IPbp, if you have questionsjust post them-start a new thread. You can get lots of answers and ideas and this is a wonderful family to be in. welcome

Lp, was nice chatting with you the other night, i'm glad you found your way to the forum...welcome

And a beautiful morning to you, Barb.
I am 70; have a CAG repeat of 40; and am pretty much asymptomatic. Can't say the same for two beautiful, wonderful daughters (CAG 40-age 43, also has CP..., and CAG 43- age 45 - three at risk children). I have been on a heavy, continuous regimen of vitamins and choline since 1983; have sometimes/often supplemented those with HD-helpful 'things'. We track HD back paternally: my father, his mother, her ?/?. 50/50 certainly doesn't hold in our line (six in a row plus my two)



Edited 1 time(s). Last edit at 03/30/2007 06:33AM by bob netx.

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

I'm Renate Brown from langley BC. I just lost my husband John to HD on December 12, 2006. He was first diagnosed in 1999 by a Neurologist and in May of 2000 by the HD Clinic. His dad and his dad's sister had HD and both passed away from cancer which they got after they had HD. We didn't know about the disease it was kept very quiet and even after he showed symptoms nobody told us. I have 2 children and 2 grandchildren from a previous marriage. John and I had no children. He just turned 41 when he died.

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.

wow Katie thats an amazing glimps into your world...lovely to meet you..Michelle

Welcome, Katie.

Hi everyone, this is a good idea, Barb. I just now read the list and find so many interesting lives touched by HD! 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...

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.

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

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

Hi, I'm Dee. I live in the UK, where I look after my husband Roo, who is 45 and is just entering the middle stages of HD. I have 4 children, 19, 16, 7 and 4. The younger two are at risk. Some days are OK, and others are a struggle. We're part of a great HD group that meets locally.

Hello,

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.

Nancy L

HI I'm Heather and I'm from Australia my husband Glen is 35 very early stages and has a cag of 50 we have three Beautiful children Bianca 7 Maddison 3 and Ethan 2 all at risk

Barb, Thanks so much for making this miniprofile thread. I periodically print it out and keep it by my ciomputer for reference.

Heather, Thanks for posting your profile.

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!

Hi Heather

another aussie on here

were abouts are you from

BTW my hubby is 36, cag 43, at the moment no symptoms and we are from newcastle in Nsw and have three kids also , aged 5, 3 and 8 weeks

hope to see you around

erica

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!

Nice to meet you De!