I know what you are going through. Good luck with your testing. I will say a prayer.

My name is Kelly and Im 36, and from detroit. I am starting the testing process this week. Im going to be the first in my family to get tested. My grandmother died of HD and so did my great grandmother. My father is 58 hasn't been tested but everyone is pretty sure he has it and no one (except me) wants to tell him. I am also showing signs of early HD, but it could be related to a brain injury i suffered 10 years ago. I dont want to guess i just want to know.

Kelly, thanks so much for your little profile, helps us all to know and remember about each other, i'll add your post into the profiles right now

My name is Stephanie and I am 38 years old. My father was just diagnosed with HD. His CAG repeat is 41. He is 63 years old. All of my family, including my father, lives in Texas and I live in Maine. Because we had no obvious family history, my sister insisted on a repeat test, which we are awaiting results.
I spoke to my grandmother yesterday and learned that although we do not have any relatives with this diagnosis, we do have a very significant history of psychiatric issues and "dementia". My grandmother can not recall anyone in the family with movement disorders, which is strange. Is it possible to have just the psychiatric and cognitive symptoms without the movement difficulties? My father started showing some pretty significant personality changes about 10 years ago, then started having movement problems about 5 years ago. Although these movement problems are significant, his doctor continues to say that they do not look like typical Huntingtons Corea.
Up until now, my dad was diagnosed with Frontotemporal dementia with corticobasal degeneration. His dr still says he believes my Dad exhibits symptoms of FTD, CBD, and HD.

I have 3 children ages 17, 14, and almost 8, all at risk. I am planning to talk to them this evening because it is becoming quite obvious to them that I am upset about something. My youngest will likely not understand, so I am focusing on talking to my older kids, who are very smart and I am sure will have lots of questions.

This morning I called the lab to start the process to be tested myself. I already have some mild psychiatric issues including anxiety and depression, and I honestly think not knowing would kill me. I'm not somebody that can just "live for today" and move on. I will perseverate on this and it will eventually destroy me not to know.

My sister is 34 and also has 3 children, all at risk.

I am hopeful that I will make some connections through this forum and find some people to talk to about this. Everyone in my family is reacting in a different way and as a result I have to watch myself very carefully to not say something to upset anyone. This feels like a very large responsibility and as a result I am scared to talk to family members. Most of them believe the test was a false positive and are just biding their time waiting for the 2nd test result.

Since finding this out last Tuesday, I have been in touch with the local HDSA support group person and she has helped tremendously. I find that it's all I can think about, and I am constantly obsessed with reading more and finding out more information. Yesterday I came to a point where I had absorbed so much information my brain started to physically hurt. I could not stop the onslaught of thoughts, and could not concentrate or focus on anything else, and so started drinking beer at around noon, which did help me to forget about it for a while, but here I am the next morning back to obsessing and reading and processing. This happened one other time a few days ago, when I started drinking to calm my brain. I am worried about this becoming a pattern of behavior, and am interested to hear if any of you have techniques to calm yourself when it all gets to be too much.

Hi to all! I'm A Space Child because I love the book of wackily rewritten Mother Goose nursery rhymes for science loving children in the 1950's. (yes, I'm old enough). I was ironically already on SSDI for mental illness. Had to wait the two years for Medicare to kick in ('m not 65..) so I could have genetic test, although my neuro doc suspected HD for last year - due to chorea-type movements, facial grimaces (I've mistakenly attributed these for nervous mannerisms...) and memory loss and worsening of mental issues. My psychiatrist though I was just a very anxious person.

I was given the results of my test (didn't have any counseling beforehand) and gently sent out the door, to return for follow-up in 6 months. No connection to resources, support groups - zilch. I'm already a suicide survivor from some years past and my mom died of suicide. What are they thinking??? My personal counselor/therapist thinks that if I get in a local support group (that meets every other month!!!) that I will be encouraged that this might not be as bad as I am thinking; regarding my future.

No clue who in my family had this to bestow it on me, but that's another story altogether. Later...



Edited 1 time(s). Last edit at 08/14/2011 09:54AM by A Space Child.

HI my names kellie
My patrtner of 20 years has huntingtons, he showed sighs about 3 years ago but we did the test last december and it was positive as we expected. His mum passed away at 47 and his grandad also passed away with huntingtons. We live in New Zealand, I work full time at present but not sure how long i can do this...... as i can see in the next few years I will have to become are fulltime caregiver. my deepest admiration for the caregivers of folks with huntingtons......Im scared about the future as I know whats coming its in your thoughts everyday....

Hi Kellie, sorry i didn't notice your post til now. Thank you so much for your mini-profile, it helps us all out so much to remember everyone easier. I will post it into the alphabetical section at the beginning of this thread right now, welcome

Hello I Am Barb Sipes From Harriet Arkansas My Hubby has HD but not tested. Started symptoms 5 yrs ao but refuses testing. However, He was hospitalized last May for psychosis, and is no Haldol now and not angry or aggressive any more. He has agreed to letting the disability Dr. test for HD, as long as they don't tell him the result. We are in the early steps of filing for disability, and have 2 appt. soon, withtheir Dr.s I am newto this site, and was referred here by a post on the HDSA forum. Thoughts and prayers to all. Barb

Hi Barb, and welcome Thanks for your min-profile, i'll post it into the alphabetical section

Hey

I am Chris. I am 42, and living at-risk. My mom had HD. She died on September 6th at the age of 73. She was in an assisted living center for the past 3 years. I have 4 siblings who are also living at-risk. My mother started showing symptoms in her mid-40s. She couldn't sit still. It was embarrasing for a teenager. She didn't get diagnosed until she was in her 60s. I think I am starting to show signs of chorea.

Chris,
Sorry for your loss. Our thoughts and prayers are with you & your family.

Pete & Laura

Chris, I'm so sorry that your mom passed away! Hope you are doing ok. To live to 73 with HD is very extraordinary. Thank you for the mini-profile, i'll paste it into the alphabetical section. Will be thinking of you.

Hello, my name is Dustyrose and my husband was diagnosed 6 or so years ago.It has been horrible..My husband went from a gentle, kind, considerate soul to a violent, sloppy, rude, mean and violent human being..His other family members who have had it and succumbed to it never got violent..My husband has been arrested for domestic violence 3 times and the charges were dropped, 3 times..I am tired...I had emergency surgery about 2 months ago for blood clots and almost died....I am supposed to be getting rest and getting better but I have to babysit him..I just don't know what to do anymore..It has turned my life completely upside down and backwards..It's nice to know now I have a place to go to vent my feelings
Thank you!!!!!
Dustyrose

Welcome Dustyrose.

Hi, I've been on for a while, been just started looking through the mini profiles, so . . .

My name is Michelle. I'm 37, and my son's father (Ray) passed away from HD in April of this year at 46 (CAG 53). Our son, Joseph (19), is at-risk. He just went away to college this year, and he's doing great. Ray and I were at one time married, but divorced in 2000, I remained his caregiver, though, until he went into the nursing home in March of 2008. At that time, my mother and I were still very involved in Ray's care, visiting him everyday, feeding him, taking him out to smoke, for walks and getting him ready for bed everynight. It's been so hard since he passed, as I miss him so much. He was really quite a character!! It was obviously difficult for many years, but am so thankful that we were all able to adjust somehow and try to make the best of a tough set of circumstances. Ray's mom, brother and sister also passed from HD around the same age Raymond did.

Hi I am Kallie I am 33 and I have three beautiful boys who are at risk. I worry about it everyday. I have been married to my husband for 14 years. I got my positive results of 42 repeats when I was 25. My grandmother had it and so do two of her siblings and she has cousins that are positive. My mother and aunt tested positive 10 years or so ago. They have a brother that refuses to get tested. I also have a brother and he tested negative a few years back. I have a lot of the mental symptoms.

Hello everyone! I am a student currently studying Huntington's disease for a project. I chose Huntington's disease because every part about it fascinates me. Please feel free to message me with stories, feelings, or information of any kind. Thanks for welcoming me into your community I look forward to reading all of your blogs.

Hi, I'm redwife. Norwegian, public servant, age 31. My husband is 38, and his mother died from HD in her fifties. We're considering testing.

I'll add that I knew my husband was at risk when we got together, and I've married him for better or worse. I'm happy and strong and do well in a crisis, but still: Sometimes the thought of HD terrifies me so much I can hardly move. So I'm here to try to deal with it all.

Hey guys! I'm Brittany and I'm 23 years old. I haven't posted on this forum for a year, and would like to re-introduce myself. I'm currently working on my bachelors in social work, and then I plan on obtaining my masters in social work and a masters in business administration..My mother was diagnosed with HD 4 years ago. I moved back in with my parents about a year ago. My father and I both take care of my mom who lives with us. She's seem to progress fairly quickly: very unbalanced, no short term memory, unable to perform basic care... My twin sister and I have not been tested yet, but plan to in the next few years. It's very nice to meet everyone!