I took Donnie back to his neurologist on Friday. Overall I think we had a good visit. Dr. Claussen said he thought Donnie was doing about the same and wanted to continue his medicine the way it is. He said he could tell his cold had him more confused but that was normal. he ordered him physical therapy. he has ordered it 3 times already and Donnie won't go. we will see if he goes this time.by eteeftaller - Huntington's Disease Support Center
Donnie and I have been married 25 years today. All tho the past 3 years have been a nightmare at times, I still wouldn't trade our time together for anything. I was looking back at my post from 2013 and I am so thankful that right now, I am not having to deal with that man anymore. He is MUCH calmer now. I hope it stays that way. I can cope so much better when he is not mean. the past fewby eteeftaller - Huntington's Disease Support Center
You said your husband was bedridden for 8 years before he passed. how long before that, was he diagnosed with HD? If it is any consolation, my son has always had a terrible temper. Lots of sudden outburst of anger, which as you know is a major red flag for HD. After my husband was tested and came back positive, our son wanted to be tested. He tested NEGATIVE with a CAG count of 16 and 17. Sby eteeftaller - Huntington's Disease Support Center
I know what you mean. I really have to watch how I talk to Donnie about the future because I don't know how long he will be with me or what condition he will be. Sometimes I catch myself thinking out someday having grandbabies, or son getting married or just what we will be like when we get old and I have to stop because I don't want to upset him. There is nothing about this life that is easy.by eteeftaller - Huntington's Disease Support Center
I am so sorry to hear this about your daughter. I do not live in the Houston area. I am from Tennessee, but I wanted you to know that I read your post and this is a great site for questions you might have. Lizby eteeftaller - Huntington's Disease Support Center
Maria and Lisa, thank you for taking time to respond. My heart goes out to you both. It is so hard to sit by and watch the man who once was so strong, active and loving turn into somewhat of a child again. I was laying on the couch yesterday after church and I was just watching Donnie and my heart was just breaking. he seems so lost and unsure of what to do next. I have learned to be sby eteeftaller - Huntington's Disease Support Center
hugs to you Yogamom. I also don't know much to say but just that you are not alone. altho I have had many issues with Donnie, denial never was one. He knew and accepted his disease. Maybe because his dad and grandfather both had it. My heart breaks for you. LIzby eteeftaller - Huntington's Disease Support Center
Nice to meet you Maria. Yes we seem to be living very similar lives. I have not had an issue with Donnie driving. Somehow he realized that it was just too dangerous. He hasent drove for about a year now and he seems ok with it. yes, looking back, I don't know how we ever survived the days when he was so mean and having such terrible outburst of anger. I am also still getting to work full-by eteeftaller - Huntington's Disease Support Center
Thank you Concerned partner. Yes this role is very hard and only gets harder. Donnie has been down in his back for 2 weeks now. he has never had an issue with his back before. Could this be part of HD? I took him to a chiropractor today. He did an adjustment and he wants him to come back tomorrow. also, something happened Tues. night that has never happened before. We went to a restby eteeftaller - Huntington's Disease Support Center
need to vent....lol....today was a day that I just wanted to go outside and scream!!!! but I didn't. I just left. I go home everyday for lunch to fix Donnie something to eat. The house was a mess. It really wasen't any different than any other day, but today I looked at him and I said....and I know this is mean, and I feel bad for saying it, but I said " does it not EVER cross your mindby eteeftaller - Huntington's Disease Support Center
Thank you Tyler, you described it perfectly " survival mode" yes that is what we have to do. I know what you mean about the good/bad days. I am currently taking something to "take the edge off" and it is helping. Somedays my heart just breaks into at the thought of loosing Donnie, and some days, when I am watching him suffer, and struggle, I pray that The Lord jby eteeftaller - Huntington's Disease Support Center
thank you so much Eve Lizby eteeftaller - Huntington's Disease Support Center
Thank you Barb and Mike. and I disagree....your input is worth far more than 2 cents. You described it perfectly.....He is in super-slow motion all the time with everything he does. I try not to overload him so he won't get discouraged. Some days are better than others as I am sure everyone on this site knows. Any advice/input that anyone can give me is always appreciated. Lizby eteeftaller - Huntington's Disease Support Center
I had mentioned on here that I not only use this post to get help from other people dealing with HD, I also use it as a journal type. Donnie seems to be declining more and more every day. He can't remember how to do the simplist things anymore. ex. (putting an outlet cover back on an outlet or changing a lightbulb. His moods are still ok. no sudden outburst but he hardly says anything anymby eteeftaller - Huntington's Disease Support Center
Well another year has come.....2016....wow. I was just reading over my post from 2014 and 2015 at this time. I can say that Donnie is in a much better place than we were in 2014 as far as his moods and ager issues go. he is much worse physically and emotionally than he was in 2015. He sleeps sooo much. I was home from work a few days over the Holidays and Donnie would sleep on an off all dayby eteeftaller - Huntington's Disease Support Center
I just wanted to say HAPPY THANKSGIVING to all my extended HD family...... .I know sometimes we feel like we don't have much to be thankful for but we really do... .I was reading over my post from this time last year and I was in such a very low depressed place in my life, but I am thankful that God has helped me make it thru another year....has it been easy? absolutely not, but I know that aby eteeftaller - Huntington's Disease Support Center
so sorry for what you are going thru as I am also a caregiver to my husband. In the beginning he was out of control!!!! Everything was my fault and he accused me of everything imaginable. a lot of which is too horrible to mention. but like JFB said, I guess he finally must have gotten the right drug combination because he is no longer that way. Thank the Good Lord above. I posted a lot aby eteeftaller - Huntington's Disease Support Center
Well we had an AWSOME trip!!!! Donnie had the best time. he did good on the airplane. he said it felt like he was riding a school bus. lol We toured 3 different sides of the grand canyon, went to the hoover dam and did lots of other stuff. Everyone was very sweet to Donnie. I am so thankful that we got to take this trip. He might not always remember it, but we will.by eteeftaller - Huntington's Disease Support Center
Hi Mikee, there is a website called Dream Foundation. It's like a make-a-wish for adults. there office is in California. When you submit an application you are assigned a Dream coordinator and that person help to fulfill your dream and works out all the details. They are a great organization . and Thank you.. I will try to stop worrying but I am SO protective when it comes to Donnie.by eteeftaller - Huntington's Disease Support Center
Well it's official, we will be leaving Nashville, Tn on Thursday, Nov. 5 th, going to the Grand Canyon. I am so excited but also so nervous. We live in a very small town and everyone here knows us and Donnie's condition, It scares me to death to take him out of "our comfort zone" I am so afraid people will mistake his condition for something else and give us a hard time. My 3 sonby eteeftaller - Huntington's Disease Support Center
So sorry to hear about your husband. My husband is also HD + with a CAG count of 45. He does not have the movements. (yet). but, he is on medication that might be helping with this. Donnie has slight movements when he is upset or nervous. His dad moved all the time. Donnie seems to be worse with the cognitive symptoms of HD. I hope this helps in someway. Lizby eteeftaller - Huntington's Disease Support Center
Thank you Sharon. It was so good to hear from you. I've been worried. We are so excited for our trip. I will send you a PM to answer your other questions you ask. I hope we can meet up while we are there. Lizby eteeftaller - Huntington's Disease Support Center
I already had a policy for Donnie long before he got sick so he is still using that but after 2 yrs of being disabled he will be able to get on medicare.by eteeftaller - Huntington's Disease Support Center
I had briefly mentioned in a previous post about applying to the "dream foundation" to get a wish granted for Donnie. at first I was told that he didn't qualify because he was not at the "12 month time frame for traveling" according to their policy. When we went back to the Dr. I explained this to him what they said and he said he would fill out any papers that they would sby eteeftaller - Huntington's Disease Support Center
thank you. I will try that.by eteeftaller - Huntington's Disease Support Center
Today is Donnie's 45th Birthday.....it is a bitter/sweet day......I am happy for another year but soooo sad to see how much worse he has gotten since last year and to wonder what the next year will bring.....but with this disease, we have to just live one day at a time. Lizby eteeftaller - Huntington's Disease Support Center
Thank you Farrisml. I am on that group and I love reading everyone's post and I do comment sometimes but I don't ever make a post because It goes to my news feed for everyone to see and I really don't want to put all that out there for everyone in my very small town to read. Thank you tho. Elizabethby eteeftaller - Huntington's Disease Support Center
My husband is also on Resperdol 2X per day. Even tho he has never had really bad movements, It seems to be helping him. Lizby eteeftaller - Huntington's Disease Support Center
Dear Jacquie, So sorry to hear about your husband. sounds painful. I am a caregiver to my husband also, and we have faced a lot of challenges, the most recent is in "my story" on here, but we haven't experienced tongue biting yet....I hope you find some help. Lizby eteeftaller - Huntington's Disease Support Center
QUESTION: I have noticed over the weekend and today that Donnie is starting to pee on himself. I was home for lunch and he took off to the bathroom. When he came back, he had wet all over himself......I ask him about it and he wouldn't say anything, like he was embarrassed. I don't think his brain is telling him in-time to get to the bathroom. I then noticed that he had changed clothes froby eteeftaller - Huntington's Disease Support Center