Huntington Disease Lighthouse Families

For HD families ... by HD families

Mini-profiles & blogs cool smiley

Posted by Barb 
Re: Mini-profiles & blogs cool smiley
January 25, 2012 09:00AM
Hi. I'm 52 and diagnosed with a 42 count four years ago. I am divorced. Married 24 years, fortunately, I found out after my husband and I split. I wouldn't of wanted to be with him for the pitty thing. Although with the prospective hd I don't think the dating thing is there anymore.
My mother died of HD at 76. She was always had a very strong personality and fighting with everyone. I didn't get that. I have a sister that did and her daughter tested 44. We are a big family. I really thought the test would free me and my three kids. It didn't. I am a skier, golfer and still play softball. I think that has been the saving thing for me. I like what Michael J. Fox said "accept but don't resolve".
Re: Mini-profiles & blogs cool smiley
January 26, 2012 03:47PM
I am Jeanne age 42 from central Texas. My mother died age 59 last June from HD. Her mother died from HD age 64 in 1967. Half of each of their siblings had HD. I tested positive a couple of years ago. CAG repeat 42. I am experiencing the "softer" symptoms. My three siblings are at risk. As are all of our children. I am trying to stay positive. Some days are better than others.
Re: Mini-profiles & blogs cool smiley
February 06, 2012 01:13PM
Hello, my name is Dana and my wonderful husband and 2 beautiful children are at risk. My husbands father passed away this last summer of HD he was in his mid 50's. My sister in-law was diagnosed in August, but I had started seeing the early symptoms about 2 years ago when we were visiting. She was 38 then the same age her father was diagnosed. My hubby will be 39 this year with no symptoms as of yet. My father in-laws mother was the carrier and pretty much all his sibling have or have died of HD. As you can imagine I worry all the time, cry, pray and just am waiting for the other shoe to drop.
Re: Mini-profiles & blogs cool smiley
February 14, 2012 01:50PM
I am 52 and tested positive 42 count three years ago. I am in good physical condition. Been taking the supplements. I love to ski and golf so I think that keeps me free of symtoms. I have three kids that don't support they test. I know how tramatic that can be first hand.
My mother died of HD at 76 and had nine children. Three had died early in their lives from other causes. I am the only one in my family that has tested, except my neice who was 44 and of course that make my sister positive who is definitely in denial.
I'm from Vermont. I came on this sight a year ago and has made such a difference.

Edited 1 time(s). Last edit at 02/13/2013 01:33PM by mare.
Re: Mini-profiles & blogs cool smiley
March 05, 2012 12:16PM
Hi. I am hira. I like movie. Specially Bollywood movie i like very much.
Re: Mini-profiles & blogs cool smiley
March 13, 2012 08:54AM
Lost my best youngest accident - instant death.......age 48...CAG 40...all my plans had been for and with her...she was a wonderful person...always upbeat...always helpful....successfully battled CP, Colon cancer....the knowledge that she had HD but expected to continue asymptomatic (similar to me) for another twenty-five years or so.....we were constant companions....I'm going to miss her...
Re: Mini-profiles & blogs cool smiley
March 27, 2012 04:05PM
Hi my name is Mae. I'm 24 years old with one younger brother (at risk). My mom is hd+. I was just tested and found out I'm negative... waiting for it to sink in still. I needed to know so I could take steps to not pass this on to my children if I could. I have an aunt and two cousins at risk. Hoping for a cure soon.
Re: Mini-profiles & blogs cool smiley
April 03, 2012 09:08AM
Hello my name is Paula. I live in florida but come from cape cod. My husband greg is 50 yrs old and has HD. He has had it 12 yrs now. His dad had it and his brother and sister have it. All his fathers brothers had it but not the sister. Many cousins have already died from HD at early ages. I have three adult children, two are at risk.
I have come to love being my husbands extra hands with practical daily activities. Very precious moments between the two of us. He is so full of grace and never complains about anything. He puts me to shame. I love him dearly. April 12 we will be married 32yrs. We are going the natural remedy route not pharma at all. So far so good.
Re: Mini-profiles & blogs cool smiley
April 18, 2012 01:58PM
My name is Amanda and I have a son, Jack, who is at risk. I found out the father had it when I was 8 months pregnant. So, no possible way to test. I also taking care of my parents. My mom has a cancer called multiple myeloma and my dad has heart and digestive problems. I have two brothers in their 30's and a sister who is 13. We are all very close. I had never heard of HD except for watching House on TV. When I pressured my child's father for his family medical history he sent an envelope with the papers he had received when he tested positive 3 YEARS earlier. I am so angry at him. Especially since he has decided in the past few months to be a father and has now gotten a lawyer to take me to court so he can have UNsupervised visits. Visits with me and my son are not good enough for him. He wants to get my sweet little baby alone. I don't know what to do or where to turn. Y'all have been great answering my questions when I post here. I find that I really do need that extra support of people who have lived with this and through this. Thanks.
Re: Mini-profiles & blogs cool smiley
April 19, 2012 11:24AM
Hi, my mother was diagnosed with HD when she was about 40 years old. She started showing symptoms a few years before that. My grandmother had HD and so do two of my uncles: One was diagnosed in late forties and other in early forties. Both are showing symptoms. I am 31 years old, my eldest sister is 28, and my twin brother and sister are 9. We are all at risk. My mother and step-father decided to have kids by invetro after years of trying (result was the 9yr old twins). Unfortunately, shortly after my mom gave birth to the twins, she started showing symptoms. Her symptoms have progressed quite rapidly over the past 5 years or so. The situation is kind of unique because of the twins; they have been witnessing this progress on my mother and I know that they somewhat lack the mother-child bond due to my mother being in that state. My step-father is having a hard time accepting the reality of her condition and it seems that most other family members tend to avoid being around my mother. I live about 8 hours away from my mother and I have the opportunity to go home to see her about once every 3 months. Everytime I make the visit, I can feel losing her even more. My sister moved to within an hour of her a few years ago so she has the opportunity to see her more often. Both me and my eldest sister have been searching for ways to keep the support and family strong for my mother but we have not been too successful thus far. It is kind of difficult because we all have our own families. My mother herself is still fairly young and is still raising the twins together with my step-father. My sister has a husband and 3 kids of her own of ages 8,6, and 2. I myself have a wife and two kids of ages 7 and 5. We are having a very difficult time trying to balance our own families against the needs of my mother and her in-home family. Besides thinking of how we can support our mother we are often puzzled about the fate of our own families as we reach the age of HD onset. My sister and I both have refused to test for HD.
Re: Mini-profiles & blogs cool smiley
May 18, 2012 11:12AM
My name is Anne and I knew nothing of Huntington's until 3 years ago. I am divorced and dating a wonderful man. On the second date he told me he was dying - he has huntington's. I have researched and learned a lot in the past 3 years. Have also since learned my father has Parkinson's. My bf's father just passed away in March - he had huntington's as well. I have four children - 20, 18, 15, 13 (the 15 year old is a type 1 diabetec) and he has 2 - 18, 17. My life has totally changed. The thing I notice the most is the irritability and emotional irrationality. We have good days and bad days. I am so glad I found somewhere I can talk about this openly and get understanding. I know it is not really him but the disease that makes him act the way he does.
Re: Mini-profiles & blogs
May 29, 2012 08:27PM
Hi everyone, my name is Luh. My brother and I were tested and neither of us have HD. Our mom died of it, along with my grandfather, 2 uncles and now my aunt has it too. Of the 4 children my grandmother and grandfather had, all 4 ended up with HD. Most of my relatives on my mom's father's family had or have it. I grew up terrified of my grandfather's sisters who used to come and visit. My grandmother (who did not have it, but was a realy champion of HD research) used to say that they were "nervous." I knew I never wanted to be nervous.

The first time I ever heard of HD was from the movie, "Alice's Restaurant," with Arlo Guthrie. If I remember correctly, Woodie Guthrie appears in the movie in his bed, I think at the hospital and we the audience realize he has Huntington's. I went home after and told my dad that I had just heard about the worst disease there is, and he didn't say a word, never told me anything. He just cried his eyes out later. I was unaware of why my uncle was so "nervous" until I attended his funeral. His wife explained to me that he had Huntington's at the grave site, and I was furious that nobody in my family could tell me ... not my mom, not my dad, nobody. But my mom probably knew she had it long before we realized, and I believe it terrified her. She would go through fits of depression and excessive drinking, especially after my brother died in a car accident. She went downhill fast from there.

My family reads probably like a lot of HD families, but nothing like "normal" people I know. My mom drowned in the tub, after turning the hot water on herself in a panic. My dad had left her unsupervised for a few minutes, while retrieving her robe from the dryer. She had been very sick for about 10 years at that point. My uncle died from swallowing a plastic bag in a nursing home after having HD almost all his life. He was first hospitalized as a teenager. My grandfather and Uncle Ron died more conventional HD deaths, from pneumonia.

Now I am faced with wanting to see my family after living out of the country for many years, and being terrified to see my aunt's progression with this disease. I have to say it. "I hate you, Huntington's Disease."
Re: Mini-profiles & blogs cool smiley
May 29, 2012 08:34PM
I got tested when I was in my 40s. It is not for everybody and the way I saw it, it could have been a death sentence really. But I found out I was negative, so all those years I worried every time my hand shook a little bit, I could finally let go and get on with my life. It still breaks my heart to see the family members who have it, and we have cousins that won't test. I am really glad I did. I did it anonymously and the counseling they gave before and after was really helpful. I am the kind of person that would want to know either way, so for me testing was the right decision. My cousins have had 5 children between them, and won't test. I tested because I was getting married and wanted to start a family. In the end, I couldn't have children but I am still glad I did it.
Re: Mini-profiles & blogs cool smiley
July 19, 2012 09:30PM
Hi, I'm DeAnne. I've been married 27 years to my 50 yr old husband - pHD {CAG 44} diagnosed in 2007. He's been symptomatic roughly 6-8 yrs prior to diagnosis. HD was an unknown until 2006 - husband's father diagnosis at 72 {CAG 41} - denied anything "wrong" for many years (died at age 78). Traced back to my hubby's g-ma (no diagnosis). We have two children - ages 21 and 18. Neither have been tested - although our daughter wishes to be tested "some time". We've been struggling financially & emotionally - thankfully my husband is on SSDI, but times are tough. Thanks for this forum! I've just recently re-joined!
Re: Mini-profiles & blogs cool smiley
July 20, 2012 04:11PM
Hi, I am new to the board, but I've been lurking for years. HD has taken so many of my family, an uncle, cousin, mother, sister and I have been showing symtoms for about three years. My Neurologist also treated my sister that died so he is familiar with this. I went to a NP at my GP"s during Christmas, because I was finding my medicine strewn about my closet floor. She started the Exelon Patch and it helped my memory until this spring and I noticed I was getting worse with numbers, speech, etc. I also was diagnosed with Mysaentha gravis three years ago, and fibromyalga a few months ago. My Dr. said that so many of those side effects are the same as MG and Fibro. that it is hard to tell how to treat me. Since I am not fidgeting so much right now that we will hold off on the meds. for that. I take so many medications as it is that it might interact and make me worse.
Re: Mini-profiles & blogs cool smiley
August 13, 2012 07:40PM
Hi, my name is Greg and my wife is 50 and is symptomatic to Huntington's. Testing was not available when we married but we always knew there was a chance she too could have HD. Her mother, and three aunties all passed away in their early 50s. She has 2 sisters also positive. We have 3 grown up children who have all been tested and thankfully are negative. It really was an anxious time when they decided to be tested but was like winning the lottery when the results came through. My wife Carolyn suffers from anxiety and depression as well but remains positive. For many years she had shown little signs like slurry speech, dropping plates, unco-ordination etc. but the last 3-4 years she had declined rapidly to the point now where she is wheelchair bound and needs help toileting, eating and dressing. We are very lucky we have great care support and opportunities for respite. This forum is very informative and I am very grateful.
Re: Mini-profile thread
August 29, 2012 01:43PM
Ellenc, you want to know a back ground, I have one for you...My hubby has HD, diagnosed last month but has had symptoms could be for 10 years now. His mother is from Holland and his father is American Indian. From the reports about his father who I never met , he died a few years before my hubby and I met was what I understand a very angry, moody person who told weird stories, the children of my hubby says they remember grandpa shaking a lot. On the other hand on his mothers side, his moms mom was instiutionalized and died there, they say she had a stroke or heart attack or something like that, the family will not be open and honest with my husband. My hubby has 3 sisters who in my terms are weird, never honest and very dramatic, he also has one brother who drinks way too much and has some type of cancer. Lots of grand kids and nieces and nephews, we only told my husbands 3 kids but the word got around very quickly and now a nephew of his contacted him on FB the other night asking questions, I tried to talk to him but he said he wanted only to talk to his uncle(my hubby). I don't know how to get his family to understand what is going on with him and his HD, that he can't explain to them because he is becomming very forgetful and does not speak real well. My hubbys entire family thinks and has thought for years that I am a bad person because of the change in him that I must have caused it, the change only started happening after we got married. I am his caretaker, his wife, in it for the long run, just kinda wish we knew from where the HD came, guess it really does not matter but he would like to know. Feedback please!!
Re: Mini-profiles & blogs cool smiley
September 09, 2012 09:30PM
Hello all, I'm newly returned to the board. I'm 38 and have lived at-risk knowingly for most of those years. I grew up watching Hd change & take the grandmother I loved. She died in a NH at 70+. I'm not married but my bf and I have been together for 20 years this December. We're raising his beautiful niece, age 6 and have no biological children of our own. My mother, now 61, has late stage HD, symptomatic since mid-late 30's and diagnosed pHD in mid-90's. I have 2 brothers and 1 nephew at risk-untested and 1 sister pHD with early symptoms. Hd runs very strong in my mom's family 5 out of 13 siblings are/were pHD, as well as my great aunt and great grandfather. 2 of her sibs tested neg and 5 are at-risk along with ALOT of cousins and their kids. HD lighthouse was a blessing to me in my 20's when I cared for mom at her home and then mine. Over the years, the time I spent at support groups and on-line, HD conventions, fundraisers, etc. declined. Now I'm back on the board cause I've found that it's comforting somehow to know that you all are out there and to be able to reach out as Hd takes more of my loved ones.. bless you all
Re: Mini-profile thread
October 10, 2012 05:52PM
Hi, my name is GregDingo and I am a carer for my 55 year old wife who has manifested her HD "symptoms" for the last 7 years. We have been together for over 26 years and have no children. We live in Sydney and are OK financially so my main worry is copeing with "all" the issues that go along with HD. I find the need to talk about my situation with people in similar circumstances for advice and support.
Re: Mini-profiles & blogs cool smiley
October 14, 2012 08:21PM
Hi, I'm Ann. My husband was tested positive last year. CAG 45. I have two children, boys. Both at risk. Im very scared.
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