Thanks so much for your intro, helps us all so much

I am almost 33 and tested positive recently. I have 44 repeats and I'm starting to have a few symptoms. I have a husband and 2-year-old son. My mother had HD (although we didn't know what it was at the time; she died at age 44. I have 2 brothers who have not been tested.

I'm a 23yo female from New Zealand and tested positive a few weeks ago. I have 45 repeats and am symptom free. My dad has 46 repeats and started to show symptoms when he was about 40 - he is now in full-time care. I have two sisters who have not yet been tested. I have decided to go through PGD/IVF when I have children in a few years

Hi there, and welcome, thank you so much for the mini-profile, makes it so much easier for us all to get to know and remember each other. You seem to have a very positive attitude, and very brave of you to test, good for you!

Hi everyone i would like to introduce myself. My name is Bonnie and would like to chat with people going through the same thing I have been going through all my life. I am 43 year old female at risk, I lost my mother in 1990 and my sister in 1998 and now brother on Wed. the 15th May 2009:. So far my older sister Bren which is 58 is not showing of any signs and Iam not at this point. Everybody in family that was diagnost with hd has been in their late 30's. So I have been running scared since I understood everything It's nice to know that Iam not alone.



Edited 1 time(s). Last edit at 05/19/2009 11:33PM by beachbum.

Believe me, you are not alone, Bonnie!

You will find great support, here........

jl

I am Clarence, I care for my wife Cindi who has HD. We are not sure of when it started because other health problems may have masked the begins of Huntingtons. Cindi and I met in the U.S. Air Force from which we both retired. WE've been married 32 years. We have raised two daughters and have two grand childern, all at risk of HD.We live in Glenwood IA, it is about 20 miles south east of Omaha, Ne.
Cindi's Father, Uncle, and two brother had HD. We lost her younger brother in Mar 09 to HD.
In 2003 it was clear she had HD. I became a Over the road truck driver, so she could come with me and we could spend more time together. Last year I stopped driving, because she was no longer able to come with me. Cindi is sluring her speach and needs a walker to prvent falls. She has lost interest in most her former activites. I pray God helps me as I am making alot of decissions for her now. We are just making it one day at a time.



Edited 1 time(s). Last edit at 05/14/2009 06:43AM by cnc60192.

Hi Clarence. I live in Omaha and used to have friends in Glenwood. Welcome to the board. You will find a lot of support here. I am at-risk and we've charted this back 7 or 8 generations. I watched my mother and other family members go through this. My sister is 42 and currently is at risk. I have no idea if she plans on testing or not. I'm 30 and am getting very close to the age mom was when she started showing signs. My younger brother is not tested either. He's waiting to see if he'll develop symptoms.

We are here to listen and help eachother.

Clarence it's nice to meet you. I'm symptomatic too, became symptomatic about the same time as your wife, in about 02/03, and i was diagnosed in 04. Welcome to the forum

Dear Group,

My name is Judy. I have posted with a variety of screen names, including "Tellie" and my whole name, off and on the the past few years.

I tested positive for HD five years ago, with a CAG of 42. I am 54 years old, and have not been diagnosed with symptoms (although I haven't been to the doctor for five years).

I am a singer, music teacher, and church musician. Until about 3 years ago, I was a long-time member of the Chicago Symphony Chorus. I have been teaching music courses at Columbia College since 2007, but have recently started to struggle with the higher level classes.

Anyway, I have some time now to be a contributor to the forum, so I hope to be speaking with many of you on the list.

Welcme, Judy - I look forward to talking with you!

jl

Judy, it's so nice to meet you, and welcome! I'm so sorry, i missed your post until now, i will copy it into the profiles right now

Hi, I'm Jackie. We learned of HD in 1998 when my father, after years of symptoms, was diagnosed. No treatment for symptoms in small town Wyoming. Passed away institutionalized in Vet's Hospital. In retro, seems gf and ggf had symptoms; gf passed in state mental "asylum." 4/7 siblings in father's family have passed - 1 suicide; 3 in institutions. Those of us in at-risk families have not kept in touch. We hear of others' symptoms through the rumor mill of the not at-risk cousins. In my family, three siblings. Two of us decided early not to have children after living with Dad through some really difficult times. Two of us married and had a family. The two who married (total of 7 offspring) are each positive and symptomatic. Needless to say, the two of us who are negative, who have always lived as though we would become symptomatic, are at a loss. We are trying to make sense daily, to provide support, and who are so very grateful for the insight and support offered here. Peace.

So nice to meet you Jackie. Thank you so much for your min-profile, and welcome to the forum

im 20 ill be 21 in august
i have arm twitch
i have been clenching my teeth in my sleep
im clumsier then usual
im confused and cant remember important conversations
my birth dad and his dad have it
my parents have always known it was a possibility
but they finally decided to get my blood tested 3 years ago
my mom had my ginotoligist take more blood than neccisary when i went to get an hiv/aids test i didnt think anything of it my ginotolgoist sent the results to the university of washington to be tested they tested it three times and all three times it came back possitive i was not with them when they did it my mom decided to tell me on her birthday on june 27, 2009 cause she started noticing symptoms like my arm twitch my parents did it behind my back i feel alittle betrayed but i undeerstand why they did it i have never been stable my whole life 3rd grade was when it really kicked in my depression is more biological i think but ive been on the same meds for awile and ive felt fine up until 6 days before they told me and its just been getting worst and worst i want to be left alone soooooooo bad but im also afraid of losing my boyfriend and my family ive already lost my friends but hopefully everything will get better cause i feel ive hit rock bottom


KATEY

KINKEDKT

Katey, thank you so much for your profile, i shortened it a little bit and put it in with the rest of the profiles

Hi I'm Jennifer; 26 year old living at risk w a 6yr son, 2 nieces/nephew/3 sisters/cousins/aunts/uncles all @ risk. Co-caregiver to my mom who has late stages of HD. Trying to see what's working and what doesn't. Her choric movements have gotten so intense, and it's hard for her to eat, stand, walk, etc. She just wants to sleep all the time. Her Dr. doesn't specialize so it's harder to get the right cocktail of medicines. It's stressful watching a loved one detriorate in front of your eyes. It's even more stressful to look into your kids eye's knowing you might have passed them the same fate. We remain a relatively happy family and it's broughten us alot closer. I thank GOD for every moment I have with my loved ones. God bless.

Hi Jennifer and welcome

hey barb!! just in here looking up someone and realized my stuff is out of date!! I am now married 13 yrs, and the best place to reach me any more is via face book dont do any thing w/yahoo any mre and very little w/my space hehehhe but everything else is still pretty accurate !!

DCB
*Living for today*

oops no, dad is now in late stage and t and I have been together 18+ heheh talk soon
Deb

DCB
*Living for today*