I'm so very sorry for your loss! Thoughts and prayers to you and your family.by mjdelcon - Huntington's Disease Support Center
Is your husband on an antidepressant? For Ray, he never said he was depressed (and I didn't really think he was; just quiet) . . . when he went in the nursing home, though, they started him on an antidepressant and his mood greatly improved! He wanted to participate more in things again and even though communication was difficult, he tried a lot more . . . just a thought.by mjdelcon - Huntington's Disease Support Center
Terrilynn, I've also struggled with this over the years, throughout Ray's progression with HD and the suffering he endured. I still go back and forth a little, but do believe that through all these trials and tribulations with HD, it made Ray and I so much closer and made me love him even more and I have become a much better person with a lot more understanding . . . I almost feel like God giveby mjdelcon - Huntington's Disease Support Center
My Raymond had slight finger twitches, and he would make grunting-type noises when relaxing. I would be in the kitchen, and Ray would be in the living room watching TV, and I could hear him making these noises . . . that is absolutely when I knew. Looking back now, he definitely had some subtle symptoms for years before that (like impulsiveness, low motivation), but I didn't put two and two togby mjdelcon - Huntington's Disease Support Center
Welcome, Milestone!! Definitely try to stay positive and keep hope that research has made tremendous strides in recent years!! The future is bright!! I know that's easier said than done at times, but I wish you all the best!by mjdelcon - Huntington's Disease Support Center
Oh, Carla, I'm so very sorry for what you and Tim are going through! Don't give up, though! It also amazes me how little many people in the nursing home listen to the families, when they usually know their loved one best! In any event, would it be possible for Tim to have private room? I know Ray absolutely needed a private room and thankfully was lucky to have one. He would have been out oby mjdelcon - Huntington's Disease Support Center
Prayers to all of you!by mjdelcon - Huntington's Disease Support Center
Steve, I thank you also for sharing your story!!by mjdelcon - Huntington's Disease Support Center
I'm so sorry you're down too! It can definitely be difficult trying to get help for your loved one in-home. I hope you find some relief and help eventually!by mjdelcon - Huntington's Disease Support Center
Ray also had numerous rashes . . . on the face, especially . . . I know on the face it was seborrihec dermatitis and it's actually common in people with neurological disorders, something to do with the oil production (similar to cradle cap and dandriff) . . . he also had eczema on hands, arms and legs . . . we were constantly putting creams all over his body.by mjdelcon - Huntington's Disease Support Center
Welcome! Your experiences sound all too familiar! I'm sorry that you, your husband and family are having to go through this. There are no easy answers, just a lot of patience. It's definitely not easy, and I remember how challenging it was when Ray was home with smoking. I was always afraid he was going to burn the house down. Try to seek help from family members, friends, etc., because youby mjdelcon - Huntington's Disease Support Center
Oh, Bob, I'm so sorry about your daughter!! That sounds so very sad and heartwrenching for a parent. I guess we never really know what we're going to face in life . . . it's definitely never easy, though . . . thinking of you.by mjdelcon - Huntington's Disease Support Center
Like Fred said, unfortunately, those could be early symptoms. I know Ray's initial symptoms starting with strange noises, I could hear him from the other room, but he wasn't aware of it at the time (at least he said he wasn't). Without having a neurological exam and/or genetic test, you won't really know for sure, though. It could also be stress if your husband is also worrying about it or somby mjdelcon - Huntington's Disease Support Center
Ray smoked right up until he passed away. In the nursing home, he couldn't smoke, but my mom and I would take him outside a couple times a day and each time he'd have a couple smokes. He loved it! The last couple years, we even held the cigarettes for him, and I actually think it was some real bonding time (lol) . . . it didn't matter if it was ten below zero, we were out there with blankets,by mjdelcon - Huntington's Disease Support Center
Again, I'm so sorry you're going through all this! It's so difficult. I wish I had some advice for you. I remember feeling at a loss for a long time, feeling like there was nowhere to turn for help. I tried multiple agencies for assisted living, looked into nursing home placement earlier and even tried to have Ray in his own apartment for awhile (but I was there all the time) and there didn'by mjdelcon - Huntington's Disease Support Center
That's so great!!! I'm so happy for you, too!!! Wonderful, wonderful, wonderful!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!by mjdelcon - Huntington's Disease Support Center
Thoughts and prayers to you!!!by mjdelcon - Huntington's Disease Support Center
Rainbow, I hope you're feeling better. I've been thinking about you, and I'm so sorry for what you're going through. We're here for you if you need to vent; sometimes, it just helps to get it off your chest. Thinking of you, Michelleby mjdelcon - Huntington's Disease Support Center
Aloneandscared, I know that this journey is hard, but you can get through it. Try hard to stay happy and make the best of these sad circumstances. You can still be there for your boyfriend, even if he's not living with you. My son's dad lived in a nursing home for the three years before he passed away, and by far, we became the closest over those three years. I was able to go see him and enjby mjdelcon - Huntington's Disease Support Center
Danne, I agree about getting the medications checked to see if something else could help him better with his outbursts, etc. With regard to nursing care, where we live, a nurse from public health had to come to our house to do an assessment on whether or not NH care was appropriate. It was more physical-type needs, dressing, bathing, toileting, eating, etc., daily living activities that theyby mjdelcon - Huntington's Disease Support Center
I'm so very sorry for the loss of your brother and father, as well.by mjdelcon - Huntington's Disease Support Center
That's absolutely wonderful news!! So happy for you all!! Thank God!!by mjdelcon - Huntington's Disease Support Center
That's awesome!!by mjdelcon - Huntington's Disease Support Center
Hi, Caitlin, I'm sorry for you what your friend and you are going through. I really don't know why your friend would be progressing so fast, only to say that each person is different with HD. My son's dad started developing symptoms in late 20s and passed away when he was 46, with a CAG count of 53. You've come to the right place for help and information, so welcome to the forum! Micheby mjdelcon - Huntington's Disease Support Center
Ray had issues with OCD throughout his disease progression and later, suffered from other psych issues, too. At one point, though, he did have a psychotic episode, paranoid, hallucinations and all, very bad, and it was most definitely from medication . . . he was taking amantadine to counteract some of the parkinson's-type movements from Abilify. He had actually been fine on the combination foby mjdelcon - Huntington's Disease Support Center
Welcome! You'll definitely find a lot of information and support here!by mjdelcon - Huntington's Disease Support Center
Millie, So sorry for what you guys are going through. I hope Terry is on the mend quick! You guys have so much to deal with already. Thoughts and prayers for you both! Michelleby mjdelcon - Huntington's Disease Support Center
Matt, Joe said that he saw you on Skype at the convention!! Thank you so much for all that you do, too!! Michelleby mjdelcon - Huntington's Disease Support Center