If you would like to, you may post a mini-profile of yourself on this thread, so we can all get to know each other a little easier, and then i will re-post it into the first posting here in alphabetical order. And if you have a personal blog you would like to share too, that would be great!

adkinsmt:
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.

Alice: [www.geocities.com]
My story is that my greatgrandma from Kansas (Rucker) had HD. Many of her children had the disease, but we didn't think my grandma did. She had movements but lived to the ripe old age of 83. Then my brother at the age of 47 showed early signs, and was diagnosed (he died last year in NH at age 56), which meant what we thought was a stroke in my dad (1925-1998) was really HD! So in other words we never thought HD was our family's fate, and yet all three of us children turned out to have it. So none of us had to worry as much as many of you who are at risk do until our 40s when it hit. I am 53 with symptoms but still drive and take care of myself and volunteer at a school and exercise in warm water, and go to see a therapist and also to group therapy each week. I am married with no children. I love to write and paint pictures (which I sell on ebay) We live in Reno, Nevada, yeehaw! OK, I guess I've talked enough now...

Allie:
My name is Allie, I'm 46 and I have HD. My CAG is 41 and I became symptomatic 6-8 years ago. My father was truly not showing symptoms when he died at age 47. I have 2 sisters, only one is at-risk and she has two small children. I have an 18 year-old son who just had his blood drawn for the DNA test 3 days ago. I live in Austin, Texas and will be moving to the San Luis Obispo California area in the fall.

amber1960:
Hi, my name is Amber. I am 46 years old and at risk. My father and three of his 9 siblings had HD. Only one brother is still alive after having the disease for many years. His daughter, my 1st cousin is in the early stages of HD. My older brother who is 49 has tested positive but not showing symptoms. My sister, who has been showing symptoms for the past 10 years has finally agreed to be tested. I am at risk and at this time chosen not to be tested. My dad's 1st cousin was tested a couple of years back (in his 70's) and also was positive. He is now showing signs of chorea. We have a wonderful HD clinic at the University of British Columbia, with fabulous doctors including Dr. Michael Hayden, who recently found a cure for Huntington's disease in HD mice. I am finding it quite overwhelming and hope that this support forum will help me through the rough times. None of us have children, so the disease will end with us. I have a wonderful and supportive husband, Wayne and three step-daughters and six grandchildren.

andersmar:
Hello Everyone, I'm Anders , 45 at risk female. I'm really enjoying this board. thanks.

angel_flirt_83:
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.

Appleseed: I am 58 years old, +HD test, CAG 39, Depression, better with COE Tx. Loss of ability to plan, memory loss that is scary, inability to do my job as a mid-level medical practitioner.. Falling and smashing my left ankle in November 2005. No "fam Hx" of HD. Found my mGGm& her 4 sisters with HD by doing genealogy.Married 29 years, two grown kids at risk. Sis and bro at risk.
Apple

AR:
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.

Barb: [myhdquilts.wordpress.com]
I am 53 years old, and i am in the very early stages of HD. I tested positive in 2004 with a CAG of 39. I live in British Columbia, and my husband Dan of 34 years passed away this year. We have two grown daughters, and one grandaughter.

beachbum:
Hi everyone i would like to introduce myself. My name is Bonnie and would like to chat with people going through the same thing I have been going through all my life. I am 43 year old female at risk, I lost my mother in 1990 and my sister in 1998 and now brother is a care home. So far my older sister Bren which is 58 is not showing of any signs and Iam not at this point. Everybody in family that was diagnost with hd has been in their late 30's. So I have been running scared since I understood everything It's nice to know that Iam not alone.

bernie:
Hi I'm Stephanie, daughter of William, the greatest dad on earth. I am the primary caregiver for my dad now that his HD symptoms are fully in swing. He has a CAG repeat of 45 and is currently 71. We moved him more near me in Wisconsin so that I could care for him. He lives in his own house "two doors down" from us. He has a full day-time caregiver who helps us out...she is our angel. Both my sister and I have been tested and are negative. My cousisns have not been tested. We also don't know which parent the gene came from. Lots to try to figure out!

bettiejean81:
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.

billy:
im billy from scotland.i tested neg 7yr ago my brother is in early stages he is 43 he dont know he has HD my other brother is PHD he is 40 but we have a strong family bond at home and on here so thats good.thx u all

birdgirl:
HI my names kellie
My patrtner of 20 years has huntingtons, he showed sighs about 3 years ago but we did the test last december and it was positive as we expected. His mum passed away at 47 and his grandad also passed away with huntingtons. We live in New Zealand, I work full time at present but not sure how long i can do this...... as i can see in the next few years I will have to become are fulltime caregiver. my deepest admiration for the caregivers of folks with huntingtons......Im scared about the future as I know whats coming its in your thoughts everyday....

bob netx:
I am 73; have a CAG repeat of 40; and, am pretty much asymptomatic. Have two daughters (CAG 40-age 43, and CAG 43-age 45. I have been on a heavy, continuous regimen of vitamins and choline inositol since 1983 (several grams of Vit C and up to 2K IU Vit E); have often supplemented those with HD-helpful 'things'. 50/50 certainly doesn't hold in our line (six in a row plus my two)

bonnix:
My husband Bob has Huntington's Disease. My name is Bonnie and we have identical twin sons, Robert Jr. and Ron. Bob and I have been married thirty-eight years. It has been a struggle as Bob also has Epilepsey which thank goodness is controlled. Bob has had a very hard time since nine years old living with a disease, but when diagnosed with Huntington's in 2006 life has been very hard. He keeps his sense of humour, but I have found him crying at times. He has almost lost his speech and his balance is very bad. Yesterday he fell twice while taking our little dog for a walk. He has promised to use a walker now and our little dog will sit in the basket. Watching him deteriorate before my eyes is so very hard. His mind and spirit are still there but his body and speech are not. My heart goes out to everyone affected by this disease. I wish more people understood the disease. Bob worked as a Personal Support Worker with palliative patients. He was so kind and caring. Now it is his turn. Bonnie

Buddybird:
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

CAdreamer:
HI I'm Ron. I'm turning 40 this week in Southern California. My Mother died July 2006 in an assisted living facility in Northern California. She was 59. A DNA test confirmed a CAG repeat of 43. This explains her Mother's dementia and death at 65. I tracked my Mother's brother down through the police department and found him in a an assisted living facility in San Jose, CA. He is 56. I can only assume he has HD, as I have been refused access to his doctor or health records. I'm a City Engineer and the co-owner of two furniture stores in California. I have had an ongoing problem with fatigue, anxiety and depression, but haven't been tested for HD. My sister is 35 and has two at-risk children in Georgia. Everybody is just kind of waiting to see what's next.. Nice to meet you

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

cougs4ever:
Hey, I am Chris. I am 42, and living at-risk. My mom had HD. She died on September 6th at the age of 73. She was in an assisted living center for the past 3 years. I have 4 siblings who are also living at-risk. My mother started showing symptoms in her mid-40s. She couldn't sit still. It was embarrasing for a teenager. She didn't get diagnosed until she was in her 60s. I think I am starting to show signs of chorea.

Dave Ulch: [www.angelfire.com]

Dave:
I'm Dave from Virginia. My wife 55 (CAG 44) was diagnosed in 2000-- early symptoms in mid-1990s. She has lost almost all motor skills but still speaks clearly and has a great attitude. HD was a complete surprise--likely came from her father who passed away at age 78.

db:
I`m db . I am 53 at risk . My Mom has HD with a low CAG I think 39 , but she is symptomatic . HD is on my Dad`s side of the family also ; although I do not think he has HD ; he has no symptoms and he is in his late 70`s . It`s a long story , but it is on some back posts on this forum . It has only been a few years since we came to understand that HD has effected our family . I have 1 sister ; 2 sons ; 1 grandbaby at risk . As well many cousins . There was 12 in dads family and 1 adobted . There was 2 brothers and 3 half sisters and 1 half brother in my moms family . So a great potential for many to be at risk for HD in my family. db

Dcb:
HI all, I am gene pos {CAG 42}, married for 13 years been w/hubby for 18, we have 2 young boys 1 at risk the other tested in utero Gene Neg for HD. My father has late stage HD, he is 61 and is in a local NH- - I have 1 brthr he is also gene pos w/2 kids both at risk. I am quite envolved in the HD community w/fund raising, awareness raising and research studies. My favorite pass times are: Scrapbooking, gardening and any time I spend w/friends.

De:
I'm 40 years old and am Julie W.'s sister. We knew something was up with our Grandma, but couldn't convince her to get tested. At 83, She died of a stroke/house fire. Both her daughters - my mom & aunt are also positive. I am a main caregiver to my mom - 65 years old CAG 42 - who lives on her own but doesn't drive. I have not been tested. I have 3 beautiful boys 7, 10 and 10. I'm looking forward to seeing HD put to rest!

dustyblues from Guelph Ontario. age 18 (57) CAG 47.not a delicate little old lady yet. Like House I can twirl my cane which is necessary for balance afer a broken toe, and kill people too. I take aquatics for movment disorders and play the piano.
Dusty

edina:
Our family knew nothing of HD until my oldest son began searching for his biological father, whom we had not seen in 20 years, to see if there were any medical issues that might be causing his sisters problems. He found his father in 2005 at a NH in the end stage of HD -he died Dec.06 My daughter tested 2005, CAC 47, 39 y/o in early/mid stage and has 2 children at risk. My son, 42 y/o tested in 2006, CAG 43, no symptoms.

ellenc:
I am Ellen Cameron from northeastern North Carolina. I don't have HD in my family, to my knowledge. My coworker's husband died of HD, as did his identical twin and their older brother. My interest is the histories and genealogies of the families affected by this disease. .

Eric, 46 yr. old caregiver to Teresa (I often call her T). T is 45 and is the late stages of HD. She resides in a NH here in Cloverdale Indiana. We have two sons, Zach 16 and Jake 11. Both are at risk. I post frequently figuring my odds of saying something worth a darn increase with numbers. I have bucked the odds so far but here is to hoping!

errie40:
Hi Annie (gateshead,UK) aged 42, symptomatic 5 years, cag 36,early -mid stages. Three children, one grand daughter. Eldest brother repeat of 34. Still working tho only part time as occupational therapist. HDAC is my life line

FranJ:
My Husband Bill is 47 years old and in the Early stages. We found out about HD purely by mistake as we were looking for 1/2 sister and when we found one we also found out about the HD. The Discovery explained alot and here I am. We Have two children who are at risk Kyle 12 and Dianna 10.We live in Orange County New York. I'm So happy to have found you all it helps with the days that I feel so totally alone.

Fred:
Fred is a "good looking" middle aged man in the middle of America with a middle income.

garbie:
hi i'm taking care of my husband, he is 62 and found out about hd in 1999 although we knew something was wrong long before that. we have been married 35 yrs and have 2 children at risk. they do not want to be tested. both are married with children.i feel like i live with a stranger that i don't even like, it's very hard to look at him everyday and remember who he was then,it has been so long since i felt like a married woman that some days coming home from work seems like the wrong place to go theres home and theres HOME.

gct:
My husband, age 36, is at risk. Our son, age 6, is also at risk

Gordon Robertson,aged 42 from Girvan in Scotland.Single parent to 2 kids,Michael(18) and Kirsty(16),Michaels recently passed away due to JHD,Kirsty not at risk.I host a chat on Tuesdays at 9 pm (U.K) time for families with JHD.Can talk rubbish for hours (but you might also have a laugh)

greeneyes:
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.

Howard, age 53, from New York. My wife died in 1993 from HD at age 33. My daughter, age 24, in mid stage (cag 60). We had no idea about HD as my wife was adopted with no medical history.

Jamie:
Hi-My name is Jamie, I live in CT just a stones throw from NYC with my wife who has HD, Our two wonderful daughters, plus my Mother who came over one day about 5 years ago to help with my wife and just kinda never left. Thank goodness for that. I used to go to the HDLighthouse and have come here since the switch. I tend to drag my feet on things, but I don't think it's that bad I mean it only took me 7 years to finally register here, anyway I just wanted to thank you all for the help and information you have provided Jamie

Jan - Hello to all. I'm 46 years old, Registered Nurse and Writer. I'm in the process of work up for HD. My sister, 43 years old, also a nurse, has the same symptoms and like myself was diagnosed with episodic ataxia-unknown variety. However after changing neurologists, I was told that I most likely have a disorder of the basal ganglia...I'm no longer able to work as a nurse and neither is my sister. I'm scheduled for a PET scan but haven't had the blood draw yet. I'm not certain I should be here but I seem to fit the big picture as far as symptomology. I'm mom to two sons (one Marine and one Soldier) and two wonderful grandchildren. Oddly enough, my soldier was injured/burned in Iraq by an IED. In telling his family history to his neuro, the neuro remarked to him that my symptoms sounded more like Huntington's than EA. Hmmmm, we shall see....

Janesica:
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!

jayb:
I'm a 23yo female from New Zealand and tested positive a few weeks ago. I have 45 repeats and am symptom free. My dad has 46 repeats and started to show symptoms when he was about 40 - he is now in full-time care. I have two sisters who have not yet been tested. I have decided to go through PGD/IVF when I have children in a few years

Jbates:
Hi I'm Jennifer; 26 year old living at risk w a 6yr son, 2 nieces/nephew/3 sisters/cousins/aunts/uncles all @ risk. Co-caregiver to my mom who has late stages of HD. Trying to see what's working and what doesn't. Her choric movements have gotten so intense, and it's hard for her to eat, stand, walk, etc. She just wants to sleep all the time. Her Dr. doesn't specialize so it's harder to get the right cocktail of medicines. It's stressful watching a loved one detriorate in front of your eyes. It's even more stressful to look into your kids eye's knowing you might have passed them the same fate. We remain a relatively happy family and it's broughten us alot closer. I thank GOD for every moment I have with my loved ones. God bless.

Jemi:
Hello Everyone. I'm 33 years old. I have two awesome kids My daughter is 13 and my son is 6. I live in a small town called Waverly, NY. I am HD+ with 44 CAG repeats. I have some symptoms but they are mostly mental at this point. My Grandmother, who I called Nanny & my Mother were both HD+. My Nanny, committed suicide when she got her results, she was 41. My Mom, died of other complications just as chorea was becoming noticeable, she was 39. Feel free to ask me anything! I m not shy. Jemi

JFB:
I'm 50ish, and I am the caregiver for my wife in the early stages of HD. We live in NC. We were the caregiver for her sister for 20 years.
Joe

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!

Joe:
My name is Joe and we live in the San Jose, CA area. I am 44 and have been married for over 21 years to my soul mate. She tested positive over 14 years ago (CAG 46) and is 44 now. We have 2 wonderful boys who are a Sr and Jr in high school. My mother in-law is in the final stages of HD and in a health care facility in CT. My wife has 2 sisters one who is showing some moderate symptoms and the other has not been tested. In all we have 6 children "at risk". My wife has been on very high doses of vitamins and supplements for 14 years. She more recently has been showing symptoms and we continue to fight this disease tooth and nail. She is still able to work and continues to exercise. We really feel the combination of exercise and suppliments has "stayed" the disease for this long. We hope this will continue. I look fowrard to offering you any and all support I can. Thanks to each of you for sharing. I feel like we are not alone.Peace to you all. Joe

jonny0000:
Hi Im jon, 25 from the south west. Like to say hello as a first post and hopefully speak to you all soon. Looking at specialist care homes and nursing homes for people with Huntingtons.

Judy G:
Dear Group, My name is Judy. I have posted with a variety of screen names, including "Tellie" and my whole name, off and on the the past few years. I tested positive for HD five years ago, with a CAG of 42. I am 54 years old, and have not been diagnosed with symptoms (although I haven't been to the doctor for five years). I am a singer, music teacher, and church musician. Until about 3 years ago, I was a long-time member of the Chicago Symphony Chorus. I have been teaching music courses at Columbia College since 2007, but have recently started to struggle with the higher level classes.
Anyway, I have some time now to be a contributor to the forum, so I hope to be speaking with many of you on the list. Judy

julie 03:
Julie from Sydney Australia.Father in law in late stages of hd.cag 44 age 64.He has 7 children 3 which have tested(including my husband)results were negative,1 which is showing signs age 47 but has not been tested.The other 3 have not been tested.

juliew:
Hi I'm Juliew (Michigan). I am 43 years old and at risk. My symptomatic mother was tested last May and is positive with a 42 CAG. She has probably been symptomatic for 12 or so years - she is 65 years old. My cousin decided to get tested because he is contemplating more children. His 40 CAG results diagnosed him as well as his mother (my Mom's sister). I have 2 sisters, 2 cousins, and between us, 14 children ages 1 - 14 all at risk. I am praying for treatments and a cure.

Just me:
My Name is Linda. Grandmother died age, 79, never being diagnosed, She was symptomatic 14 Years. Her sister died in her 70s with Sever HD at last. Mom ( Jean) in late stage, age 81, never tested so we don't know CAG. Been symptomatic aprox 16 years. She is in denial. I'm 63 with a CAG of 38 I'm in early-mid stage. Symptomaric for 7 years. My daughter age 47 is positive, just started onset. 7 siblings never tested. I have 4 children, only one tested positive.
God Bless, Pray for a cure...Just Me.

Jvabean: [wwwjvabeans.blogspot.com]
My name is Julie Sando Teuber. I am know as Jvabean or Upwithhd. I am an old timer within this site. I lost my mother at 64 to Huntington's two years ago this past January 5th. I went through being at risk for 5 years before going through the testing process. I tested negative. I have five family members still at risk. I have walked the road of being at risk, testing, and being caregiver. My blog is listed on this site under blogs A Cup of Jva.

Kasandra:
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.

Katie:
Hello, my name is Katie. I am married with two children and I live in Montana, USA. I am 26 years old. Two years ago my mother was diagnosed with HD. Two months following her diagnosis, my sister and I went through the testing process together. HD has completely changed my outlook on life for the positive and the negative. My mother lives six hours away from me, and it's my hearts desire to have her near me. She is very stubborn and I am predicting that I will have to go the legal route to get her over here. What I expect to get from this website: I expect to make friends, learn from them. I hope to gain insite on the disease. Most importantly, I hope to grow as a person.

kimlinny:
Hi, I'm Kim, my husband is pHD, may be in early stages of HD. He was tested postive (CAG 42) in Oct of 2004 after his sister (one half of identical twins) tested positive in July of that yr (cag 43). Their father whom I never met, had HD, died of pneumonia at age 61 7 years ago. He was never tested as he was symptommatic when he brought his mother (my husband's grandmother) for testing when he was 51. We do not know their CAG. We have no children of our own, my stepdaughter is 12 and at risk. We live on Long Island NY. I second franj, that this is a place that makes me feel comforted, as there are very few in our family that will discuss this. Thanks. Kim

kinkedkt:
im 20 ill be 21 in august...my birth dad and his dad have it
my parents have always known it was a possibility but they finally decided to get my blood tested 3 years ago...my mom decided to tell me on her birthday on june 27, 2009 cause she started noticing symptoms like my arm twitch my parents did it behind my back i feel alittle betrayed but i undeerstand why they did it i have never been stable my whole life 3rd grade was when it really kicked in...i want to be left alone soooooooo bad but im also afraid of losing my boyfriend and my family ive already lost my friends but hopefully everything will get better cause i feel ive hit rock bottom...KATEY

kristine2008:
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.

kt71481:
I'm Katie (kt71481) from New York City. I am 25, tested two years ago with a CAG count of 45. I am an Occupational Therapist at a long term care facility in Manhattan, with a 50-bed HD unit. My grandfather lived there for 10 years, died in 2002 at the age of 80 (CAG 42), and I have a 50 year old cousin who has been there for 10 years. Of my aunts, uncles, and my mother, it looks like 3/6 are symptomatic.

Ladycashel: I am 32 yrs and tested gene positive in August this year cag 43. I am married and have two lovely daughters both at risk aged 8yrs and 3yrs. My Mum has HD early stages aged 51yrs. My Nan died of HD aged 74yrs but had been ill for as long as i can remember. I have been posting since August and have really LOVED and cried with the forum members posts. I have found this site to be a great place to meet people who understand, and to gain more knowledge of Hd. I am really grateful to have found you all.

Laura: Hi, I'm Laura. My husband is 43 years old and in the early stages of HD with a CAG of 44. We have 4 wonderful kids who are at risk....14, 16, 18, and 20. My Mother-in-law has the same CAG count and has suffered from HD for about 20 years and is now in a local NH. There are a couple of extended family members who have HD, along with 2 siblings and 6 nieces and nephews who are all at risk. We live in beautiful Colorado and are trying to encourage each other to live positively and be filled with hope in spite of the challenge of HD.

lauralu1212: [www.blueforhd.com] Facebook:Laura Hillard Quinn
Gene positive, 29 year old mom lives in NH. (MA/NH border) tested positive in 2008, things have been tough since then, lucky to have friends in and out of HD community to talk to... and just realizing this spring who those people are. Once I am someone's friend I will cut of my arm for you... which means sometimes I get pooped on. So, please don't poop on me. Thank You. Went to DC in March for Advocacy (HR 678). This year is second HD convention...Can't wait. I wanted to laugh again when I wrote this... and that has happened thanks to good friends. (The B's!) Keep it comin'!

Lea:
Hi everyone Im Leanne (Lea) I live in NZ with my Husband who is at risk and three children 6 3 and 6 mnths. My husband is 34 and does not want to be tested. His mother is in late stages and living in care for past five years. Her siblings have all tested positive. As far as I know 50/50 is not so here as everyone that has tested has been positve. we have been living in denial since we found out about it, however I am facing it and have found this site the best tool for me. Thankyou everyone for making me feel so welcome...Lea

lisaanne:
Hi- My name is Lisa Anne and I am totally blown away by this message board. My mother is 64 yrs & HD+, CAG40. She started displaying physical symptoms about 4-5 years ago. My grandmother was HD+(now deceased), two aunts HD+(one deceased, one living),and two sisters at risk. I was tested this past April - results negative. My family has felt so alone for so long, and now here you all are loaded with kindness,strength,curiousity,fear,guidance and courage. I live in northwest Montana. Montana is not an over developed state,
thankfully, but it does make it hard to find support groups, etc. in our immeadiate area. It's astounding to me how spread out across the continents we all are. This is the most hope I've felt for our family situation ever. Thank you all for being here.

l-leak:
My husband is 27, I am 25. We live in Utah. He is positive for the gene - CAG 41. Non symptomatic. His father is living on his own still, symptomatic 62ish with a CAG of 43. My husband has 3 at risk siblings, 1 at risk niece, and 1 at risk nephew. I am an artist hoping to raise funds with my art, throughout my life for HD research. The end of March we start our IVF/PGD process and If I were to make any predictions it would be that we would be pregnant with a healthy baby girl this summer. As for the rest.. We are very hopeful for a cure in our lifetime. Though this site still brings me to tears with a lot with fear. Hence the name I-leak...-Sarah

lorettal:
Hi i'm Loretta 51 pos. caq 40 symptomatic for several years. I'm from Morristown, Tn U.S.A. 6 family members pos. all symptomatic.two late stages, one in nh. I tested in 2004 i live alone and still try to take care of myself, but moved here to be real close to my daughter also at risk, and two grandchildren at risk. If i call she is just less than two minutes away. It was so much easier for her to help me if i moved over here. I do get lonely but spend a lot of time reading this message board. It has given me a place to share my thoughts and fears.

lou_22x: [www.bebo.com]
Louise - im 23 years old from Greenock in Scotland. My aunty passed in july 2004 and my dad in august 2004, my sister Kellyanne took her own life after testing positive in dec 2002. Nobody in my family has tested neg that we know of but i tested negitive in august 2006 and i have a wonderful 4year old son Jack.

lpbp011:
My Name is LP and I am 36 with a wife and 3 children, 2 boys 7 and 5 and a little girl 3. I reside in the North East US. I am not sure if I have HD but have noticed a change in my head and starting to become sensitve to balance and judgement issues. It was said my paternal grandfather died over 40 years ago of HD. My father died at age 42, don't know if he had HD or had signs as I have been astranged since bith. I have a great deal of respect for all the people sharing their stories as I have read thru the string and see a wonderful support group and courageous people. I suddenly feel that I am not so alone but still can't explain what or how I am feeling with these slow changes. At this point not sure how to deal with or go about seeking medical help and assistance due to the fear of genetic bias and stemming issues but still am considering testing. I have so many questions but few answers and not sure who to talk to... Thanks for listening to my story... God speed...

ltregidga:
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

lucy48:
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.

Luz:
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.

maahearna:
I am Margie in southern Illinois. I am 38 and symptomatic since 35. My CAG is 43. I have four sisters at risk and untested. Mom had HD--started psychiatric hospitalizations at 39. Started angry outbursts and overt movements around 50. She and Dad died in a housefire in 2002 due to my mother's careless use of smoking materials.
Margie

mackell:
Hiya, My name is Crystal Mackell - My husband and I are from Ottawa, ontario. I have CAG count of 44.My sister and I both have HD. My father is just placed into an medical nursing home and he is only 54. I cry evertime I leave him. My mom has given up talking care of him, but he is better off where he is. I am a full time volunteer to the Ottawa Chapter here in Ontario. I pray every spare moment I have for a cure or treatment for Huntington. The bigges thing that has happen is my sister had a baby girl this summer. It is the blessing our family had in a long time.

Madelyn Clark:
Dolly:
Hi my name is dolly... Prospect Park, PA...My partner of 18 yrs are caring for Alexis her daughter, who just had her 30th b-Day... she was just diagnosed... and Alexis and our 2 grandchildren 4&6yrs old are living with us...We are all hanging in together... we are a family unit...and we are very scared.. not knowing are next step... thought this might be a good begining.. very scared all of us... So glad to be a part of this group... thank you, dolly

Marg 67 years old caregiver to husband age 69. He's mid to late stage, CAG 41 diagnosed three years ago but symptomatic for at least 13. There is no known history of HD in the family. We live in the U.S. in the state of California. Three adult children, one tested negative the other two haven't tested. Oldest daughter died at age 15 from an unrelated disease.

marshap:
Hey Guys, Marsha Pieroni here. Nashville Tn. USA. 3 children- Heather is 33 with CAG of 46- resulted on Jan 22, 2,007. The other 2 or not at risk. Heather met her Father once when she was 15. Heather loves painting, drawing, cooking, and most of all, TRAVELING. She is the biggest comedian - keeps everybody laughing.

Michelle, 28, from Australia...My mum is in the later stages of hd...Im at risk (maybe test this year)...I have two brothers who are gene positive and one who hasnt tested.
I also have four kids who are 12, 7, 5 and 3.

mick:
I LIVE IN NORTHAMPTON ENGLAND. I AM 48. I FOUND OUT I HAD H.D IN JULY 2003. I HAVE 4 CHILDREN 2 AT RISK. NO HD IN THE FAMILEY

miznjoe:
Hi, my name is Myrna & I live in England. I am mum to Rikki who tested positive for jHD when she was 13. Rikki passed away October 25th 2007 age 27.
I have 3 other daughters & 6 grandchildren Who are not at risk.
Finding these sites have been of the best help & support to me.

mjgarcia:
First and for most I am a wife of 20 years and a mother of 4 not so young children...1 step-daughter(21) 2 daughters(19,18) and 1 son (16) and 1 grandson (2 1/2). I am 40 years old and also at risk for HD along with my 2 brothers and 2 sisters... non of us have been tested yet... only family history known is g-grandma, grandma, mother and an uncle that had or have HD. MJGarcia

mmebrady
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!

Moooki:
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.

mpeters:
My name is Melissa. I am at risk 28 year old. My older sister is showing lots of signs, but refuses to be tested. My little brother is also at risk. I have 3 at risk children. My mother has had HD for almost 29 years. She's been in a home for almost 15 of those. 3 of her sibling also have HD. 2 of those have already died, but from Cancer, not from HD. One of them, my aunt Ne, died about 2 hours ago. At least that's one less HD can claim. Of her children 5 of 8 have HD. It just keeps going and going like a black cosmic cycle.

mrspatwolf:
Hi, I'm Pat Wolf, formerly Pat Dushkewich (some of the oldies but goodies might remember me as that).. I am now married to Steve Wolf. Both of our ex's have HD. My ex, Joe lives in Pa. in a wonderful Nursing home and we have 2 sons both at risk ages 26 (in Philly) and 23 ( in NJ). Steve's ex, Kim has hd lives in Michigan here with us now for about a year now. They also have 2 at risk kids, Jen, age 26 (she has a son 3 years old) and Kevin age 19. Kim is doing much better in our home and can see her kids and grandson on a regular basis now. She needs some help with but so far not with much personal care. I help out with Joe as much as I can via phone, or when I go visit my boys in NJ. I run the HDFAMILY group, it's not very active right now but we post occasionally.

mrspippens:
My name is Mrs. Pippens. I tested postive for the gene 2 years ago, CAG 40 I am 45, married to an active duty Marine, and have 2 children, 16 qnd 10, who are the delight and joy of my life! I am experiencing soft symptoms. I am afraid of HD, especially the chance of having passed it on to my children. I have a horse and I love to trail ride. We live in southern california. I am new to this site.

This is mini-profiles A-M, and N-Z is down below



Edited 207 time(s). Last edit at 09/16/2011 10:18PM by Barb.

This is mini-profiles N-Z

NancyinGa. [www.myspace.com]
Nancy-49 recently widowed, early stages, symptoms since 40yrs old,live in Georgia: sister 50 tested neg, brother 44 doesn't want testing(he has 3 kids). Mother,Marge age 74 had Fetal Tissue Transplant..is in end stages and lives with my brother. we were on first HD quilt

Nancy L: My name is Nancy L, I live in Columbus, OH. I have tested negative for HD. My Mother and Father kept the HD a secret from us all of our lives. So did my Aunt. My Mother is living in a nursing home at age 80. She has been symptomatic for many years. Ironicly, my Dad was the one who died early at age 56. I have two sisters CAG's 40, one is mid forty's and the other is 54 with a 7 year old son she cannot take care of. Both of my sisters are on full disability. I have 3 nieces and 2 nephews who are at risk. My brother has not been tested, but has not shown any signs of having HD. I never knew my Grandmother as she died with HD in her 60's ( she was 42 when she had my Mother) and my great-grandmother died with HD in her 70's. My grandmother was one of 9 children and at least 7 had HD. Most died early. There have been scores of relatives in our family with it and even now there are cousins that we are just finding out about that have it.

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

Nila:
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

njhh:
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.....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.....It is so difficult to explain this disease to others and sharing with others who understand is a great comfort.

norab:
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.

Paula B
I'm 62 years old, CAG 37, nonsymptomatic. My father had late onset HD and died of non-HD causes at the age of 72. My brother had mid-thirties onset and died at the age of 51. I live in NJ, USA. I have a 28 year old son and 20 month old grandson at risk.

PaulaH: Hi I'm PaulaH, My fiance is at risk for Hd, he is 44 years old. I see a lot of the symptoms and I now know from belonging to this forum that the things that have occurred in our relationship are caused by Hd. He refuses to go for testing at Ma General, but I have hope that someday he will take this step. He now believes he has Hd as I do and he is taking the suplements. We are now going to counseling and I hope it helps us as our family is pulled apart and it's very painful for me.
I read research on Hd everyday and this forum, looking for hope and answers...paula

pc64:
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!

plej: [www.myspace.com]
Pamela Jackson I am 49 years old early stages, tested positive in August 2005 with a cag of 40.I live in Quebec, Canada and have two children, Jason 20 years old and Katie is 19, both are at risk.

purplegal:
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. 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!

RAY:
Hi I'm RAY (Niagara Falls) i have all the symtons of HD but waiting on test results so don't know if my post belongs here or not i''m 57 use a wheelchair to get aaround i have a difficult time holding onto things so a cane is not much help its more of a hinder. I did some checking and no one on either side of family as far as we know ever had HD guess i just wait and see.

Remig:
Ron (Massachusetts) Last February, 2007, the day after my wife's first grandchild was born, she learned that her ex-husband, the father of her three children, had just tested positive for HD with a 41 CAG count. Since I have a PhD in Biology it fell to me to research the subject and find something hopeful to assuage the panic sweeping their families. Her son of 25 may already be showing symptoms and is now waiting for the test results.

reneeS:
Renee and I'm 26 from Ausralia. My step-father has HD and one have 1 half brother and one half sister who are at risk... neither have been tested yet.

Ron C. in Idaho, 63 Y.O Seems like I have been living with HD forever, Only male to test Neg, in my Immediate Family, The loss goes on, We just learn to Adjust to the Damage in any way possible. i appreciate the Folks on this Site, only wish I could Do more to help.

rtrishm: [www.myspace.com]
Trish, Ottawa Ontario. My link to hd is my husband, who we found out March 12 is phd with a cag of 41. My husbands mother died of complications of hd as well as her syblings except for one who died of cancer. My husbands oldest brother is phd and also hiv pos in the mid-last stages. Only he and my husband has been tested so we don't know for sure about the other two brothers and a sister, they have not been tested. We have a set of twin daughters who just turned a year old as well as six kids between us from previous marraiges.(I have four and hubby has two) 6 girls and 2 boys all together!
Although we expected a positive result it still blew me out of the water to actually hear it. Hubby has a few symptoms mainly temper and irritation. Trying to absorb as much information as possible so I will be able to help my husband and deal well with it. I would like to thank everyone for their kindness and support in the chats and in the forum. Your encouragement has been a comfort and a help. Thank you!

sallydee101:
mY HUSBAND vINCE HAS HD, HE IS 50 IN LATE STAGES WITH A CAG OF 49. HE HAS BEEN IN a nursing home since 2002. We had no idea hd loomed in our night mares and after 2 years of him not working heard the words of hd the first time. a few hours on the net and I knew I had found our night mare.....our kids were about 2,4,6,8,18,16 at that time. Today years later the night mare goes on...the oldest is positve with a gene count of 59. He is serving in the US navy for now. I moved us across ocuntry to Rhode island 3 years ago from Tennessee.

sandycz:
Hi I'm sandy (NC). I am 57 year old and also at risk. My brother was tested 2 months ago and is positive. We noticed corera symptom in 2000, but have no family history that we know of. Paternal grandfather may have been, we are in the process of obtaining his medical records. We are a family with 4 siblings (all in our 50's now) and trying to sort things out as should we be tested or not.

Sandyd:
Hi, i'm finally posting my profile. My name is Sandy my husband Ted is PHD, CAG 48. We have 2 beautiful daughters(13 and 16) at risk. There are a couple other family members who are symptomatic. We too pray everyday that today will be the day they find the cure!!

Sister:
Hi, I'm Jackie. We learned of HD in 1998 when my father, after years of symptoms, was diagnosed. No treatment for symptoms in small town Wyoming. Passed away institutionalized in Vet's Hospital. In retro, seems gf and ggf had symptoms; gf passed in state mental "asylum." 4/7 siblings in father's family have passed - 1 suicide; 3 in institutions. Those of us in at-risk families have not kept in touch. We hear of others' symptoms through the rumor mill of the not at-risk cousins. In my family, three siblings. Two of us decided early not to have children after living with Dad through some really difficult times. Two of us married and had a family. The two who married (total of 7 offspring) are each positive and symptomatic. Needless to say, the two of us who are negative, who have always lived as though we would become symptomatic, are at a loss. We are trying to make sense daily, to provide support, and who are so very grateful for the insight and support offered here. Peace.

SixFootSixBrad:
My name is Brad. I am 30 (2007) and I have a CAG count of 45 and currently show no signs. My father has hd, he is 62 (2007). My sister is also at risk she is 5 years older than me with about the same count. I live in Houston and I have been here all my life. I love it here.

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.

sptx, i live in Houston texas my husband is HD+ cag 47. We are in our late 30's. We have been married for 17 years. He was tested for HD 10 years ago. He has not worked for 3 years. We have three teenage sons (19, 14,10)now at risk. His dad died at 54 (phd), one sister died last year age 42 from heart failure she was also phd. There is one sister that tested positive and is in the mid to late stages of HD. Tons of neices and nephews at risk as well. I work full time, i am a soccer mom , and care taker, organizer, cook, maid, etc....My phd is in the mid stages of HD. Thanks, Shelly

Sray1198:
Scott Ray, am 51 -- 17 years symptomatic with 44 CAG. I still drive, shop, cook, clean for myself, have exercised a LOT for nearly 15 years straight and still love to do a good work out every other day. Love organic food and water. Scott Midyet was my inspiration about exercise. My dad just died last year of HD. He was the greatest person I had ever met. We had never heard of Hd until 4 years ago when I was diagnosed. Franj's story is like mine. Just ran into a long lost aunt who knew about HD in our family. I am an absolute dog fanatic for 25 yrs. I have a black lab mix with me at all times. Rescued him as a puppy and 7 years later, still got him. I can't live without him. He is the most wonderful dog ever.

Stacy:
Hi everyone! I'm Stacy and I have a wonderful hubby and HD-Free twins, Laurel & Roxanne. I am presymptomatic and CAG 42 and joyfully living life! I am willing to answer questions about PGD either visit my website at www.hdfreewithpgd.com or email me at stacybrook@aol.com.

Suzanne: I am Suzanne from Hudson, NY. I have a sister and two brothers in the Laurel Lakes nursing home, and we lost another sister in 2003 at the age of 44. All but one seemed to have developed symptoms a little before or at the age of 30. My oldest brother was around 40 when it became noticeable to him. We lost our father, who was a minister, and our Aunt, (our father's twin sister and only sibling) as well. Our grandmother had HD. One cousin is in mid stage HD, and two others are uncertain at this time, however they have no symptoms. I have a niece at risk. I tested negative a while back, as did another brother. I found this website at the same time as the Lighthouse, roughly, and while I do not get to post much, I am always there peeking in! If I didn't have these places, I don't know what I would have done...such a wonderful thing, to be surrounded by people who know what you are talking about, feel your pain, and rejoice in your happiness. And I must say, Thank you for fixing me Steve!!!

swgirl:
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.

Tina (cameronsmom)
My husband was diagnosed with HD in 2000, He is now 35 in a nursing home. My son who is 5 was just diagnosed with JHD with 95 CAG. My husbands father died in 2005, he was symtomatic for 17 yrs. We live in Las vegas but are moving to Rhode Island later this month to be closer to family. I also have 2 other children at risk.

tmccullough:
Hi. My name is Renee. I am 40 years old and from a large HD family. I have 12 siblings (6 have tested positive and 1 negative - me.) My father is 76 and has HD cag repeat of 40 and in mid to late stages. Johns Hopkins is currently doing a longitudinal study on our family because they are a research hospital, have a nice HD department, and they are interested in very large families such as mine. I am currently taking care of my parents needs as my mother has early Alzheimer's as well. I have also become their power of attorney to help protect them as well. I would be interested in talking with anyone about HD - sometimes I feel alone in this because I'm the only negative in the family (survivor's guilt as they tell me).

tmlarkin:
My name is Teresa, I am 51 years old and have HD. I live in Minnesota with my husband. I have two daughters one HD pos. the other not tested yet. My mom died in 1985 from HD and I have an older brother in the late stages.

tracey:
Hi i am Tracey,32 years of age married mother of 3 children living in the UK. I tested positive 11 months ago.My father had hd and died from it at the age of 56.i am the only person in my family to have the disease,that we can trace back. My children havent been tested as yet.Trying hard to be as "NORMAL" as possible at the mo.Been in bit of denial,bit of depression and quite bad insomnia!!just think this website is the best and my heart goes out to you all and all your families.I have a fantastic and very supportive husband to hold my hand all the way through this.Its a shame to meet such inspirational people under such crappy circumstances!!!!

TracieT: [www.myspace.com]
Hi am I Tracie, this is my first post though I have been a reader for years. I am at risk, 32 in Portland, Oregon. I have a 16 year old daughter. My mother was diagnosed with HD around the time she got pregnant with me in 1974. Her last name was Thomas, she was from Spokane, Washington. I know she had additional siblings but her side of the family has been estranged since her death in 1987. I would like to hear from anyone who knows anything about them. I had two brothers. Both HD positive around the age of 28. One is in assisted care, he just turned 40. The other one passed away accidently this January in Port Orchard, WA. He would have been 39 this year. God bless each of you that have lived this life, its been hard but rewarding also. May god hear our prayers.

Twiggy:
Erica, 31, from Australia....hubby is 36 and phd (nonsymptomatic) and we have three kiddies...5, 3 and 5 weeks. Sometimes I have no idea how I am going to cope but in the end I guess I will.

Will: [www.youtube.com]
My profile. Live in Raleigh, NC, USA. HD Positive, CAG 40. Asymptomatic at age 60. One younger brother, CAG 43 with symptoms that appear to have been arrested with the high dose creatine that he's been taking in a trial at MGH COE. The 50/50 turned out to be 100/0 in our family.
Will

zacky3:
Hello I Am Barb Sipes From Harriet Arkansas My Hubby has HD but not tested. Started symptoms 5 yrs ao but refuses testing. However, He was hospitalized last May for psychosis, and is no Haldol now and not angry or aggressive any more. He has agreed to letting the disability Dr. test for HD, as long as they don't tell him the result. We are in the early steps of filing for disability, and have 2 appt. soon, withtheir Dr.s I am newto this site, and was referred here by a post on the HDSA forum. Thoughts and prayers to all. Barb



Edited 13 time(s). Last edit at 08/18/2011 09:53PM by Barb.

My name is ellenc from northeastern North Carolina. I don't have HD in my family, to my knowledge.

My coworker's husband died of HD, as did his identical twin and their older brother. My interest is the histories and genealogies of the families affected by this disease.



Edited 1 time(s). Last edit at 06/06/2007 04:30PM by ellenc.

Hi Dave,

Congratulations on your new grandchild to be & also on your 30 years of marriage.

Take care
Julie

I would like to mention also, that on Jean Miller's website, from the home page of the HDAC, there is a map link, where people can put a push pin in it to show where they are! I haven't seen it in years, but remembered it suddenly as i was reading all of these profiles.... it is a pretty neat thing to check out!

Suzanne

Ron C. in Idaho, 63 Y.O Seems like I have been living with HD forever, Only male to test Neg, in my Immediate Family, The loss goes on, We just learn to Adjust to the Damage in any way possible. i appreciate the Folks on this Site, only wish I could Do more to help.

Ron C.

Dusty, alias Dusty BluesAM Candlish
Guelph Ontario. Most of the time I am 18 and have taken all the mirrors out of my house. Most of the time I have a riotous sense of humor. My mother had HD from her father. My oldest sister M-J spent her entire life looking for early HD in herself. When she finally got old enough for an all clear, she got breast cancer. Of course my diagnosis of HD greatly affected her because she loved me. My second sister Joan was either murdered or suicided with HD probable at age 42. Joan was very involved with the early committee to fight HD which our Dr. Barbeau was setting up with Marjorie Guthrie.
I have excellent parakenisis which is the ability to work with the chorea. Part of this comes from having a son who saw a pediatric neurologist and I lied about HD in the family, so felt I should always sit still. Another consideration is remembering my mother's movements with disgust and saying " I am neveer going to look like that"
I have been a musician, artist and writer. Typing a book keeps your typing skills up even if you have HD. I lost my ability to hand write in 1996. I have played the piano with passion since I was 8. I believe that the music discipline which I demand of myself has done a lot. I also take aquatics for movement disorders in a warm therapy pool twice a week.I have beeen impressed with Katherine Hepburn as smart woman's idea. I have also been very interested in the nun study. I do jigsaws, and knit when I can. The movement in my feet prevents me from sewing, and my perceptions of the world prevent driving.I have a cane which I can kill someone with, and a walker for outside because I fall backwards when I fall. I can only single task, but I have carefully looked at my environment to be as safe as possible. I have a hearing er Dog named Aslana. My husband is bi-polar and narcissic, so he is not very reliable.
I was too busy to have HD until I got pneumonia twice in one winter. My cag is 47 and I am 57.
When I had my children with the best genetic advice from Dr. Barbeau, I only prayed that we would have definitive testing for HD. That prayer was answered in 1993.
My oldest sister's youngest child is now teaching medicine. Until my diagnosis of HD she was unaware that HD was in the family. She is now an advocate for HD.
I go to as HD support group at the Huntington SOceity of Canada.

Dusty



Edited 1 time(s). Last edit at 03/09/2007 11:05AM by dustyblues.

Pamela Jackson I am 49 years old early stages, tested positive in August 2005 with a cag of 40.I live in Quebec, Canada and have two children, Jason 20 years old and Katie is 19, both are at risk.

I am Margie in southern Illinois. I am 38 and symptomatic since 35. My CAG is 43. I have four sisters at risk and untested. Mom had HD--started psychiatric hospitalizations at 39. Started angry outbursts and overt movements around 50. She and Dad died in a housefire in 2002 due to my mother's careless use of smoking materials.

Margie

Dusty, your story is beautiful and inspiring, i hope many read it. Would you like to make a mini-profile that i can put in with the others? That would be awesome.

Dustyblues from Guelph Ontario. age 18 (57) CAG 47.not a delicate little old lady yet. Like House I can twirl my cane which is necessary for balance afer a broken toe, and kill people too. I take aquatics for movment disorders and play the piano.
Dusty

Our family knew nothing of HD until my oldest son began searching for his biological father, whom we had not seen in 20 years, to see if there were any medical issues that might be causing his sisters problems. He found his father in 2005 at a NH in the end stage of HD -he died Dec.06 My daughter tested 2005, GAC 47, 39 y/o in early/mid stage and has 2 children at risk. My son, 42 y/o tested in 2006, CAG 43, no symptoms.

Appleseed: I am 58 years old, +HD test, CAG 39, Depression, better with COE Tx. Loss of ability to plan, memory loss that is seriously dangerous, inability to do my job as a mid-level medical practitioner.. Falling and smashing my left ankle in November 2005. No "fam Hx" of HD. Married 29 years, two grown kids at risk. Sis and bro at risk.






Apple



Edited 1 time(s). Last edit at 03/10/2007 09:21AM by appleseed.

Jan - Hello to all. I'm 46 years old, Registered Nurse and Writer. I'm in the process of work up for HD. My sister, 43 years old, also a nurse, has the same symptoms and like myself was diagnosed with episodic ataxia-unknown variety. However after changing neurologists, I was told that I most likely have a disorder of the basal ganglia. Per this neuro my symptoms of impaired speech and balance, ataxic gait, impaired cognitive abilities (decreased executive functioning) and short term memory loss,tremors, difficulty swallowing, choking on thin liquids are related to that. I'm no longer able to work as a nurse and neither is my sister. I'm scheduled for a PET scan but haven't had the blood draw yet. I'm not certain I should be here but I seem to fit the big picture as far as symptomology. I'm mom to two sons (one Marine and one Soldier) and two wonderful grandchildren. Oddly enough, my soldier was injured/burned in Iraq by an IED. In telling his family history to his neuro, the neuro remarked to him that my symptoms sounded more like Huntington's than EA. Hmmmm, we shall see....



Edited 1 time(s). Last edit at 03/10/2007 05:40PM by Jan.

Hi Jan. Wow, is there any previos family history of HD, or anything that could have been a misdiagnosis in other generations, like parkinsons or anything? Let's hope you dont have HD, but yes, this is the place to be. Welcome. Thank you for introducing yourself, i'm going to add your profile in with the others, i may shorten it just a bit, k? So it's easy for quick reading Nice to meet you.
PS Oh i just saw your note on the other thread, about previous family history, wow, that does make it confusing, for sure.



Edited 1 time(s). Last edit at 03/10/2007 08:28PM by Barb.

sptx, i live in Houston texas my husband is HD+ cag 47. We are in our late 30's. We have been married for 17 years. He was tested for HD 10 years ago. He has not worked for 3 years. We have three teenage sons (19, 14,10)now at risk. His dad died at 54 (phd), one sister died last year age 42 from heart failure she was also phd. There is one sister that tested positive and is in the mid to late stages of HD. Tons of neices and nephews at risk as well. I work full time, i am a soccer mom , and care taker, organizer, cook, maid, etc....My phd is in the mid stages of HD.
Thanks, Shelly

Hi, I'm Pat Wolf, formerly Pat Dushkewich (some of the oldies but goodies might remember me as that).. I am now married to Steve Wolf. Both of our ex's have HD.

My ex, Joe lives in Pa. and we have 2 sons both at risk ages 25 and 22. (They live in NJ)

Steve's ex, Kim has hd lives here in Michigan in a group home. They also have 2 at risk kids, Jen, age 25 (she has a son 20 months) and Kevin age 18.

We help out Kim as much as we can by bringing her home with us for breaks from the group home. And I help out with Joe as much as I can via phone, or when I go visit my boys in NJ.

I run the HDFAMILY group and hold chats in HDAC's chat room for us on Saturdays @ 8PM

Thanks Barb & Julie

Her name is Felicity Jane and she is beautiful (there again I could be bias you think?) the only downside is they live in West Aust (over 3200 kms or 2000 miles away) so we are long distance grandparents that can be hard in allot of ways.

Dave

Hi I'm Juliew (Michigan). I am 43 years old and at risk. My symptomatic mother was tested last May and is positive with a 42 CAG. She has probably been symptomatic for 12 or so years - she is 65 years old. My cousin decided to get tested because he is contemplating more children. His 40 CAG results diagnosed him as well as his mother (my Mom's sister). I have 2 sisters, 2 cousins, and between us, 14 children ages 1 - 14 all at risk. I am praying for treatments and a cure.

My Name is LP and I am 36 with a wife and 3 children, 2 boys 7 and 5 and a little girl 3. I reside in the North East US. I am not sure if I have HD but have noticed a change in my head and starting to become sensitve to balance and judgement issues. It was said my paternal grandfather died over 40 years ago of HD. My father died at age 42, don't know if he had HD or had signs as I have been astranged since bith.
I have a great deal of respect for all the people sharing their stories as I have read thru the string and see a wonderful support group and courageous people. I suddenly feel that I am not so alone but still can't explain what or how I am feeling with these slow changes.

At this point not sure how to deal with or go about seeking medical help and assistance due to the fear of genetic bias and stemming issues but still am considering testing. I have so many questions but few answers and not sure who to talk to... Thanks for listening to my story... God speed...