Long time since I have posted on here, but I was hoping to get some input into thought process for getting tested young. My daughter is 17 and wants to test at 18. My husband had a visit to HDSA center of excellence and two genetic councilor students were in the room and all agree that if she truly wants to be tested at 18 I should start counseling with her know. The doctor said that the yby MRO - Huntington's Disease Support Center
My daughter was in kindergarten when dad was diagnosed. We went simple and added each year. Dad's brain doesn't work right that is why he does this or that, we did not name it and we did not dwell on it. As she grew, we added things,d has a disease and he can't work, because he can't think right and on and on. In sixtth or seventh grade she knew enough and smart enough that when we told herby MRO - Huntington's Disease Support Center
I haven't followed the board in a long time, just wondering if anyone has heard this TED talk? I don't think HDSA is talking about it, sounds to me like the best hope for a full cure. TED shared with TED for Windows Phone and Windows 8 Store apps. Marsha I would love to hear your thoughts?by MRO - Huntington's Disease Support Center
My husbands chorea has gotten so bad it is unsettling for him. I am wondering if anyone has used medical marijauna for chorea? I almost would prefer him do that then use TBZ. Any experienced users? Can you get medical Marijuana if you don't live in California?by MRO - Huntington's Disease Support Center
This is great news and a smart step to go for the social security portion of the parity act only. Congrats to HDSAby MRO - Huntington's Disease Support Center
Yes Dusty Dr. Barbeau was mentioned a lot in the book. He deserves a lot of credit.by MRO - Huntington's Disease Support Center
Oh Pat are you trying to get me in trouble? Don't get me started on all that. I just re-read Mapping Fate. It has a good history on the beginings of HDSA and that was the one of the main reasons for the split. Guthrie wanted to focus on rallying and support families. The Wexler's, the dad at that point believed to strongly in the science. The other problem was Guthry did not fairly distrby MRO - Huntington's Disease Support Center
Carla you can put on the memo portion of your check RESEARCH ONLY, by law a Not for profit has to earmark that money for research only. No money will go to your local chapter. OR you can send your money to HSG, the huntington's study group or HDF, the heredity disease foundation instead also. HDF is the reason the HD gene was found and was originally part of HDSA until they decided to spiltby MRO - Huntington's Disease Support Center
Posguy, For the most part, no one posts on this board to mean, not purposely. The exception to that is the personal attacks that I have been getting from one poster. My post to the thread was not personal in nature, just as your post was not personal in nature. Talking about me specifically, I have posted on this board for years. I have tons of happy stories that I have posted about and heby MRO - Huntington's Disease Support Center
I have been called a bad apple on a recent post because I asked another poster in private to stop posting personal attacks on me. This poster than plays the victim and decides to leave the forum only after taking more personal swipes at me. I am the bad apple? The baby thread has been altered discretely not sure if it was done by administrators or by the poster. The removed text were persby MRO - Huntington's Disease Support Center
The original post mentions that the posters goal is to have 100% HD free baby. There is only one possible way can any argue that human error is not a factor? Noreast brings up cord blood testing, I assume after the baby is born. That is ok? No one should question that? That doesn't become part of the conversation? I am glad the poster can go thru such great lengths to have an HD freby MRO - Huntington's Disease Support Center
I responded to this post because you said you wanted to 100%, that is not reasonable. I added my 2 cents about having children because you are not the only one in this world who feels this is a great thing. I am not arguing that having an HD free baby in not a great thing. I am explaining that it is only one piece of the puzzle. Perhaps you need to know my story, which as HD goes isby MRO - Huntington's Disease Support Center
I replied to this post because I have an informed opinion, not to argue with other posters. You are lucky to be able to have a baby in this age when you can get a nine out of ten guarantee that it is HD free. If I could have done that I would have. 90% is not enough for this potional mom, she wants 100% only way I see that happening is if no baby is created. The is the cold hard truth.by MRO - Huntington's Disease Support Center
If you want to be 100% sure you do not have an pHD baby, than you can't have to not have biological babies. There is always going to a chance for human error. Nor can you adopt because you could adopt a baby with the HD gene unknowingly. To test anyone without there permission regardless of age crosses many boundaries. Whenever anyone talks about bringing HD free kids into a family withby MRO - Huntington's Disease Support Center
A CAG of 45 is not JHD and I suspect my husbands CAG is about the same. I am sorry you are going through this but if you were to talk to my husband I don't think that he would say he was never to be born. He has had a full life and two children. He has contributed to society and blessed me with two children. There could be a virtal cure by the time your baby is old enough. I don'tby MRO - Huntington's Disease Support Center
I quit for three years, never thought I would pick up a smoke again. I picked one up during the fiasco that I went through with the Indiana HDSA and now it is two years of smoking. The stress was so great that I was looking for any kind of relieve, smoking helped. Doesn't seem to help anymore tho. I plan on quiting in the new year, the old fashion way.by MRO - Huntington's Disease Support Center
My husband only had the catastrophic portion of Medicare. I chose this because of Fred's advice years ago. We are fortunate in that our company benefits are 100% paid while he is on disability. Since the Medicare is only catastrophic everything goes through our insurance.by MRO - Huntington's Disease Support Center
Thanks Stacey and Judy, I will have to call the insurance company and see where I call and get some information from the company. I am surprised they would not help you stacey, specially since your daughter was effected too.by MRO - Huntington's Disease Support Center
Thanks Maggie, that is how I envision it going. We have 100 year old house and two landings. I can't imagine it being an easy ride. He would not even have to sleep in dining room, he will have a sep bedroom and a door. I would just have to convert our half bath to a full bath. MIL is concerned that if I take the top floor away dementia will set in. I am not sure that living on one flby MRO - Huntington's Disease Support Center
KT those are all of my concerns too. Also how long they are useful, they are pretty expensive even when used.by MRO - Huntington's Disease Support Center
Carla I did not walk this year because personally I choose not to support HDSA since they choose to not support families. I can not send money to an organization and help pay for the employment of a social worker who broke two of the National Association of Social Workers ethics. HDSA Indiana and National are fine with this social workers job performance and feel he is more valuable than not.by MRO - Huntington's Disease Support Center
I was curious to know what do people who use a home health aid use them for? My husband is mobile and can dress himself but I am looking into using one to help me with care, just not sure what they can help with.by MRO - Huntington's Disease Support Center
A home health care adjuster visited my home this summer to evaluate my hubby for his long term care policy. She suggested that my husband stop using the stairs and move his bedroom downstairs. I am wondering if anyone uses a Chairlift for stairs? Can a PhD use them safely?by MRO - Huntington's Disease Support Center
This is the first year I have not gone to the HDSA walk in Indiana put on by the StopHD group. This year StopHD is reporting they raised $24K for the walk. A huge accomplishment for a grassroots effort. So why is this big news? Besides the amount of money they raised? Because three of the members that run StopHD worked on the Indiana State board. The board that quit in unison, the boaby MRO - Huntington's Disease Support Center
Stacey are you in NJ? and maybe I worked where your husband worked? I am sorry to hear you lost your daughter at such a young age. Prayers to you and your family.by MRO - Huntington's Disease Support Center
My husband went to the eye doctor the other day. It was suggested that he get bifocals. I am wondering if the no line bifocals are a problem with pHDs. They have a middle vision spot that can create motion sickness. The choices are the hard line bifocal, a no line bifocal or a pair of reading glasses and a pair for distance. I think the spare pair won't work.by MRO - Huntington's Disease Support Center
So sorry to hear about your Dad Steve. Prayers to you and your family.by MRO - Huntington's Disease Support Center
I am not sure of the point the site. It's information is redundant and what does young mean? At what age do you get kicked off? How do you know someone is really young? A worldwide website won't address specific needs or problems to someone in US vs Europe or any other country so the user will have to go to another website for specifics which is why each country currently has there own webby MRO - Huntington's Disease Support Center
Regardless of that everything you think you know about HDSA Indiana is wrong.by MRO - Huntington's Disease Support Center