Hi am I Tracie, this is my first post though I have been a reader for years. I am at risk, 32 in Portland, Oregon. I have a 16 year old daughter. My mother was diagnosed with HD around the time she got pregnant with me in 1974. Her last name was Thomas, she was from Spokane, Washington. I know she had additional siblings but her side of the family has been estranged since her death in 1987. I would like to hear from anyone who knows anything about them. I had two brothers. Both HD positive around the age of 28. One is in assisted care, he just turned 40. The other one passed away accidently this January in Port Orchard, WA. He would have been 39 this year. God bless each of you that have lived this life, its been hard but rewarding also. May god hear our prayers.

Hi Tracie, it's nice to meet you. Wow, your family has had a rough go with hd, thank you for sharing, wow. I am always amazed at the people i meet here, because my road with hd has been very easy, compared to others. I didnt grow up with hd all around me, me and my dad are both just in early stages right now, at the same time...smile. Welcome Tracie.

Tracie,

Welcome to the group. I grew up with HD all around me too. My mother was still "normal" in the 60's when she had my sister and raised 2 of my cousins. She started showing signs or being symptomatic or however you want to say it in 77 or 78. I was born in 79, my brother in 84, and then she was FINALLY diagnosed in 86. She has lost 2 siblings to cancer so far, but they also had HD. She has one other sister who definitely has it and is in the far off reaches of denial. The other two siblings seem HD free. My older sister is showing symptoms..again denial rears its ugly head. My brother went to go live with my gramma when he was 8 and I was 13. I was left at home to take care of my mom while my alcoholic dad worked. He was the world's worst dad...or at least on the top 10 list, but he was a really great husband. Mom not only never saw him drink, but never saw any of his bad behaviors. He ended up working three jobs to keep her with decent care. He had what I call "caregiver's heart attack" and died in January of 2007. Mom's been in a nh since I was 15 and couldn't physically or mentally care for her anymore. My mother was the first one in the family that ever had this disease and chose to live with it. All others chose to end their life in one way or another. Even her two siblings...they found out they had cancer and chose not to fight it...what's the point when they have HD. I don't necessarily disagree with them.

Sorry if this is a book, I just wanted to let you know that there's some people here who understand what it's like to be young and have this hell soak up your childhood and life like a sponge.

Then there is my non-HD life if you can call it that. I'm getting ready to be a gramma for the first time. My stepdaughter is expecting. I also have 4 other stepchildren and 3 of my own, one has special needs. I understand what it's like to feel like you are being pulled every which way but loose.

Hang in there and you can pm me or post to me or whatever if you want someone to listen to you.

Again, welcome

Melissa
Melissa

Thank you Barb. I do feel welcome : )

I just wanted to say hi to all the new people. This place can be a life saver.

I'm Dave from Virginia. My wife 55 (CAG 44) was diagnosed in 2000-- early symptoms in mid-1990s. She has lost almost all motor skills but still speaks clearly and has a great attitude. HD was a complete surprise--likely came from her father who passed away at age 78.

Welcome Dave. It's good to have you here. I'm so glad that she can still speak clearly. I think my mother's voice is what I miss the most. Again, welcome to the community you probably never thought you'd have to belong to. We may talk 90% about HD here, but some of us still try to throw in some humor.

Melissa

Hi My name is Crystal I am 27 yrs old. from Ottawa, ontario canada.
My grandmother(passed away (2001), my father have HD and my sister and I are HD postive.
I belive I have 42 CAG. I can not remember ( I am going to double check)
I am married with no Children yet, but I do want some. We know the risk, but can not kept living.

Hi Crystal, and welcome!

Hi Crystal!
I too am in Ottawa! My husband is phd with a cag count of 41. Welcome!
Trish

Hi, my name is Amber. I am 46 years old and at risk. My father and three of his 9 siblings had HD (the others died from various illnesses not associated with HD.) Only one brother is still alive after having the disease for many years. His daughter, my 1st cousin is in the early stages of HD. My older brother who is 49 has tested positive but not showing symptoms. My sister, who has been showing symptoms for the past 10 years (depression, mood disorders, balance and chorea) has finally agreed to be tested. I am at risk and at this time chosen not to be tested. My dad's 1st cousin was tested a couple of years back (in his 70's) and also was positive. He is now showing signs of chorea. Since my dad died, we lost contact with his family and other than his cousin and mine, we don't know any other family members who have HD. We have a wonderful HD clinic at the University of British Columbia, with fabulous doctors including Dr. Michael Hayden, who recently found a cure for Huntington's disease in HD mice. I am finding it quite overwhelming and hope that this support forum will help me through the rough times. None of us have children, so the disease will end with us. I have a wonderful and supportive husband, Wayne and three step-daughters and six grandchildren.

Hi Amber, it's nice to meet you! Where are you from in BC? I'm in Mission. I'm in the very early stages of hd, and yes, we go out to UBC too. Very fortunate to live where we do and be able to go there. And yes, hd is very overwhelming at times, and having people here to talk to helps so much. Nice to meet you!

welcome amber

Hi I'm sandy (NC). I am 57 year old and also at risk. My brother was tested 2 months ago and is positive. We noticed corera symptom in 2000, but have no family history that we know of. Paternal grandfather may have been, we are in the process of obtaining his medical records. We are a family with 4 siblings (all in our 50's now) and trying to sort things out as should we be tested or not.

Hi Sandy and welcome!

Hi Sandy..welcome...you have found a good place

My name is Teresa, I am 51 years old and have HD. I live in Minnesota with my husband. I have two daughters one HD pos. the other not tested yet. My mom died in 1985 from HD and I have an older brother in the late stages.

Thank you for the profile Teresa. I'm in the early stages too, and i have two daughters, age 30 and 27. Neither one of them have tested yet. That must have been difficult receiving your daughters positive test result...i don't look forward to that possible day myself. Welcome

I'm Scott. 44 married 3 kids.

I'm @risk and becoming increasingly concerned I'm symptomatic. My sister is early-mid stage. Our 4 brothers are all @risk and asymptomatic. My father was the first in his family diagnosed in the early 80's when he was 55. His mother undoubtedly had it, though much of her problems were diagnosed as stroke-related. He died in 1987 when HD took such hold he took his life.

Hi, I'm Fleur in the UK, age 48. My dear brother in the US recently tested positive with very early stage HD.
I'm preparing to be tested, though I'm asymptomatic so far. My first genetic counselling appointment is in 10 days and I'm scared. I've felt quite isolated with my HD concerns and I'm just delighted to know that all of you are here.
I'm married with two teenagers, 15 and 13, who dont know anything about HD in our family yet.