Hello.
I am so happy to have found this site and wish I had done so sooner.
I am 46 years old and was tested positive @ 6 years ago. I got tested when I found out my father had HD.
I didn't feel like I had a choice as far as testing was concerned because I had three boys under the age of 13 and was a single mother. I felt like I had to be proactive and educate myself and plan, for their sake.
When I got my test results, honestly I felt relieved. Because I knew there was something wrong with me for a long time but I just didn't know what! At least this gave me a tangible answer.
My boys are now 19, 14 & 12. I am symptomatic. I have also in the meantime found a wonderful man who has supported me and loves me, although that can be challenging sometimes.
My 2 older sons know my status and that they are at risk, but my youngest does not because he is so young and I do not think he can handle it.
I have good days and bad days, but I consider this to be a good day because I have found this site/community!

Hello.
I am so happy to have found this site and wish I had done so sooner.
I am 46 years old and was tested positive @ 6 years ago. I got tested when I found out my father had HD.
I didn't feel like I had a choice as far as testing was concerned because I had three boys under the age of 13 and was a single mother. I felt like I had to be proactive and educate myself and plan, for their sake.
When I got my test results, honestly I felt relieved. Because I knew there was something wrong with me for a long time but I just didn't know what! At least this gave me a tangible answer.
My boys are now 19, 14 & 12. I am symptomatic. I have also in the meantime found a wonderful man who has supported me and loves me, although that can be challenging sometimes.
My 2 older sons know my status and that they are at risk, but my youngest does not because he is so young and I do not think he can handle it.
I have good days and bad days, but I consider this to be a good day because I have found this site/community!

Hello.
I am so happy to have found this site and wish I had done so sooner.
I am 46 years old and was tested positive @ 6 years ago. I got tested when I found out my father had HD.
I didn't feel like I had a choice as far as testing was concerned because I had three boys under the age of 13 and was a single mother. I felt like I had to be proactive and educate myself and plan, for their sake.
When I got my test results, honestly I felt relieved. Because I knew there was something wrong with me for a long time but I just didn't know what! At least this gave me a tangible answer.
My boys are now 19, 14 & 12. I am symptomatic. I have also in the meantime found a wonderful man who has supported me and loves me, although that can be challenging sometimes.
My 2 older sons know my status and that they are at risk, but my youngest does not because he is so young and I do not think he can handle it.
I have good days and bad days, but I consider this to be a good day because I have found this site/community!

My name is Marie, I am sole caregiver for my ex tho we were married 32 yrs till Spring this yr. he was phd in 2002, retired disabled 2004. Always was a quiet man, hard working, tried his best to help parent our 4 children, but I always felt I parented him too. CAG 43, many odd things since he was 20's, progressively worse till we nearly divorced 2001, when our kids opened my eyes to HD as his mom had just been diagnosed. Her mom was thought Schizophrenic. I'm amazed at many stories here each person so different in the stage of their experience with this disease. I am losing the battle to continue to care for him....I work full time so I have health care of my own, and everything else just gets done when I can do it. I feel strongly that my fibromyalgia is caused by the feelings of despair I hide everyday. I want to experience life but feel I won't be allowed to until the end. He is lethargic, sleeps many hours, watches tv. Possessive of his money and so child like its hard to treat him as an equal, but I do what I can and when I can't I take drive or I find my tequila to numb the pain of both my physical world and my muscle pain. He hates that I drink, but he doesn't socialize with anyone, an I don't understand why it bothers him. If I'm not drinking I can't stand him, but need to be here for his care. Our children avoid him because of his childishness and the reality that they are at risk. Our oldest boy 31 single, daughter 30 married 2 children, son 28 single, those 3 have not tested, our youngest boy 27 tested negative is married an expecting one boy. I cry everyday, hate this and increasingly find it hard to find joy in life except for my 2 grandkids at risk also. Need support but have no time, need a light at the end of a tunnel.
My therapist says I'm strong but I feel so weak.

Hi everyone, im 21 years old and im at risk of HD. I have recently decided to get tested and im starting the testing process next month!

My dad was diagnosed at 35 and sadly passed away this year.

I have made a blog to write about living at risk of HD and being tested www.me-vs-hd.co.uk





Edited 1 time(s). Last edit at 11/06/2012 08:50AM by melissa1991.

Hi,

My name is Robin. I'm a 33 year-old at risk mother of a 14 year-old daughter and 11 year-old son. My father was HD+ and passed away at the age of 50, just like my grandfather. I have two older brothers, one of which is also HD+, and a younger sister with one child. I had the opportunity to undergo genetic testing about 15 years ago when I was pregnant with my oldest... but after meeting with the genetic counselor, I decided against it. It is something I have been thinking about with increased frequency lately. I've come here to meet other people that have gone through or are still going through the same thing, and because I feel like I have no one to talk to about it. My husband of 15 years isn't very supportive on the matter and most times won't even talk to me about it. So, before I ramble too much (Is it too late?) just........ Hi! I'm really looking forward to having someone to talk to.

My husband is 53, he was diagnosed with HD early this year. My name is Sherry.

Hi,

My name is Nancy from Quebec city, Canada. I'll try to resume what life is bringing to me, but first of all i have to mention that french is my first language, so forgive me if sometimes it's harder to understand my writing.

Year 2012 is the year that i try to make sense of. Im 46 and the dream of my life was to have a horse in my yard. I always thought that i would succeed at my dream only when i would retired. But in january 2012, someone offered me this horse, Shannie 18 yr, that i couldnt refuse, and the reason of this offer was directly related to the owner illness, HD. She is only mid 30's but very advanced, she started when she was 17 and her dad died at 47. Plus, she's the sister of my cousin's husband.

Here is why life for me seems surreal, cause in october, my 2 kid's father after a fall, was tested and received the HD+ result dec.20th. He's 55, and for 5 years we didnt understand what was happening to him cause we noticed he was changing, but the only word that came to our mind was that he was getting "weird". We been divorced since 2001.

We have a son's 24 and our daughter is 20. Alexandra wants to be tested, but my son, we dont know, he doesnt want to talk about it for now. Im worried about him, cause he seems to get more and more introvert, im trying to reach out to him, but it doesnt work well.

I dont understand what life is trying to tell me, sometimes i get so mad and some days i just cry. I dont understand why in one hand ive been giving my dream and with the other hand, life is threatening what is the more precious to me, my 2 kids. How come with those kind of statistics, HD would be so close to me like that ?

Thanks for reading me and that is where we are now...

Nancy

Thanks for such a knowledgeable post. All the points are very clearly defined. Whole work is appreciable.

Hello everyone, My name is Kim and my 24 year old daughter has JHD her CAG is 54. Her Chorea is quite bad. In the past 3 weeks she has falled about 5 times. Her anme is Amethyst and she has a liitle girl that will be 3 end of this week. Amethyst's father passed roughly 12 years ago. I am working with Upstate NY HDSA to get a fundraiser going for my area, not much awareness in this small town. Have wonderful day everyone!

Hello my name is Karla, I am from New Zealand my husband tested positive 2 yrs ago cag 42 his brother cag 43 there mother who is in the late stages had a cag of 44, I believe my husband who is nearly 46 is showing some signs mostly irritability, I would love to be in contact with anyone in the same situation.

Hi all My name is Mark age 53 with a CAG of 42. Father died of HD when he was 75 but seemed to linger as a vegtable the last 7 years or so Currently able to work but having more issues with motor skills depression and memory. Have 1 sister at risk. 2 Uncles that had HD and are gone. Very thankful to those of you that keep this site going!

Mark

Hi! I'm currently waiting for the HD test results (it's been two weeks). My family is very complicated and it is unknown if I have family history of the disease. I became symptomatic last year (at age 30) but since January of this year (2013) I have been getting progressively worse. Today is a "good" day...I can type. After having speech, memory, and cognitive problems, I also developed jerking movements including my eyes and have many days where I'm not able to swallow even water. I went to several neurologists (thinking at first it was MS) and was told I had mental issues until one sent me to a neuropsych. After testing she said she recognized the symptoms of Huntington's and suggested I get tested asap. My neurologist said she wanted to wait and have me tested for Wilson's disease (however I had already been tested as I have hemochromatosis). I went to my primary care dr and got the test. Now I'm waiting. I'm actually more nervous about it coming back negative and still not knowing what to expect and what is wrong. I have a couple questions for those of you with more knowledge. 1.) How long does it take to get test results? 2.) Does anyone else have issues with drs saying they are making up symptoms? 3.) Has anyone had any speech issues such as an accent? I developed an accent in January around the time my symptoms worsened that has been called anything from Swedish to Welsh. No one can figure out why it started. I also have slurring, switching letters and words around and have "failed" several neurological exams with speech. I guess I mostly have a lot of questions but I'm hoping I can find answers soon. I also found it very helpful today to read a couple articles that actually sound exactly like what I am going through. Tenille

Hi,
my name is hopevale and I care for my partner of 7 years he has mid stage huntingtons disease, although he doesnt have the chorea. Things have been especially tough the last couple of months as he suddenly worsened. I work full time and we have a young son which we both love very much. I am very scared of what the future will bring and if I will be strong enough to handle it.
Thanks for listening

Hi
My mom died of HD in 1996 after showing symptoms at age 40. Her mom had it before her. Mom had no brothers or sisters, but she had 4 kids. Kid #1, age 50, did not get tested, no kids, no symptoms. I am 49, did not get tested, no symptoms, 2 kids at-risk. Third kid died of cancer
at age 42, no symptoms then, 3 kids at risk. Last kid, age 43, got the test, CAG 39, married, had a risk-free kid. Symptomatic for about 3 years, on meds for a little over a year now, lost job, house, insurance, wife and kid. Can't find a Neuro or a Phych to take on a HD patient or a self-pay. I pray that this disease can end for my family in this generation.

I'm 31 y/old, my fiancee Woody have CAG 44. He is still in early stage and have travelled twice to my country , Philippines, alone. A tic in his left eyes is the only visible symptoms as for the moment. He have little imbalance sometimes. His a good organizer, some details are need to be written though. I love him and that includes whatever he have with him. He have three ferals and all are 50/50 at risks. He has John as his social worker and he is regularly seeing his Psyc Doc. I am emotionally ready for it, and reading researche articles and this forum helps me a lot. Proper mindset as being mrswoody would do best for all of us. I made a right choice. I always see thing in positive way and I anticipates whatever happens. Next year I be marrying him and his HD. We will be together forever side by side in our "HD" journey. His fight is my fight.

Texas Vicky 48 yo here-married to Dave (58 yo) 22 years. Dave was recently diagnosis (CAG 42). His mother and uncle both Cag 41. He has 4 at risk siblings (none have tested at this time) 3 at risk sons and 1 at risk grand daughter. Many symptoms: falls,swallowing, chorea,depression, anger, anxiety,OCD, facial contortions. On disability from work. His mother in assisted living-mostly apathetic, but also mostly independent. Dave seems to have gotten the symptoms sooner and harder... Heartbroken...

Abbotsford BC. 33 year old married to my wonderful husband who just recently tested positive (36 years old CAG 50). His mother passed away in 2005 from HD. His oldest sister has HD. Husband has a lot of the chorea, but his mood and attitude are amazing. Always joking around. I am thankful for that. We don't have children. Found in 2009 I am infertile, and honestly, kind of glad. Life is hard, but my husband's attitude clears up so much and makes me giggle.

Hi all, my husband is 51 and has HD. His dad and brother both passed away from this disease, his dad at 53 and his brother at 35. So far it has been an emotional fight. He does not have a lot of chorea, with the exception of some facial grimacing, however the cognitive and behavior problems were big family concerns. He is now on anti-depressants and mood changing drugs, but he sleeps up to 14 hours a day. We try to keep any stress away to avoid anxiety attacks. I try to remain strong and read any information I can on this disease. Reading others personal stories helps me feel that I am not alone. We have one son who is at risk, but does not want to be tested.

Hello everyone..I have been happily married to my beautiful wife for over 20 years. We are both in our early 40's. She tested positive June/12 with a repeat of 43. We have two wonderful daughters(18,15) and live in Mississippi. We have participated in a couple of trials so far and are praying everyday for a cure. God bless you all.