mY HUSBAND vINCE HAS HD, HE IS 50 IN LATE STAGES WITH A CAG OF 49. HE HAS BEEN IN a nursing home since 2002.

We had no idea hd loomed in our night mares and after 2 years of him not working heard the words of hd the first time.

a few hours on the net and I knew I had found our night mare.....our kids were about 2,4,6,8,18,16 at that time.

Today years later the night mare goes on...the oldest is positve with a gene count of 59. He is serving in the US navy for now.

I moved us across ocuntry to Rhode island 3 years ago from Tennessee.

Welcome Sally

Welcome Sally,

Such a sad story How is your family?

tc, Matt.

[www.hdyo.org]

Hello, my name is Charley. My wife tested positive 4 years ago, CAG of 42. We are both 61 years old and will celebrate our 38th wedding anniversay this Dec. My wife's mother had HD and died in 1979 at the age of 68. My wife's older brother tested negative and has 6 children. This same older brother is a medical doctor and diagnosed my mother in-law as having Huntington's in 1970. He knew the family history and did enough research to feel condident that his mother's malady was Huntington's Chorea. Based on his diagnoses, my wife and I decided to adopt rather than build our own children. We adopted two daughters as infants 2 years apart. They are now 33 and 30 years old. We have our first grandchild now, 10 months old, and of course he is wonderful. My wife retired from her job as a high school librarian this March. She applied for and received SSI disabilty. Her symtoms are mild, but increasing...lack of balance, slurred speech, and come slowing in her thought/information retrieval process. Her personality has not changed in a negative way, she is still the sweet girl I married, patient and kind. She retired because she was no longer able to do all of the many tasks that a teacher must perform. We live in Oklahoma City and have participated in the Maraxion phase III trial. We were notified after the trial ended that we had received the drug for the entire year, but we saw not difference. We are now participating in the Co-Hart study through Washington University Hospital in St. Louis.

I have been visiting this site for a long time now and felt I should introduce myself and my wife. For a long time I hesitated because of employer and insurance concerns. Now that my wife has retired we feel that we can be more open. I have gleaned a lot of important infomation from this site over the last few years and want to say Thank You to all who have contributed. Now that we have shared this base info I will feel better about contributing/commenting from time to time.

Thanks for all of the help in the past and I'm looking forward to spending time with you all in the future.

Charley

Hiya Charley,

You seem to be a very smart pairing. Sorry to hear about your wifes condition. I hope you two can remain strong and live life happy.

Tc, Matt.

[www.hdyo.org]

Hey Barb, I have been using my space more to blog and post updates so if you want to add it to my mini profile please do
www.myspace.com/dcb3210
miss ya
Deb

DCB
*Living for today*

Charley welcome, and look forward to getting to know you and your wife, so glad you're able to join us now

Done Deb

Welcome Sally and Charley.

While it's sad that we have to have a forum like this one, I'm thrilled we have it so we can finally meet people who "know" what we are talking about.

I don't even know what page my mini profile is on anymore. Brief bio:

My mother was the first in many generations to not only be diagnosed HD, but to refrain from committing suicide because of it. She was 32 when she started showing signs and 40 when she was diagnosed. I was born when she was 35. There are 3 of us at risk. My sister is of symptomatic age, but seems symptom free. Mother was in a nursing home for 16 years before she finally died, peacefully, the day after Christmas last year. There were 6 in her family, including 1 sibling, that all died of HD last year.

I'm married, SAHM. I have 5 step children, 3 boys of my own (one with autism) and I am an advocate for both HD and Autism.

Welcome to our group.

Melissa

Hello Everyone. I'm 33 years old. I have two awesome kids My daughter is 13 and my son is 6. I live in a small town called Waverly, NY. I am HD+ with 44 CAG repeats. I have some symptoms but they are mostly mental at this point. My Grandmother, who I called Nanny & my Mother were both HD+. My Nanny, committed suicide when she got her results, she was 41. My Mom, died of other complications just as chorea was becoming noticeable, she was 39.

Feel free to ask me anything! I m not shy.

Jemi

Thanks so much for your profile Jemi, helps all of us so much to get to know each other.

I am 42 y/o and my husband Dennis is 51 y/o and has HD. We have been married for 17 years. We have 2 sons that are 16 and 12. Dennis' mother has HD and has been in a nursing home for 15 years. She is in end-stage but has been for a long time. My husband was diagnosed 2 years ago. He had symptoms for at least 5 years before being diagnosed. He no longer works and was able to get disability. I am so excited to have people to talk to about what we are going through. Some days are tough but somehow we get through them.

Bobbi, it's nice to meet you and welcome

Dolly:
Hi my name is dolly... Prospect Park, PA...My partner of 18 yrs are caring for Alexis her daughter, who just had her 30th b-Day... she was just diagnosed... and Alexis and our 2 grandchildren 4&6yrs old are living with us...
We are all hanging in together... we are a family unit...and we are very scared.. not knowing are next step... thought this might be a good begining.. very scared all of us... So glad to be a part of this group...
thank you,
dolly

Dolly, it's so good to meet you and welcome. Thank you for your intro, it helps all of us get to know each other and help remember who the newcomers are...i'll paste it into the opening post. Wow, you both have a huge burden...hd is hard enough, but when young adults also move home, that's a whole new thing to get used to. Be sure and enjoy those grandkids, and join in the threads when you're up to it



Edited 1 time(s). Last edit at 03/22/2009 08:01PM by Barb.

Hi I'm RAY (Niagara Falls) i have all the symtons of HD but waiting on test results so don't know if my post belongs here or not i''m 57 use a wheelchair to get aaround i have a difficult time holding onto things so a cane is not much help its more of a hinder. I did some checking and no one on either side of family as far as we know ever had HD guess i just wait and see.

I thought i would update so you all know my results on blood test.
It came back negative for HD but a mri was done too it was postive for MS i'm living threw most of the same things you all are but a different disease at least know i can get treatment to help ease some of the effects there is no cure my heart goes out to all of you and will remain in my prays take care all your friend RAY



Edited 1 time(s). Last edit at 05/12/2009 10:42PM by RAY.

Of course you belong here Ray If you're testing for hd, this is the place to be Thanks for the profile, i'll paste it into the first posting in this thread

My name is Mrs. Pippens. I tested postive for the gene 2 years ago, CAG 40 I am 45, married to an active duty Marine, and have 2 children, 16 qnd 10, who are the delight and joy of my life! I am experiencing soft symptoms. I am afraid of HD, especially the chance of having passed it on to my children. I have a horse and I love to trail ride. We live in southern california. I am new to this site.

Nice to meet you Mrs Pippens, and thanks so much for your mini-profile, welcome

First and for most I am a wife of 20 years and a mother of 4 not so young children...1 step-daughter(21) 2 daughters(19,18) and 1 son (16) and 1 grandson (2 1/2). I am 40 years old and also at risk for HD along with my 2 brothers and 2 sisters... non of us have been tested yet... only family history known is g-grandma, grandma, mother and an uncle that had or have HD

MJGarcia