Huntington Disease Lighthouse Families

My name is Nila my Husband Has HD ...Gag 45, diagnosed in October 2007 after many years of wondering what was wrong with him...he was adopted so we did not know anything about HD...he is now 46 and unable to drive or work...we have 3 sons at risk ages 24, 22, 16...we live in Post falls Idaho...Nila



Edited 3 time(s). Last edit at 01/15/2010 12:29PM by Nila.

Thanks Nila for the mini-profile

I'm Luz, my husband's HD+ but symptom-free. I can only hope that he stays that way for a long time. We plan on living our good years to the fullest, leading a very healthy lifestyle.
I love reading about HD efforts to find new treatments that will make the lives of the pHDs and that of their families easier. This gives me a lot of hope for the future; hope that I like spreading to the Spanish-speaking community.

Hi Im Janesica 54 yrs old, 4 children, 1 grandchild, Married 31 years
We know now that my dads mother had hd, but was never diagnosed. I always knew something was wrong or abnormal with my grandma, but I thought that was what old people did when they get old... Then my dads older brothers started having difficulty walking and many other things and that is when we first heard of Hd. Now it looks like 5 out of 7 of grandmas children have been dx with Hd.One of my uncles already died from it. My Dad is not showing any chorea signs like all the rest of the siblings, so I was thinking that maybe he didnt have it and so we might be lucky and not have it, Just resently my youngest brother has been having deep deep depression, stubborness that we cant reason with, suicidal talking, paranoia,isolation refusal of any help. Thinking that we are all out to get him. Ive been searching the internet to learn as much as possible and learned that an hd parent can have very little symptons but still pass on the gene. I think we have it!

Hi Nila,
I'm relative new to the forum. I'm originally from Idaho Falls but live in Ohio now. My husband is 63 and won't get tested but I'm sure he has HD mom had it. He has almost all the symptoms known. I deal mostly with rage and not sleeping which contributes to the rage. Am dealing 1 day at a time.

hi, i am Mandeline and I'm 28yrs old. I am delighted to find others that have had or are having the same situations as me. I live in Texas, and my mom will be receiving a dx soon. My grandmother (Bettie Jean) died with HD, as did her sister, and their mother. Grandma's sister has 4 kids and one of the daughters was diagnosed as well. I want to get tested and plan my life accordingly.

Mandeline, i've added your profile into the profil listing, thanks so much, helps everyone get to know and remember each other

4 years ago we learned our family was at risk for HD when my father (now aged 82; CAG 38) and oldest sister (age 59; CAG 39) were diagnosed with HD. Last April my other sister and I were tested: thankfully she tested negative, but I tested positive with a CAG repeat of 40 (age 53). I have two wonderful daughters, aged 25 and 21 who are now at risk. I live in the greater Seattle area.

I guess I ought to update....

smiling sara:
I'm in my low 30's, married with a great husband & 3 dogs. Also enjoy running and gardening. Recently tested for HD, with a CAG of 43, so now I've started the supplements, but am otherwise doing OK at getting on with life (with just a slightly new perspective). My grandmother had HD, and my Mom is in denial. I'm trying to spend more time with her (even though we've never been close), and be there for my parents in general, so they know they can talk to me when they are ready to pursue diagnosis for her. Also have a brother at risk + his 2 kids.

I wish there was a search feature for people to search members by location (if they wish to share).

I am from NH...rest of my stuff is in my profile on here.

~ Laura Q.

I'm Autumn. I'm 27 years old. Mother of 2, a boy 9 and a girl 4. Hubby and I have together for 7 years married just 1 lol. Didn't find out about HD til about almost 3 years ago. Tested H+ 43 cag March 17th 2010. Have two brothers and one sister at risk and now my two little ones. Grandpa died 1994 age 69 from hd. Aunt has HD found out 4 or 5 years ago. She has 3 children at risk. Just told my mother that she has HD bc of my test results. It Went well shes just started to show sympthoms within the last year. Just letting everything settle. I live in south central KY.

My name is nora. I am 25 and at risk with one at risk sibling, neither of us have been tested or has children of our own. My father 62- was diagnosed with HD two years ago even though he has been symptomatic for nearly ten years. The history of HD was kept secret within and among my extended family. I am continually in shock at the extent and variety of damage HD can cause. I am grateful to find a community of people with experience in running the same circles.

hoping4acure

My name is Patty. I first came to HDAC in 2008 when my husband, then 39 was diagnosed with HD (CAG 43) We have 2 kids now at risk. He is in mid stages and stays in a rest home in MA while I have relocated to Pennsylvania to be closer to my family. Though the distance is difficult for all of us, we try to make the best that we can through staying in touch online and by phone.

I thought I did this, but apparently not- and glad I didn't.

I am 29 years old, tested HD Pos in 2008. I was very lucky to find support and my best friend very shortly after on a support site (wearehd.org... logged on once, found my friend...same date of birth, lives a few states away... we became closer than sisters for almost a full year, never really going BACK to wearehd.org. One year to the day from + diagnosis we met up in Ohio. She is from NY, I am from MA/NH border. We flew to AZ together and have been trouble makers ever since. She recently gave birth to a daughter, making her a little more busy obviously, so hdac has helped.)

I came on this board a while ago, lurked, but didn't write. When I did it was mostly a pity party about how no one in my area has HD. Recently, after not only gaining a few HD friends here, I also realized I don't need my life to be all about HD all the time. (Especially the negative parts) Sounds simple, I know...but it took a while and two friends to learn that (aaaand a little bit of crazy medicine...but I digest). (ha. OK, anyone see that? Digest? OK bad joke, but I heard someone say it the other day deadly serious and I almost fell over laughing.)

I am dealing with my "coming to terms" shenanigans issues... (check!) my support issues... (check-ish!) and soon will turn to my family issues. My father is 56 yrs old with HD and in an assisted living home. He is doing great. I hear- I have huge anxiety seeing him. I am going to punch the anxiety in the face though. He isn't in a "HD home/Unit" he is going better than a lot (A LOOOT) of HD patients I know....so I need to knock that crap off.

I sound tough today, because I just woke up. Ha! I am very (? too) honest. . . so don't ask for an opinion (or leave an opening for one) if you don't want one, I will provide mine. I will also do anything for friends, including almost anyone in our community. We are awesome strong people stuck with a shi**y situation. We need people in our corner.

I recently met Brett T, who is local(ish) for me, (he likes long walks on the beach, ice cream...ladies...) and I laughed my ass off. For hours. HOURS! I came home and the next day felt like I did sit ups I was so sore. I needed to laugh. Good man. Only one week after meeting my silly butt was there for me for a huge crisis, more than almost anyone else in my life. For that, I love him dearly.

Brent M is also a good friend who listens to my worries, and always makes me smile...always. No matter what the issue was when we speak. (Usually I forget). These things sound silly but to someone in my situation I hold these friendships so dear to my heart. (Gag! Dear to my heart...is not a Laura Lu sentence) Oh well. Steve I is a good facebook buddy, has good Street cred. (snort).

So, that's me. As usual, TMI....

Oh yeah,
[blueforhd.com]
[www.flickr.com]
Facebook: Laura Hillard Quinn

~ Laura Q.



Edited 1 time(s). Last edit at 05/04/2010 08:59AM by LauraLu1212.

Hello. I'm 17 years old and my grandmother died from HD, my mom has the gene and I don't really know if she started the symptoms, doctors say she hasn't but she has been walking like a drunk (not much) and is always moving her eyebrows, among many other little things. My oncle has HD and has started long ago but doctors thought he had a depression or something (about 8 years ago), and I don't really know what he's been taking (nor my mom). My aunt died from it when she was about 37, and all her 4 kids (my cousins) are at risk like me. None of us (the new generation) got tested yet. I feel alone about this disease and it looks like my mom's doctor didn't give the family much information, I mean they haven't even talked to us - (me and my dad) and it's very tiring, and we lack support. Maybe it's because we are 'used' to have HD around.Well, testing doesn't scare me (well maybe it does.) but it's not the right time to do it, I guess my mom needs me first. I don't give it much though anyway, once in awhile yes but not always, life is to live not to think about what is going to happen or to think about what could happen. Anyway, I like to read, watch movies, play the piano, listen to music specially The Beatles and The Smiths, take photos, lomography and I'm finishing high school next year. I want to do something in the movies and television industry (image edition or production), but I'll problably just go through something else on college first. Oh and I live in a non-english speaking country so sorry if I make any grammar mistakes.



Edited 3 time(s). Last edit at 05/21/2010 09:24AM by Moooki.

Hi Moooki. Support is pretty hard to find, especially for a 17 yr old. This is a pretty good place to start. I agree, 17 is not the time to think about testing too much. You know it's there to be done when the time is right. But you can't ignore HD either with your mother. I get that. My two sons grew up with it with my wife having it. Kids are the best at facing it really. If ya don't mind me calling you a kid. Everyone under 30 is a kid to me... Doctors get the symptoms, but not how symptoms affect you personally as a son or daughter and future caregiver, helping with your mom. Three o"s in Moooki... that's a a toughy.

Hey Mooki, so nice to meet you

Thank you Eric and Barb, nice to meet you too. =) I don't mind if you call me a kid=P, and thank you for telling me that. It's nice to have somewhere to go and read other people's experiences, it's more supportive than doctors I think, at least I'm getting more information here.

Well doctors have about 20 mins twice a year to do their thing. HD is a just so all over the place... they can't really help ya much sort through it. It would be nice if they could.. but they can't. Some of them are not even people persons... and not sure I want a lot of them to even try too hard...

I'm new to the boards and I'll be posting as "swgirl". My mother is HD+, as was her mother, two sisters (one deceased), and an Uncle on her mother's side, to the best of our knowledge. I have two sisters, one of which (youngest) has been tested and is HD negative, thank the Lord. I am scheduled to begin my testing on August 26, primarily because the stress of not knowing has become greater than the reality of the results. I am extremely grateful for this website and pray every day for the Grace to deal with my results when I receive them.