Husband has problem with toe movements. Big toe and second toe constantly moving, sometimes causing irritation and/or blisters between the toes. He wears socks to sleep in to try to minimize this, however they are not working. Has anyone experienced this problem, and found a solution? I 'googled' oriental toe socks, however they were either for all five toes, or the ones that only divided betweby greeneyes - Huntington's Disease Support Center
yes, yes, and yes!! Hubby did not have low BP at first symptoms or diagnosis. Later years revealed low BP. Is taking fludrocort 0.1mg tab for this. Usually keeps BP in the 100/60 range. He frequently experiences "dizzyness".by greeneyes - Huntington's Disease Support Center
Did NOT like it. Even at a small dosage, made him "zombielike". Dr. suggested to use it only if he gets violent. Yeah, like I'm goining to try to make him take then....he's benn on resperidone for 4 years. This has worked 98% of the time. Remember, every pHD is different.....by greeneyes - Huntington's Disease Support Center
I too sometimes miss "what was". But I treasure "what is!"by greeneyes - Huntington's Disease Support Center
Hi Wendy, My husband was diagnosed 4 years ago. The neuro said at that time he was in "early" stage. He has been on respiridone for about 3 1/2 years now. It was prescribed for anger/aggression, but I have read that it also can be prescribed for chorea. (Please note: symptoms actually began as early as 2006) His movements are primarily in his hands and feet: Feet - taps his fby greeneyes - Huntington's Disease Support Center
No, we CAN NEVER give up hope. We owe it not only to ourselves, but for generations to come. One day....HD will only be a memory...one day!!by greeneyes - Huntington's Disease Support Center
Thanks Will !! When I first saw her post, I thought "Not another one!!", but due to your recommendation, I will give it a try.by greeneyes - Huntington's Disease Support Center
Also, I'm confused about the SS death records. Some of the people I know should be there, but aren't. Have even tried different spellings, etc. So the question is: when did they start issuing SS numbers? When did the death records start? Any answers/suggestions are extremely valuable, and greatly appreciated. Thanks, Debbieby greeneyes - Huntington's Disease Support Center
I also do some genealogy research. My husband's father died in a car wreck, in the 70's, so we didn't know he was at risk. But in doing the research I was able to find many family members who were diagnosed with HD. This info. helped us to forego the "counseling" etc. that is usually required prior to testing. Anyway, the gene came from his grandmothers side. She was one of 12 chiby greeneyes - Huntington's Disease Support Center
Have seen many posts regarding the aide of a social worker. Wondering how to go about finding one? Family doctor does not help with this. Am in Tennessee.by greeneyes - Huntington's Disease Support Center
My husbands grandmother was diagnosed with Parkinsons, but later changed to HD. She had three sons. Since there is a 50/50 chance with HD, you would think that the odds would be with one of them. The oldest and youngest son were diagnosed with HD, and have passed; one from pneumonia, and the other from esophageal cancer. The middle son was killed in a car wreck at the age of 31 without any diagnby greeneyes - Huntington's Disease Support Center
Betty - previous posts from children with pHD parents on this board. And within my own extended family, HD has presented not only as kind and gentle, but violently aggressive.by greeneyes - Huntington's Disease Support Center
The doc prescribed Xenazine as soon as my husband was diagnosed. Simply because it was a drug for HD. My husband didn't like it at all. Said it made him feel "jittery". With his doc's advice, he quit taking it. Also, his movements were, and 3 years later are still confined to his fingers and feet. He is also on Risperidone, but for agression, not movements. ( I didn't know that respiby greeneyes - Huntington's Disease Support Center
So many posts are related to children. Whether or not ot have them, naturally, IVF, adoption, etc. I get so angry when I read these. I want to apologize for my feelings, but the apology would be insincere. As we all have learned, HD is NOT just chorea, but in most cases the cognitive aspect is the more pronounced. And it affects each individual differently. I would like to see studies done thby greeneyes - Huntington's Disease Support Center
Link, please?by greeneyes - Huntington's Disease Support Center
I'll ask Steve and/or Marsha to chime in with the link I'm looking for. It is a "Card" on this site to carry around with you that explains HD to persons such as the police.by greeneyes - Huntington's Disease Support Center
Neurologist had someone come to the house and draw the blood. Two weeks later results were phoned to us.by greeneyes - Huntington's Disease Support Center
If you ever hear of a study "down south", please let me know. In my genealogy quest I've come across 16 confirmed pHD's, with at least 32 at risk over 5 generations. All of the oldest generation have passed on. I find this somewhat uncanny to have so much in one family. You would think that with a 50/50 chance, there wouldn't be as many.by greeneyes - Huntington's Disease Support Center
the softer symptoms are more apparent to - I believe this to be the ones who have known him awhile and are in his life daily. I'm aware of changes that his brothers and sisters don't recognize. To me, he has very obvious signs of personality changes and other "soft" symptoms. - like the old saying goes "did you ever really know him at all"? I don't think our almost 4 yeaby greeneyes - Huntington's Disease Support Center
Our neuro said no to an MRI. Said it would only serve as a baseline, to be used later to show progression, and not as a diagnostical tool.by greeneyes - Huntington's Disease Support Center
No, my husband did not curl his toes prior to the diagnosis. He did however move them alot. Especially rubbing the big toe and second toe together. He too said it felt good.by greeneyes - Huntington's Disease Support Center
Totally awesome!! Thank-you Marsha!!by greeneyes - Huntington's Disease Support Center
You mentioned TN, and that is where I am. So you know that TN now requires that both parents mediate and come up with a "Parenting Plan". And that if that doesn't happen because the parents cannot agree, then the court steps in. I would advise that you stick with the temporary agreement as long as you can. You've got more than a year before the overnights are supposed to start. Aloby greeneyes - Huntington's Disease Support Center
My husband smells things that I don't smell....and I am very sensitive to smells.by greeneyes - Huntington's Disease Support Center
Gotta have hope. When my hubby and I first got together, we were told the only way to be tested was to compare my hubby's DNA with a direct relative who was positive. The fact that there is a test now is wonderful. The more people who talk about this disease, the more the doctors learn, and so on.....by greeneyes - Huntington's Disease Support Center
I'd say keep it to yourself until it becomes a problem for YOU. My husband told his employer of the possibility, and for 6 years he was harassed at work to get tested. The everyday mistakes that we all make were attributed to the disease by the employer (who researched HD). Also, even though all say it isn't so, once the employer knows, so does the insurance company......by greeneyes - Huntington's Disease Support Center
Anyone out there in Tennessee that can help me with Medicare? He's got the Part A, and I enrolled for a Part B about six months ago. We tried to get the Part D at that time, but were told we would have to wait for open enrollment. So now it is here, but try as I might, I just can't grasp all the stipulations they put on this insurance. So, as most people would, I am looking to enroll in the beby greeneyes - Huntington's Disease Support Center
Hey Melissa!! Beautiful tattoo!!! I also have an HD tattoo. I got it six months after my husband was diagnosed. It is a "bracelet" of pink flowers in vines, with the center reading "Cure HD". Basically, I got it to support him, and educate others. My husband and I both had wedding bands tattooed years ago, and many people asked about them. Now they ask about the braceletby greeneyes - Huntington's Disease Support Center
Most of my hubby's symptoms are cognitive. Although there is some chorea, it is not something that others (who don't know about the HD) actually notice. He takes respiridone for the agression, and fludrocort for low blood pressure. Whether the BP thing is from the HD or the respiridone, I do not know. He has expressed that he can no longer drive, because he says he doesn't "think" fby greeneyes - Huntington's Disease Support Center
Hi folks!!! Just wanted ya'll to know that I'm back on the site. We've been doing pretty well. I lost my job, and our insurance, but managed to get Stanley on part B in time, still waiting for the open period for part D. Might sound like we got hit in the stomach, but we've made it through, together. Stanley is doing relatively well, seems to be progressing slowly. We're happy!! Can you imagby greeneyes - Huntington's Disease Support Center