Barb, I am now 73; all else is ok. Bob

Thought I'd follow Bob's good example and update my mini-profile:


JL - gene positive (CAG repeat of 43). Age 61 Some balance and irritability symptoms are beginning. No chorea - but do have a permanent limp, due to a bad ankle fracture. 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 Pacific Northwest. I consider having been born in Oregon to be more than adequate compensation for having been born with the HD gene!

Jl, thanks for the update! Gosh, dcb and bob ahead of you, both asked for updates too, and i completely forgot! So your post reminded me, thanks so much

Hi All,
I'm Debbie (48), and my husband Stanley (40) was diagnosed and tested positive (CAG 44). I have two gorgeous step-sons, 19 & 23. We live in Prospect, TN which is on the Alabama/Tennessee line. Stanley no longer works and is somewhat symptomatic, mostly emotional and cognitive, with minimal chorea. I have personally never known or seen anyone with HD. I remember lookin HD up on the web in 1996, and not finding alot of info...now there is tons. I find comfort in that.

Thanks so much for your mini-profile Debbie, helps us all out so much to remember everyone

My name is Sara. I'm 32, an architect & a runner in the midwestern US, who also enjoys gardening and spending time with my husband & 3 dogs. My screen-name was given to me when I ran track in highschool b/c they said I was always similing, even when I was running a race.

My grandmother & her brother had HD, and I recently realized that my Mom has it too, though she and my dad are in denial. Mom and I have never been close, but I'm now realizing part of that may be because of the HD, so I am making increased efforts to spend quality time with her.

I plan to get anonymous genetic testing a soon as I get the money saved, probably a few months. Also looking forward to the counselling that goes along with that (for both myself and how to handle my relationship with my mom).

Being on this site has only reinforced my belief that there are things I CAN do (supplements, trials), to improve my own situation and possibly help others, even if I get "bad" test results.



Edited 1 time(s). Last edit at 11/18/2009 02:09PM by smiling sara.

Thanks so much for the mini-profile Sara!

Hi, my name is Tracy. My boyfriend of 4 years is a pHd. It is an ongoing challenge. The movements and balance issues are worsening, and I'm never sure which behaviors to "blame" on the HD. But we cope!

Hi Tracy, thank you for your mini-profile, and welcome to the forum

Mark from WV USA wife has hd.Cag 43. Symptomatic 15 years her age now 55.Son age 16.

Mark from WV USA wife has hd.Cag 43. Symptomatic 15 years her age now 55.Son age 16.

Mark from WV USA wife has hd.Cag 43. Symptomatic 15 years her age now 55.Son age 16.

Hey mark

********UPDATED PROFILE********

Hi, I am Debbie from Australia, I am 50 with a husband living in full time care at a Supported Residential Service. He has had HD since 1997 & still walking & going out but has dementia.

We lost both of our children to JHD, Kieran aged 7 in 2001 and Bailey aged 11 in April 2009. I now live alone with my devoted dog and 2 birds.

Debbie

Hey Debbie I'll update that for you

Hello,

My name is Lisa my husband has HD. His CAG is 44. He Tested positive for HD in MAy of 2009. He can not work or drive. Things seem to be getting harder and harder for him to do. Does any one have any input on how the stages of HD go. I am affraid he is going down hill fast. We live in Montana so if anyone knows about doctors or support groups here please let me know.

Lisa

My name is Beth my brother has HD. Lisa is my sisterinlaw and brothers caregiver. I am from Montana but live in California for the moment. My mother passed a couple years ago and we see now that she definatly had HD. My aunt died at the age of 63 with HD, and now I can see my moms other sister has the disease also. I havent been tested not sure if I will. I have two boys ages 2 and 7.

Welcome Lisa and Beth, and thanks so much for your intro's

I'm Lucy I'm sure my husband has HD but he is avoiding it. I'm not pushing the issue right now as I'm afraid he will commit suicide when he faces it. He has great depressions that sometimes last days. He hasn't been tested but I have spoken to an Aunt who has been a caregiver for many family members and she confirms the signs I see. I only learned about HD recently so I'm looking forward to all the support and sharing I can get.

Welcome Lucy