Huntington Disease Lighthouse Families

For HD families ... by HD families

Mini-profiles & blogs cool smiley

Posted by Barb 
Re: Mini-profiles & blogs cool smiley
October 05, 2013 11:38PM
Hi, my husband has been diagnosed with HD (CAG - 45+). He just turned 52 years old. Speech patterns are really bad, but he does not have many "movements". You know what I mean..... We are currently in one of those "trail clinics" at the Cleveland Clinic in Cleveland Ohio. We are not sure if this is a "placecbo" drug or not, but I'm going to try anything at this point to help him. The test drug is "Creotin", which is a protein that is used in many people that play sports. He is been on this study drug for about two years now.

His sister lives in North Carolina and she is on the same test drug. He had a brother and sister who passed away due to HD.

This disease was carried on by this mother (also passed away from HD). She was English. HD, I believe, was originated in England, if I'm not mistaken.
Re: Mini-profiles & blogs cool smiley
October 12, 2013 05:12PM
Hi Thorflower, Its interesting to me how you believe HD originated in England as my HD pos mother in law is English, her mother passed away with HD (we only know that as my mother n law sent her mothers brain to be tested) at the time of all this my mother n law refused to believe she could also carry the gene and refused to be tested. My husband tested pos just over 2 yrs ago now, we have 2 children I worry for them daily as I watch this terrible illness take my mother n law, my husband is 46 with a cag of 42, he gets very irritable very easily. We live in New Zealand
Re: Mini-profiles & blogs cool smiley
October 31, 2013 08:47PM
Charise in her early 30's living in upstate NY. tested positive in 2010. Anybody out there in upstate NY?
Re: Mini-profile thread
October 31, 2013 09:11PM
Hey Brad,

Whats up? Are you still out there?
Re: Mini-profiles & blogs cool smiley
November 01, 2013 10:19PM

I live in Ohio and my husband was diagosed with HD in 2008.

He is currently on disability and we are having a really rough time of it.

I'm trying to get him on Medicaid (he does not qualify for Medicare) he is only 52 years old. I am currently unemployed.

We pay out of pocket for incontinence supplies ($100.00 a month) and they don't even work. He gets up in the morning (also during the day) and he is soaked. My house is does not smell so good at this point. Help!

His family has pretty much dismissed him and most of his friends as well. Not sure who to turn to at this point.

We had a bunch of friends, but now that he is sick, everyone is turning their backs on us. Fair weather friends, I guess, is what we had.

Trying to hang in there, but he is all I have and vice versa. I refuse to put him in a nursing home.
Re: Mini-profiles & blogs cool smiley
December 20, 2013 06:03PM
Hi, i'm Christine. A 37 year old female at risk. I am married with 2 boys ages 4 & 5. My father passed from HD when I was 16 years old. At age 40 he found out he was positive, before the genetic tests were available. He died at age 51 from stomach cancer but my guess was he was close to the final stages but he only really had movements. I have a 47 year old sister who tested positive recently. Her case very different from my dads. She has a lot of the mental issues and movements but not severe. I have a 35 year old brother who tested negative. We know that my Dads dad dies from HD.
I have struggled with getting tested, but at this point I choose not to. Right now, I am trying to help my sister since she is not capable of making clear and rational decisions but I am struggling with this. I fear that I will test positive, but I think most people who are at risk have the same fears.
God bless everyone that lives with HD, knows someone or is taking care of someone with HD.
Re: Mini-profiles & blogs cool smiley
March 02, 2014 03:47PM
Hello! I am a 37yr old mother of 5. It was discovered over 20yrs ago that my grandmother had HD (on autopsy). Nobody ever spoke of HD in my family until recently (last 5 yrs or so). My grandmother was the only one that I had ever seen with symptoms (she didn't speak and she had difficulties with her chorea, needing a wheelchair. She passed away in a nursing home when I was an early teen). I have 6 other aunts and uncles, as well as many cousins who also have children themselves. I have a sister who has 3 children herself. I only recently found out that 2 aunts have HD and one cousin has it (thru blood test). One other cousin tested negative. The rest are unknown. My father has been displaying symptoms for some time; mostly cognitive and behavioral. This past Christmas, he fell twice and it became apparent that he is having motor problems now too. He is 74. My grandmother was 79 when she passed. My one aunt is in her late 60's...
Growing up, other than my grandmother, we didn't see this disease. It seems to have hit us all at once like a brick wall the last few yrs with my aunt and my father in particular. My father has not had the blood test yet but we know what's going on... I'm pretty confident that he is gene positive, because I've started noticing symptoms in myself as well.
Right now, my sister and I are focusing on care-giving for our father, who is now back home after a 7 week hospital stay from his falls. It's difficult because he has changed so much in the last couple of months. He is becoming harder for us to handle on our own, but we are trying our best. All the while, we have this disease looming over our own heads, since we cannot test for it ourselves until we have our father's results back (hopefully in the next month or so).
This is certainly NOT how I expected my life to be right now. I feel blindsided. My father, aunts and uncles all knew of my grandmother for yrs and nobody told us kids. I feel lied to and cheated. I worry for my children and my nieces and nephews and my cousins children. I had plans for my life once all of my children were in school (my youngest starts next yr) and now all of that is on hold. I feel like HD consumes my life in every way, every day.
I registered for this forum a yr ago... it's difficult to reach out for help since nobody in my family wants to talk about this. My father does not want my sister and I saying anything about HD to anyone. I don't feel that is fair. They all kept this secret for so many yrs; why should we do the same? Don't we owe our children more than this?
I've recently become involved with the local chapter of the HD society and they are great and so helpful! My father doesn't know, but I feel I need it... the support meetings alone are worth the secrecy from him.
I look forward to meeting new people who are in the same or similar situations. I want to learn as much as I can about this disease so that I can share as much information as I can with my immediate family and friends. I don't want my children to get to my age and feel the way that I do right now.
Re: Mini-profiles & blogs cool smiley
June 06, 2014 12:09AM
My name is Jillian. I am 25 years old and was diagnosed with HD 5 years ago. I'm new to the forum, never really ventured into any type of support group activity but lately I feel the need to. My symptoms are starting to show and I'm scared and alone. My Mother's great grandmother, grandmother, and mother all had HD as well as my mother and her brother. She passed from it in 2012 at 59 yrs old and my uncle passed 6 months after. Once she started getting really sick I decided to get tested. Still not sure if that was a smart move or not because sometimes i find myself obsessed with it. Everyday it haunts me. Every time i trip or drop something i start to get anxiety. Recently I've been losing feelings in my hands and getting tingling sensations from my shoulders down. I worked at Allied (in care facility for the intellectually disabled) and quit yesterday. I was being told by supervisors that my motor skills were lacking. And yesterday I was told that my speech was slurred and they had thought i had been drinking. (I also have epilepsy which i take Keppra for and I'm being treated for migraines as well). After being told that my motor skills were off and my speech was slurred and they wanted me to be escorted by security to a local hospital to take a drug test and had thought i came to work drunk i was very offended. I have been consumed in these new symptoms to begin with and to be approached the way i was by my supervisors made it all that much worse. So i got up and left. I have a 3 year old and now no job and my HD is progressing. I can't control my feelings, i cry the majority of the day, i am extremely exhausted but have insomnia, i get very moody. I have another appointment at the end of the month to talk about the progression of the disease and the new symptoms. I just need someone i can talk to who knows what i am going through.
Re: Mini-profiles & blogs cool smiley
June 11, 2014 11:05AM
Greeneyes, I was wondering if you were still on the forum? I also live in Tennessee
Re: Mini-profiles & blogs cool smiley
June 24, 2014 09:24AM
Dear All
Im D and my boyfriend is J and J has been diagnoised with Huntingdons disease less than a week ago, painful as he had originally been diagnoised with Parkinsons 6 months ago (hence as if that wasnt bad enough...) and so overwhelmed by this. Both in our early 40s and both - overall - healthy people. We were not only shocked but both at a loss on how to cope. I live in Europe so thank god my countrys medical system/housing system provides care regardless of your income, social status, contributions etc. This I see is not the case and more difficult for some.

We dont know where this illness in Js family is from - as noone in the family has every displayed any signs. I just see my boyfriend a kind, sincere, honest and moral person and wonder why this is happening....


Edited 2 time(s). Last edit at 06/24/2014 01:11PM by Dece.
Re: Mini-profiles & blogs cool smiley
July 10, 2014 10:13AM
I live in Louisville, KY and my wife has HD. She is 52 years old and has been showing symptoms since she was 41 years old. She has never had a blood test so we don't know what her CAG count is.

Her mother died of HD, at age 66, after being in a state mental facility for many years back in Virginia. Her older brother died from HD complications a couple years ago at age 52, and she has one surviving brother (younger) who does not have HD. He has not been tested, but it's clear that in his late 40's, he does not have the gene.

The one thing I have observed relative to my wife's family back in Richmond, VA is that HD is indeed a family disease and it started early for her as her parents divorced while the three children were in high school. My wife took care of her mother all by herself while holding a job and going to night school, later graduating from college. Pretty remarkable stuff she has accomplished with no support from her family.

My father-in-law who died from diabetes two years ago was an interesting and talented man and a Civil War buff from Virginia. He was a tortured soul who left his HD afflicted wife early on, ran off with the young lady who actually was the kids' babysitter many years prior, and had enormous guilt in not being a good father to the three children. I welcomed him to our wedding and talked my wife into letting him walk her down the aisle. It started a rekindling of sorts for them, but he seldom ever visited. Always sents money for Christmas, but didn't know how to really carry an in-depth relationship with his children. He was not dependable and had no accountability. I never want to be that guy.

My wife is what I would call entering stage 4 (out of 5) as she no longer makes her meals and I am having to serve her food, cut in small pieces, and help her eat when it comes to pasta. Lots of smoothies for lunch (with a straw).

We do have one son who is 14 years old, entering high school, is obviously at risk. I have my own family with several siblings who are very supportive and help out. I am currently pursuing in-home assistance which will involve meals and toileting assistance.
Re: Mini-profiles & blogs cool smiley
July 26, 2014 01:41PM
I am 28 and a mom of 4, I tested positive about a year ago, but I was not surprised by this. My mother passed away at 48 of HD and my grandmother died of early onset HD in her 30's. My CAG is 47, so I am not expecting to be very lucky either. I have 3 boys and 1 girl, and I am terrified for them. Right now I am just enjoying my life as a mom and doing my favorite things while I can. I love hiking, spurlunking, climbing, repelling, and photography. I do not have any symptoms yet, just a general sense of discomfort in my body. It feels like I need to stretch at all times, like that feeling your body gets when you yawn, but it never goes away. They just gave me some medicine to help with the annoyingness of the feeling, but last scan looked good. I go in for another in a little over 2 months. I wish I could tell when something was changing but I flunked the first tests with the neuro, the memory and cognition tests, but only because I have always been flaky and have the focus and memory of a gnat, so how do you know if horrible concentration and memory become worse. I mean seriously I have been on mood swing meds and anxiety meds since I was 15, so I am always worried when I have a day that is worse than others that something is going on. Well, guess I will stop ranting now lol. Nice meeting everyone and hope you guys are having a good day!
Re: Mini-profiles & blogs cool smiley
October 13, 2014 10:12PM
My name is Valerie Rife....I'm 45 years old...I was tested in 1997 negative.. my sister Vicky was two years older then me and passed away when she was 45 was positive with HD...My sister Debbie passed away a week ago was 46 years old also positive with mother passed away at the age of 58 also positive with HD...survivor's guilt is something I'm dealing with now...I live in Washington can find me in facebook
Re: Mini-profiles & blogs cool smiley
March 09, 2015 04:33PM
Hi my name is Trisha. I am 34 with 6 children and have the hd gene. I have the onset of symptomatic hd. My children are also at risk.
Re: Mini-profiles & blogs cool smiley
March 17, 2015 08:44PM
> Hi my oldest daughter has HD & was tested in January 2011 she was 34 with a cag of 47, Today 2015 she is on 12 differant meds for all her problems. I wish she would get on here but she won't. She appears to sleep most of the time but when I say I'm going to town she's awake and ready to go most of the time in her PJ's, she usually never get's out of the car. If her kids birthday is coming up, Christmas, or she needs a coat she will get dressed & go shopping. Also she will go to any of her kids event they are in ie. school concerts, church plays, basketball games. She falls alot and if i try to catch her I fall too and get hurt so I now have to let her fall on her own. One time I hurt my knee real bad that took months to heal, I also broke my new glasses. My daughter is now very heavy, she use to be thin but most of her meds make her gain. She has told me she is sad about her life, mostly about losing her 3 kids her oldest when she was 8 years old to her ex., the other 2 live with her Aunt 4 years ago, now age 17, 11, & 9, and haveing to live with me her mom. Her 2nd husband left, probably because of her out of control behavior that went, on one could understand not even herself, she used to tell her husband "take me to the hospital and drop me off something is terribly wrong"! But most days she will tell you she is good when asked. She almost never talks. I talk to her all day, once in a while she answers. Her Grandpa had it but we didn't know it he killed himself in 1985, then her Dad was tested in 2007 & that was the first time we all found out about Huntington's disease before that we had never heard of it. He is still doing pretty good, not on any med's and walk's everyday. My middle daughter was tested negative, and my son won't test. I worry for my grandkids. The oldest 17 has just voiced her concern about herself haveing it someday. I just pray they don't have the HD gene. I hate it and don't understand but I choose to trust in God and so does my daughter. God is able. She has people come in to help her and me with her shower, exericises, she gets medicaid after a 2 year wait. we thought she could get on medicare too after 2 years but she can't as she never put in enough money to get it.
Re: Mini-profiles & blogs cool smiley
June 06, 2015 01:28PM
My son is 31 with a CAG of 52. His father passed away with HD at the age of 48. Alex was going on 16 at the time and all he wanted was to know whether he'd inherited the gene or not. He was tested at 17 after first having been refused due to his age, but the geneticist put together a panel of doctors (pediatric neurologist, psychologist, pediatrician) and my son's therapist who had helped him through learning that his father had HD, then his dad's illness and passing. They all agreed that Alex was smart and strong enough to handle the test results. The test was taken and when we got the results, the geneticist said, "Alex, you can change your mind if you've decided you don't want to know." Alex told her he already knew. She looked at him, my sister, his therapist and me and asked how could he already know. He said, "There's a box of Kleenex at the table for everyone here." There's more to say, but I just can't at this time. Thank you all for being here on this message board. I so appreciate your help every day.
Re: Mini-profiles & blogs cool smiley
March 13, 2016 03:59PM
I am 47, and my husband 51 is showing early signs and he is in process of being tested. He is showing early signs of chorea. I teach yoga, do some freelance writing and we have two children, ages 12 and 14.
Re: Mini-profiles & blogs cool smiley
April 19, 2016 06:50PM
This is for my wife of 43 years who was told she had huntingtons 15 years ago. She has spent the last 3 years in an
assisted living home. The staff have been good, but they have limited resourses to help them. She now has almost no
verbal ability and can not walk at this time. She still eats softer and small portions and drinks with a straw, but they are days when she will not eat
for several meals. People have brought up feeding tubes but I just do not know. Any feed back ?
Re: Mini-profiles & blogs cool smiley
April 21, 2016 08:16PM
Facing a feeding tube decision any experiences would be helpful as the internet is full of good and bad outcomes.
this would be for my wife.
Re: Mini-profiles & blogs cool smiley
October 21, 2016 09:46AM
Hi my wife has HD. She is 54 and was diagnosed with the disease about 10 years ago. Her two sisters also are fighting it. Her mother, grandmother and 3 aunties all died from the disease. We have 3 adult children all who have tested negative thankfully. She struggles with balance, speech and recently started losing her vision. This has baffled her eye surgeon as her eyes seem to be functioning correctly. Apparently it has to do with her ability to process what she sees. MRI scans have indicated quite a degeneration of brain cells which we are now having a neurosurgeon look over. My question is has anyone heard of this happening to HD patients as I seem unable to find anything related to this. Thank you.
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