Huntington Disease Lighthouse Families

Bonnie, thanks so much for your story, you really made me smile when you said it is his turn to be taken care of now

I am 27 and negative for HD but my mother is a carrier, showing no symptoms. I have one sister who has not been tested yet. Our HD came from my grandmother we believe who commited suicide which we all think was because she did not know what was going on. My mother has two sisters, and three brothers, one which passed away last year with HD. My cousin passed when he was 18 from it also. Everyone on my mothers side is at risk but my mother, uncle, cousin and i are the only ones that have been tested. I do not understand why someone would not get tested if they are at risk.

Thank you for your profile Kristine, and welcome...i think there's many times testing is a good thing to do, but also, many times it's good to wait. No simple answers for such a complex disease...i am so glad you have tested negative



Edited 1 time(s). Last edit at 02/22/2008 06:59PM by Barb.

Hi I am Gemma, 26, and live in the UK, My mum is 48 and has Huntington's Disease. She was diagnosed approximately 10 years ago. Times have been hard with my mum trying to take her life on 3 occasions because of the disease. However life now is alot better with my mum working part time with me (I have a great boss who allows her to work with me) My mum now has a sense of worth again and is alot happier. My sister has been tested and does not have the disease. I do not want to be tested because I feel as though I can live my life now in the hope that I do not have it, whereas if I tested positive for the disease I probably find life difficult. I am so glad to have found this site, and I find many of you so inspiring. Love to you all.

Gemma I am sorry about you Mom .I hope you enjoy the forum . My Best. db

Hi Gemma, and welcome to the forum. I'm in early stages of hd, and have two daughters about your age. I'm very sorry things have been hard with you mom, and wish you the best, you've come to a good place.

Nicole77:
Hi, my name is Nicole and I?m 30 years old. My grandmother was diagnosed (age 44) with HD in the mid-eighties and my mother was diagnosed (age 44) with HD (CAG 46) in 2001. I?m currently attempting to transition my mother to a SNF, which is a frustrating process to say the least. I?ve been aware of my at risk status since I was 10 and have been living as if I was positive my entire adult life (I?m single with no children, very career driven). My two younger brothers (one is 25 and the other is 15) are also at risk but have not tested. I recently decided to get tested and did so on 2-25-08 (anonymously at UCLA). I?m waiting on the results. I?ve been lurking on this web site for the last month on a daily basis and everyone?s story gave me strength in knowing that I?m not alone. I?m looking forward to getting to know each kind and inspirational soul who contributes information and insights relating to HD.

Welcome Nicole

Stacy-NJ

Just wanted to say a quick hi to Nicole and Gemma. Welcome girls!!

Hi,

My name is Heidi, I am 44 with a CAG count of 45. I just been diagnosed in December 07, 2007. My mother was diagnosed in 1998, she died in 2000. My parents were divorced so fast. She lost sight of her self. She ended up in two mental hospital and one nursinghome. Poor woman wasn't diagnosed until 1998, she passed away in 2000. She had 5 children, 4 boys and me, the baby of the family and only girl. We all were raised in a christian home until she got sick. I was 17 when she left WV, I was the only one left and I decided to stay with mr dad. I have a husband, Jeff, one boy Cameron, who is 16 and one daughter, Ciara, who is 11. They have no ideal what is going on. Sometimes I really think it would be better if I just vanish before I really become the evil one. So my kids wouldn't be exposed to this. I do love them so much, I don't think it is fair that I have to deal with this evil stuff!!! So far I am the only one showing any symptems. When I called dad and told him I had HD, he said I couldn't have it, it is in my mind, my brother said get a second opion. See what kind of people I have to deal with. I went to theraphy for 5 weeks. I really needed my dad. He wouldn't come when I requested them. I tried to take my life when I was waiting for my results. This is really tuff to deal with. .



Edited 1 time(s). Last edit at 03/09/2008 06:20PM by Heidi.

Heidi, it's very nice to meet you. I'm sorry things have been so hard for you. My parents were also in denial about my test results, but they really werent trying to be, they just could not grasp that it could possibly be true. It took about a year before they finally "got it". Heidi, i became symptomatic at age 44, i'm 50 now. At first, i was in shock, and didnt think i could ever be happy again, but i am happy now, you will be happy again too. Live positively, take control of hd, don't let it control you Welcome to the forum

Hi my name is Peter, I am 43yrs. old I tested positive for HD in 1/2007 my Cag. is 44, I have no symtoms as of now. I have two children 19yrs. old and 10yrs. old both at risk. We live in Rhode Iland.
I have been taking the creatine 5gram.per day omega3 2000mg.per day. I have also been trying to add things to my diet like dark choc., more fruits,nuts and veggies, I have also added fish to my diet,I have started using skim milk in my coffee.I love to excersise, and have been working out for years. This a terrific web site,
Thank you to everyone of you!

Peter, sounds like you're doing really great, yeah, the dark chocolate is the best part i think

Peter and Heidi,

WELCOME!! While I hate the fact that HD exists, I am thrilled that there is a community where we can all get together and support eachother, since we all understand first hand what HD is like.

It's good to have you guys on board!

Melissa

Hello,

Thank you all. I really was needing somewhere to talk to and not get in trouble for what I am saying or doing. Sometimes it is really hard to get all the support that you really need. I am looking forward to doing some chats.

Heidi

Lynne

I am 53 and my repeat score is 44. There was no history of HD
in my family. My dad saw a neurologist for movements that were
uncontrolled. The doctor didn't think he had HD- no family
history and was in his seventies. Then the doctor decided to
test for HD and he had it- repeat 41. He died when he was 85
2 months after the test. I have 2 sisters. We all got tested.
We all got it. I have 3 nieces at risk. I love living in VT.
I am a lesbian and have no chidren. I have anxiety and
depresson- being treated and some movement.

Hi Lynne and welcome, wow, must have been very hard news with no previous family history. I'm sorry you and your sisters have all tested positive. I'm 50 and in the early stages too, and doing really well. Glad you found us here, this is a great place, with lots of info and hope



Edited 1 time(s). Last edit at 03/16/2008 11:26PM by Barb.

Hi my name is Andy and am systematic for HD - my Dad was diagnosed when he was 55 so we were hoping for later on set but no such luck - I was 40 when I began showing signs. I am still able to be active and drive but not working.

I have two wonderful daughters, ages 11 and 5, that we adopted so we don't have to worry about passing on the gene.

I am also, recently separated. When I was diagnosed, my wife couldn't handle the thought of being the primary bread winner and care taker. Even though I tested 15 years ago, and we've known. We had a crappy marriage anyway, and she couldn't handle this. So she cracked.

My biggest problem now is being alone.

Hi,

I'm Chanin and my father was diagnosed with HD about three years ago. I have a twin sister and a brother and we are all living at risk. My father retired at the end of last year and since then rarely leaves the house; he basically sits in the recliner all day with the dog. My mother still works, and at 67 is my father's primary caretaker. My sister and I live close by, so we do what we can for her. Right now, we just want my father to be interested in life and enjoy his retirement while he still can. He is pretty advanced in the disease, but he still thinks relatively clearly and if we could get him treated for his depression I think he would improve. I am enjoying this message board and am inspired by all of you.

Welcome, Chanin!

I personally have found SSDIs (Prozac, Lexapro) to be effective for controlling the symptom of depression.....