntington's Disease Support Center
Sarah + Molly: My thoughts are with you both. My husband and I were in a complex spot not dissimilar to yours. Let me know if either of you need a phone call or a private message.by noreaster - Huntington's Disease Support Center
Hey guys- Looks like the Creatine results are beginning to come in, very positively: P.S. Sorry I've been out of touch for a bit - we welcomed a new baby via IVF/PGD on Christmas Eve!!by noreaster - Huntington's Disease Support Center
Sangamo BioSciences Announces Presentation Of First Demonstration Of In Vivo Efficacy Of Novel ZFP Therapeutic(R) For Huntington's Disease Marsha- looks like they used a mouse model here. Will they need to do primate studies or move right to Phase 1 clinicals?by noreaster - Huntington's Disease Support Center
Dear Concerned Partner - I agree 100% that tabye has to be supported, and I myself do not have any problems with her choice whatsoever. The thing about this board, is that people are coming at this from zillions of angles. Shar is the partner and caregiver of a loving husband who has managed to care for his HD for an extended period of time, and views her marriage as very positive, anby noreaster - Huntington's Disease Support Center
Hey there everyone- I think tabye sounds pretty firm in her decision, and is asking more about similar experiences than advice. Good for you Tabye. Nothing with HD is easy, but you need to chart the course with your life as best you can. To that end- I am at risk and we chose to do IVF with PGD. We had fertility issues anyway, so insurance covered IVF and we paid for PGD. That said,by noreaster - Huntington's Disease Support Center
hey jennie! So we did IVF with PGD so our needs were more of a doublecheck than a first pass, but this is what was true for us in the US: FREE CELL Right now free cell DNA is only used for trisomy detection (downs syndrome, etc). there are no services offering to isolate and sequence fetal DNA for those purposes. its just a blood test, simple. CVS We had CVS as a doublecheck, but itby noreaster - Huntington's Disease Support Center
hey gang- came across this solution for adding to keys, wallets, important stuff. My HD+ sibling loses those all the time, and now we can set of an alarm which beeps and locates the item... Kind of a great idea for the search-inhibited.by noreaster - Huntington's Disease Support Center
Welcome blh! You may want to look into getting some insurances (disability, long term care, life insurance) before the testing process. These things are more difficult (sometimes impossible) to get should you test positive... Good luck!by noreaster - Huntington's Disease Support Center
Found this today.. Marsha, am I wrong or does this seem to combine various approaches to neural regeneration into an exciting possible treatment..by noreaster - Huntington's Disease Support Center
hey mikee- I have been in a similar position to your son - let me know if you would like to PM, if he needs someone to talk to. There are lots of options for him - IVF with pgd, CVS testing, or just proceeding forward unhindered (as you refer to above).by noreaster - Huntington's Disease Support Center
I wonder if there is anything the HD community can do to help... Heartbreaking story...by noreaster - Huntington's Disease Support Center
I think unilateral statements are inherently very dangerous. Especially about something so complex as parenthood. I grew up with an pHD father. He has no symptoms at 65. At least any that a neurologist can detect...by noreaster - Huntington's Disease Support Center
I did. At the time, however, my parents were also not tested. A sibling had tested positive. But again, I dont remember any questions about my parents. Or sibling. I got it from Northwestern Mutual.by noreaster - Huntington's Disease Support Center
Hey all- I believe that GINA (the genetic non discrimination act) DOES NOT protect you from being denied long term care or life insurance. There is some protection for health insurance. This is what I recall.. best of luck. When I applied I do not believe they asked about parents' diagnoses.by noreaster - Huntington's Disease Support Center
Obama Seeking to Boost Study of Human Brain Interesting news out of Washington... I hope this helps push treatement for HD forward. Marsha, do you think this will be helpful? Is there any lobbying the HD community can do to get grant monies flowing in our direction?by noreaster - Huntington's Disease Support Center
Wallettce- Are you safe? Do you feel unsafe? Is there someone that can stay with you? Remember - your safety is priority one. You cant help someone if you are injured or feeling threatened.by noreaster - Huntington's Disease Support Center
mikee- So im at risk, and not ready to test. I did get Long Term Care and Life Insurance put in place in case i change my mind. I also upped the disability plan I have at work and made sure its portable (I can take it with me once I leave my current employer). The process on those took about 60 days, and I think its worth it to know that if I do test positive, my husband wont go completelby noreaster - Huntington's Disease Support Center
Marsha- I was browsing today and ran across this: Which is basically the result of some mouse model testing of an existing med: Pizotifen. There were some other articles that had similar results for things like Sodium butyrate (although there is mixed reviews of HDAC inhibition, yes?) and a few Alzheimers compounds.. The results on Pizotifen looked interesting (and btw one of the side eby noreaster - Huntington's Disease Support Center
hey everyone! Sara- let me first say, Im so sorry to hear about your news and i wish you all the best. however i find elements of this thread mildly toubling. Here's the thing: you guys say you urged your MIL to get tested, although she has no symptoms (other than depression). I think this is complicated, but Ill go there with you because perhaps her adult children would like to knoby noreaster - Huntington's Disease Support Center
ok. so this is a different situation, but Im going to offer a counterpoint. When I found out I was at risk, I told a few people, and an aquaintance came forward and let me know they had a genetic disease also (they had tested and received a gene positive result). Talking about it has been so helpful for me, and also for them. I was one of the only people who understood what he was going thrby noreaster - Huntington's Disease Support Center
thats an incredible interview, actually. really very smart, and logical, but emotional as well..by noreaster - Huntington's Disease Support Center
looks like there is another possible avenue to try to reduce neurodegeneration..by noreaster - Huntington's Disease Support Center
Fevre- I read your post. I care about it. Its a hard one to reply to. Clearly you are (rightfully) anxious and scared for your sun as he becomes more involved with his father. I bet that feeling is anguish. Its hard to imagine being afraid for his safety, and must be so frustrating that your voice isnt being heard in the legal system. But here is why i didnt reply. Im at 50/50 risby noreaster - Huntington's Disease Support Center
jennie- Im still reeling from my sibling's diagnosis about 18 months ago. I agree with Fevre that this could be a coping or adjustment period of selfishness, or perhaps him unconsciously driving you away. I cant really advise you to stay or go - your life is important, your happiness is important, but so is your boyfriends. Is counseling an option? A trained professional would probablyby noreaster - Huntington's Disease Support Center
heather- the problem with that plan is that if you know you have the gene, and don't disclose on insurance applications, technically that's insurance fraud. if you are caught, its a serious crime... better to get the insurance, cement it in place, then take the test.by noreaster - Huntington's Disease Support Center