Scott, welcome to the forum! It's sad that it's hd that brings you here, but this is a great place to ask questions, talk, vent. Good to meet you!

Fleur, welcome to the forum! Feeling isolated with hd concerns is something i totally understand, and i know that talking about your concerns will help so much.

Thanks Barb!Im excited to listen, learn and share.
My latest hurdle is worrying that all my ordinary quirks are HD symptoms. My genetics counselling appointment is two weeks away. Er, anyone think there could be a connection?
As an at-risk person, there have definitely been times, like when I flew to the US to attend a few amazing HDSA AGM meetings and was listening to lectures and participating in groups, when I monitored myself more and wondered if every little thing I did was a symptom.
But everything feels different now Ive decided to be tested. Yesterday I started cataloging in my head all my recent memory lapses, bad driving manoevres and social anxiety behaviours, some of which are like my Dad who had HD. I was thinking I was symptom free, but now I'm not at all sure. And I feel increasingly afraid.
Anyone else been there, as they prepared to be tested? Everyone's post sounds so positive, but I feel scared s***less.

Hey fleur, im going to put your post on a new thread, so others will see it to.

Hello- my name is Sarah (aka purplegal) and I live in Montana with my two children (9 adn 6 years old). My mother is adopted and tested postive for HD 3 years ago (46)- rocking the world of my sister and myself. I tested two months later with a count of 45. After staying away from this site for 2 years- afraid that I would be scared silly (which I have , but I have been coming for a couple months and have been blessed by the honesty and encouragment.

I find the gray area of living at risk very difficult. The symptom hunts are maddening as I am afraid of losing my ability to be rational, responsible and loving. However, I am blessed to have a strong relationship with God that allows Someone else to shoulder the burden.

Glad to be here...and wish I would have came sooner!

Welcome Sarah,

We are happy to have you.

Melissa

Thank you for sending a mini-profile Sarah...it's just so great having these little notes to help rememeber everyone, i know it sure helps me! lol So if anyone hasnt sent in a mini-profile and would like to, i would be happy to put it up for you. Also if anyone has any updates they would like done to their profile ie marital status, age, number of kids, etc. i'm happy to do any updates too.



Edited 1 time(s). Last edit at 09/16/2007 03:22AM by Barb.

Please update mine on age and employment status, if you would. Thanks!

JL - gene positive (CAG repeat of 43). Age 59 Some balance and irritability symptoms are beginning. But nothing visible, as of yet.
Continued to work full time for a few years due to an ADA Reasonable Accomodation that allowed me to do software development from home 3 days a week. I'm now on disability retirement. I have no children, but my PHD sister has 4. I live in the USA in the state of Oregon (in the Pacific Northwest). I consider having been born in Oregon to be more than adequate compensation for having been born with the HD gene!



Edited 1 time(s). Last edit at 09/15/2007 12:41PM by JL.

There, i updated you jl, and i included your cloud 9 lol so cute! lol



Edited 1 time(s). Last edit at 09/16/2007 03:21AM by Barb.

Hi, I'm JJ. I live on the east coast of Australia and have a 60 yr old husband diagnosed with with HD in 2004.(CAG's 43)
We have 2 at risk children and 4 grandchildren.
There is no documented family history, so we were all shocked when my husband was diagnosed.
It appears as though the gene came through his mother and maternal grandmother.
Our children have chosen, at this point not to be tested.

My husband has been symptomatic for about 7 years and had to give up work 3 years ago.

It's good to read about you all...makes us feel like we are part of a large family...genetically challenged, but very loving.

All the best to everyone.

JJ

Hello and thank you for this website.

I am the well spouse of a 56 year old husband who was diagnosed with HD in 1996. He began showing symptoms in 1992. He had to quit working in 1999 and we had to place him in an assisted living in December 2006 due to his rages toward me and our inabililty to control them through medication.

We have a daughter and a son who tested negative in July 2007. We are very blessed.

There are so many things that happen during the course of HD. I am sure there are many out there who could write a book. It is good to share our experiences; it helps to know you are not alone.

Thank you JJ and doublej for sharing your profiles! Amazing the similarities between both your nicknames, and your lives!

welcome to both of you.

My father was diagnosed with HD in October 06 and my brother has recently been diagnosed as well. Another brother and me have tested negative and an older brother died a few years ago (and we debate whether HD was involved.) We are all in our 40's My father's CAG count was 41 and he stayed exceptionally active and healthy through a very successful teaching career. I was sure I also had HD throughout the testing process, as did my other negative testing brother. When your father's ways run through your veins, it difficult to know what is HD and what is learned behaviors from an HD father. My brother with HD has chosen to adopt an open attitude and wit regarding his changes. He tells prospective employers (yes, he lost his job) that he no longer has an "A" game (which they expect from the looks of his resume) but still has a good "B" game, and he tells them why. This has allowed him to regain a sense of self with his friends and work companions who were understandably confused about his change in personality (emotional outburts for instance) So many questions remain about the future, for him and his kids. This weekend he and I will attend the Mid-Atlantic HDSA conference outside of Philly and I look forward to meeting other HD families for the first time. It is so difficult to explain this disease to others and sharing with others who understand is a great comfort.

You will definitely have support and people who "know" HD here!! Welcome. How wonderful that you and your brother are negative and you can be so supportive to a positive brother. Welcome

Melissa

Always glad to see new posters on the Mini-profile. It's nice to hear your stories! Whether positive or negative, you'll find great support here!

Hi everyone, I'm Violet. I was tested positive a few months ago. My CAG 42. I am 27 and I'm showing no signs. I have 2 older sisters at risk. They have 6 children all together who are at risk. My Mom started showing signs at age 32 but wasn't diganosed till 42. She is now 59 in the last and final stages.My Grandma had HD, and My Great Grandma. I've searched it and HD has destroied the other side of the family. I have no children. I am getting married in Dec. 2007. I love all kinds of crafty things, Scrapbooking. sewing,drawing, dancing. I also love the outdoors.
I hope that my sisters children don't ever have to suffer with HD.

Violet

Violet, welcome, thank you for sharing your profile. I like sewing too

Welcome violet!!

Feel free to pm me if you like. I am 28 years old with a VERY similar story. HD on mom's side. She was 32 when she started showing signs, diagnosed at 42. She's now 63 and is entering hospice stage. Any time now her battle will be over. I also have 2 at risk siblings. I am married with 3 children, 5 stepchildren and 1 stepgrandchild. Would love to talk to you if you wish.

Melissa

Carla
51 year old mother of Tim 28 diagnosed December 2007 at 27 years cag repeat 46(phd), Mike 34(at risk), and Ray 22(not at risk). I have 3 grandkids ages 16,12,10 (at risk)
Tim and his wife Becky are in the process of attempting to have a child using invitro with PGD. We have raised some money and are holding our big fund raiser(sold out!) on November 17th. Insurance won't cover any of the cost so we have begged, borrowed (but not stolen,Yet...haha) We will raise the money. They have begun the process and we hope to have an HD free baby next year.
This site has been invaluable to me as far as support, great information and hope. Here, we can be who we are. I used the info on applying for SSDI from this site and my son was approved on the first try. Amazing.
Keep the Faith
Carla