Hi Everyone,
I am very new to this forum, but am looking to see if anyone has been down the road that my sister is currently traveling. I have a 47 year old sister who has tested positive from HD. My dad was diagnosed when he was 40 and died at 51 but really from complications from cancer although he was near final stages. My dad was very passive, and seemed to mostly have the physical movements. He had all his faculties about him.
My sister on the other had, had severe mental issues. She was abused and neglected as a small child till my father got custody of her at age 8. She always had some issues, but nothing ever documented. We share the same dad different moms. When I was 10 and she was 21 she was out of the house because of her behavior. She would lie quite a bit. We just thought oh thats her and knew there was something off. She went off getting married and we never knew.
Over the next 10-15 years after her failed marriage she chose poor relationships. People that abused her, took advantage of her and used her and she could never see it. But she still supported her self and was able to hold a job. Over the past 4 years she has had a severe decline in every aspect. she can't hold a job, can't hold a relationship, living homeless and not seeing an issue with it. In her mind, friends are more important than family. Her recent place she was staying was living with either 5 or 6 guys, another woman and a 5 year old boy all not related. I suspect they were pimping her out, and her not knowing what was going on.
It was completely amazing to me how so many health professionals are unaware of the systems and effects of HD. I will admit, I had no idea as well since my father was pretty "normal".

My reason for posting this is to try and help anyone out there that may be going through something similar. I really had no quidance. But I was able to get my sister to doctors, get her diagnosed, get guardianship and pull her out of a bad situation (even though she hates me and wants to go back). But it was soooo hard to do the process.
So currently, my sister is in a state hospital that has a specialty unit for HD. It's only been a week, and it's been super hard. She has a kids mentality which makes it much harder because you cant reason with her.

Anyone been through anything similar? Any advice?
Sincerely,
Christine

Sounds like you did the right thing. This behavior is quite common and I imagine the homeless shelters and streets are filled with people like your sister. They get written off by their families, society has no clue how to deal with them and Drs don' t know how treat them! They get caught up with the only crowd who "accepts" them, which can also be people who don't understand that this is a disease, or take advantage of them because they know they really don't have anyone looking out for them. Sorry you had to intervine and be the bad guy, but you did what many people would just rather not. I applaud you for making some hard decisions that are really in her best interest.
Vicky

Hi Christine, first I'm sorry what your family has been going through, and I'm so glad you have been able to step in for your sister. I can tell you why a lot of family doctors don't know very much about hd. I'm in the early stages of hd, diagnosed 10 years ago now. So my family doctor was about 40 at that time. When she received the letter telling her my cag count, she had no idea what it meant, and she quite happily let me explain it to her. What we have to realize is this, the genetic test for hd has only been here for less than 20 years, and it is since then that research has been learning more and more about hd. So my doctor explained to me, that when she was in medical school, the genetic test hadn't been discovered yet, and in medical school they spent less than 5 mins learning about hd, because not much was known about it at the time. So we have a ton of doctors out there, that know very little about it. She said I am her first hd patient, and she was very glad when I had the social worker send her a copy of the physicians guide to Huntington's disease. Since then, she has taken what she has now read about hd, and taken her experiences with Alzheimer patients and patients with depression, and combined her knowledge with experiences from these other diseases, and she has become a fantastic doctor for my hd. But what you are saying is also very true and frustrating, either many doctors don't know enough, or nursing home and home care resources are an ongoing paperwork battle, I know because my mom is having to fight with the system for my dads care, and it doesn't stop, one thing after another, but she also has a lot of people helping her too. My dad is 82 years old, and has done very good with his hd, until a few months ago, and when a nursing home didn't work out, he is now in a secure lock down ward in the hospital, for his own safety and the safety of others. But, he thinks he is at a party, because there are so many people to talk to

Going through the exact same thing with my wife,kid mentality on top of being easily influenced by others and a heightened self esteem along with lies and anger outbursts.Hang in there and glad you got her help she needs.

Sorry you are going through this. Sounds like common behavior with this disease. I feel sure that the streets and homeless shelters are filled with people in your sister's situation. Families don't know how to deal with the behavior, friends don't understand it, and drs don't know how to treat it. Then they get into the wrong crowd as that seems to be the place they are "accepted" and maybe even "normal". Sounds like you have done the right thing even though you have to be the bad guy. Glad you stepped in and made the hard choices on her behalf when others would just rather not. She has most surely had a hard life filled with disappointing family with her choices and being neglected, used and abused by those around her who she depended on in one way or another.
She is very fortunate to have you to advocate for her, she may never even realize how much you have done to get her into the right place to get medications and hopefully some care for her symptoms, both mental and physical.
My husband's cousin (HD +) is in Mexico and most of her family has gotten so fed up with her that they have basically just written her off. She is in such poor health that she is having a really hard time even trying to get on a plane to get back to the states. She gets a military disability and doesn't qualify for medicaid as long as she gets that, She is in her 40s and has struggled most of her adult life in one way or another. We don't even know how to go about helping her. We got her a ticket to come to visit for Thanksgiving, but she had some problems at the airport and wasn't able to board the plane with her meds.
She is getting very hard to understand on the phone and we don't really know her living conditions.
Your sister is lucky to have you being organized enough to go through what it took to arrange for her to get into a safer place.
Hope you are able to visit her and check on her often, even if she is less than cordial!
Vicky

Vicky

Thank you guys. I am the bad guy. My sister hates me right now, and usually i'm ok with that because I know shes at a place right now where shes being treated great. Funny, my sisters name is Vicky as well. It seems as if we are all in the same situation. I find it almost impossible to deal with the child like symptoms, you can't reason at all when she focuses on one thing. I can tell you, that finding a facility that deals only with HD is the best place to be. Its a sad environment, but they deal with this on a day to day basis where us as individuals can't.
I am trying to stay positive, but am afraid my sister is "not sick enough" for where she is right now. I know if she gets out of where she is, she will be right back with the wrong crowd making poor decisions. I only hope the court sees how sick she is.
Christine

If you ever need to talk Chicago-T, please please e-mail me anytime. We can use each other to vent. I live outside of Boston, not sure where you're from. If anyone wants to e-mail me, please do not hesitate.
Christine
chriss6007@comcast.net

Until our medical system realizes that HD is a very complex disease we family members will always be fearful that our loved ones will not be judged 'sick enough' to qualify for placement. If the facility where she resides is specific for HD placement they do understand. Knowing her behavior can change in an instant, they are prepared to deal with her and eventually she will settle in and be content in a place which has a very consistant schedule.