I would highly suggest reading over older posts here. That's what I did when I first found this site...I spent hours looking over what everyone had to say. One thing I learned from Barb (a pHD) is that HD affects different parts of the brain in different people, so no 2 are really affected exactly the same. But there can be many common themes. Some people seem to be less affected. I personalby eve - Huntington's Disease Support Center
Wow that really sucks Nancy. Hopefully the card will help stop any future episodes from happening.by eve - Huntington's Disease Support Center
Noreaster, I think you said some very wise things that needed to be said! I'm not a pHD, but I totally agree with your opinions and observations. Thanks for your wise input.by eve - Huntington's Disease Support Center
Oppps, I guess Marsha already answered it while I was typing my long-winded reply.by eve - Huntington's Disease Support Center
My FIL's symptoms were very subtle. He didn't really have chorea as you often see in videos. His was more like he was fidgiting so everyone thought he was nervous. I didn't know him when he was young, but apparently he was a very good natured, easy going guy most of his life, but he became more hotheaded as he got older. Probably this was a soft sign of the disease progression. When I firstby eve - Huntington's Disease Support Center
I am glad to read about how you told your son, Pattty, and glad to hear that he took it well. I will have to go thru that someday and I dread it. But I also want to be honest with my son. He just has a lot of issues and we're seeing child pych. soon. I pray that when the time comes this news doesn't push him over the edge.by eve - Huntington's Disease Support Center
I'd never knew about this publication, Mike. Thanks for sharing.by eve - Huntington's Disease Support Center
My FIL had about the same CAG count and he lived to be about 80. Usually the lower the CAG, the better chance of late onset. There really is no treatment, unless she has symptoms. An example would be there is medication that sometimes helps chorea. And in the advanced stages there may be suggestions to help with daily living problems such as ways to help someone with swallowing/eating issues.by eve - Huntington's Disease Support Center
I'm really sorry to hear you're going through this, Judy. I also feel bad for your husband. I love to eat, so in my opinion this would really suck if I were him. I have a son with mild autism, but he has always been a picky eater. I read a book before he was born that said to just serve a meal and they can eat what they want from it...don't make special food for your kids. But I have to sayby eve - Huntington's Disease Support Center
Mike, I'm not a pHD, so I guess I can't answer this. I will say I've never heard of this, but I'm not even sure I understand exactly. I don't experience this phenomenon (?sp). It sounds interesting. Sometimes I think that researchers should look over the posts here and they could get some important clues about HD. It will be interesting to read if anyone else on this site has experienced thiby eve - Huntington's Disease Support Center
I just want to mention that there was no family history for us either. My father-in-law had a low CAG count (the blood test number) and lived to be about 80. Use the "search" area of this forum to look over older posts. Will and Smiling Sara have written about their supplement and exercise regimine that certainly sounds like it would be helpful for anyone. I imagine Norway has someby eve - Huntington's Disease Support Center
I too am glad to see your wise posts also. We've missed you and hope everything is going well for you.by eve - Huntington's Disease Support Center
My husband thought he didn't have it, but he did. But I've read many posts where people thought they didn't have it and then they tested and were right. Also the opposite situation will happen probably just as commonly. A person's thoughts will have nothing to do with the test results. That's just sort of magical thinking. It's true that later in the disease pHDs will often be in denial thaby eve - Huntington's Disease Support Center
Hope2, I'm very very sorry to hear about this. What a shock to have things happen so fast. This has got to be extremely stressful and frustrating. Marsha, THANK GOD for you and your wonderful ideas. Hopefully something can be figured out. I'm also posting because I'm wondering what ECT is?by eve - Huntington's Disease Support Center
This is a tough call. Does she attend a church...maybe you could call one and clue them in (anonymously if you don't want your family to know) that might offer her help/support? Maybe a pastor could make her feel welcome and help? Maybe there are others in a church or the community that would be kind and understanding and visit her? I understand how this is haunting you. The story bothers mby eve - Huntington's Disease Support Center
So glad to hear this good news! Keep us posted!by eve - Huntington's Disease Support Center
Hi Chrystal! Glad to meet you. Sorry to hear about your daughter and the at risk status of others in your family. My son is at risk. I think there will be a lot of wisdom and support here for you. Did you know you can click on the search button for certain topics? Also I thinkyou can still go back and read older posts (Marsha and Steve manage this site and put a lot of wonder knowledge andby eve - Huntington's Disease Support Center
Thanks Carla. I hope you've gotten over any "guilt" because like you said "what is done is done". You did it to help Tim. Plus it may have made no difference and who knows, it actually may have helped him...I wish there was more info about it. When I read through these posts, one thing that strikes me is that different meds seem to sometimes work differently on different pby eve - Huntington's Disease Support Center
I like this new format too! Good work Steve!!!by eve - Huntington's Disease Support Center
Welcome Jon. You're among friends here. Sometimes there are differences of opinions (like any family), but we all are in this together. I think you'll find great support here.by eve - Huntington's Disease Support Center
I also wonder if it depends on who's reading the MRI? This is sort of unrelated, but I had a friend whose MRI was reported as "fine" by one radiologist, but then another institution's radiologist read it differently and said there is a tumor that needs to come out. It turned out to be a cancerous tumor, so thank God her doctor sent it to another place for a 2nd opinion. So in my miby eve - Huntington's Disease Support Center
My at risk son (under 10 years old) has ADHD. His pediatrician is thinking we should consider a stimulant if this newest med. change doesn't seem effective. I feel worried since there is one case report where a child had JHD and was thought to have ADHD and was placed on Ritalin and it caused irreversible symptoms. I think the likelyhood that my son has JHD is probably low (his father's CAG isby eve - Huntington's Disease Support Center
That was a powerful story. Such a good thing to read.by eve - Huntington's Disease Support Center
I don't have a magic answer for you. One famous quote I like is, "Plan for the worst and hope for the best. " Basically I want to say that you should carefully think through every scenerio and "what would happen if______ (fill in the blank) then possibly_____(fill in the blank). You've got to live your life and try not to live in fear. But that being said, make smart decissionsby eve - Huntington's Disease Support Center
She is such a great writer. It makes my heart weep to read it. I'm glad she realized she needed to bring her sister to a NH and that the decreased stress has helped her. I pray for a cure right along with her.by eve - Huntington's Disease Support Center
I just want to comment/compliment djcloc's HD caregiver's survival list...it is excellent and really puts things into great perspective!by eve - Huntington's Disease Support Center
If you do a search about SSRI (selective seratonin reuptake inhibitor is what I think that stands for) you'll see that it is thought that they may help protect the brain cells. There are several and this is one. I think a study is being done about one called Celexa (generic is Citalopram) to see if it helps with HD. Google it to see the side effects. Here's one site that seems reputable: Yoby eve - Huntington's Disease Support Center
A long time ago you happened to mention it here on the forum and somehow I remembered. It's just another reason I admire you. But I mainly admire your great attitude and you caring to share your knowledge with all of us.by eve - Huntington's Disease Support Center
Cool! I will check it out.by eve - Huntington's Disease Support Center
Ha! Good one Will. Your mensa IQ is showing!by eve - Huntington's Disease Support Center