We went back to the Dr. on May 4th. Donnie went thru a 2 hr. evaluation with another specialist. He said that Donnie still remembered what to do but could not get his body to do the task. He said that Donnie really needed to get up and move around and exercise because his body was getting extremely stiff. We saw Dr. Claussen afterwards and he suggested that we decrease Donnie's Risperdal frby eteeftaller - Huntington's Disease Support Center
Wow. this forum has been so quiet lately. I hope that means that everyone is having some type of peace in their lives. I was just reading back over my post from this time last year. Donnie has changed so much from then. He is MUCH more calm now ( I'm sure its either the medicine he is on, or the detoration of his brain.) Either way he is much easier to live with. We are still waiting to hearby eteeftaller - Huntington's Disease Support Center
I just recently signed my husband up for his long-term disability. HD is now classified as a sympathy disease. Here is the link re: social security disability and Huntington's - once you file, it should fast track. we are filing in Tennessee. I don't know if all the states are the same. Good Luck Lizby eteeftaller - Huntington's Disease Support Center
Thanks Mikee. It was nice while it lasted. This weekend Donnie was very agitated and nervous and parinoid. He also shook a lot. He said it was because he was cold but refused to put a coat on. Last week he went to N'vill (2hrs. each way) with Dalynn, yesterday he wouldn't go 12 miles with him to the next town to get a boat. He seems to only be motivated when I am with him. I can get himby eteeftaller - Huntington's Disease Support Center
This week has been sooo different from last week. It's just amazing. Last week Donnie wouldn't do anything and cried all week, this week, starting with Sunday he has been in such a different way.....Sunday after church, he rode to N'ville with our son Dalynn, to get a bedroom suite. He even helped Dalynn load and unload it. Mon. and Tues. he has been "with us" those of you who dealby eteeftaller - Huntington's Disease Support Center
Mikee, what you said in your first sentence is sooo true. I will only try to give Donnie one thing per day to do around the house. If I try to ask for more than that, he seems to get very over-whellemed and just completely shuts down. If I ever say anything about how much of a mess Mollie (his dog) is making he will just start crying so I've just stopped. EXa. today, his job was to sweep tby eteeftaller - Huntington's Disease Support Center
thank you Mikee, I ask him and he said "no. he did not want to do that." He has had a very bad week. He has been crying almost every day when I come home for lunch. when I ask him what's wrong, he says he don't know. My heart breaks for him so bad. Lizby eteeftaller - Huntington's Disease Support Center
Howard, Wow. I am so sorry. Your wife was so young. Your daughters CAG count is the highest I have ever heard of. Bless you, Lizby eteeftaller - Huntington's Disease Support Center
Chicago_t, I wouldn't say that I have experienced Donnie just all-out lying, but I can ask him to do something or ask him if he did something I told him to do (ex. give his little dog Mollie a bath) I ask him for a week to give her a bath, and everyday he would say he forgot..... I knew he didn't forget, he just didn't want to do it. So I deal with stuff like that a lot. Lizby eteeftaller - Huntington's Disease Support Center
thank you Howard. Yes your daughter has lived a long life considering the HD. I am so thankful for that. What about your wife? That seems like a young age as Donnie is now 44 and has only been diagnosed 2 yrs. What age was your wife diagnosed? what was her CAG count? Lizby eteeftaller - Huntington's Disease Support Center
The Dr wrote out an order for Donnie to go to physical therapy for his balance. Has anyone else did this? Did it help? Donnie says he does not want to go. What should I do? Lizby eteeftaller - Huntington's Disease Support Center
In my previous post back in December I shared how Donnie's grandmother passed away from cancer and how hard it was on him and how he went to her house every night for 2 months. She passed on Dec. 26 and he did really well at her funeral. Well...Donnie's mother had surgery and was diagnosed with Overian cancer Monday. We were at the hospital with her and he had a difficult day all day. Pleaseby eteeftaller - Huntington's Disease Support Center
Barb....why did you delete your post??? I always really enjoy hearing anything you have to say or your advice. can you send it to me in a PM? Lizby eteeftaller - Huntington's Disease Support Center
Ty, Again I am so sorry about the passing of your dad. I know it will be very hard for your mom. I lay in bed last night (Donnie had already been asleep for about 3 hrs) and I just lay there trying to think of the time when we were "normal" and it seemed like forever ago. I was trying to remember that it had only been 7 years ago that Donnie and our son, Dalynn built our houseby eteeftaller - Huntington's Disease Support Center
TylerFitz, I am soo sorry about the loss of your father and what your family has went thru and are going thru. I am trying to enjoy just the little things that make Donnie smile now, which are very few. Its like he is just in another world most of the time. As I snuggle up to him in bed at night, I try to think that even tho things aren't the same, at least I can just cuddle up next to himby eteeftaller - Huntington's Disease Support Center
Yes CP they definatly are. It is so hard to watch him get worse every day. Today is not a good day for him. I went home at lunch and he just started crying. I said "honey what's wrong" and he wouldn't sat anything for along time then he said " I just feel so useless. I can't do anything. I should help you and I just can't" I said "Donnie it's ok. you are fine. Iby eteeftaller - Huntington's Disease Support Center
Kristine, here is a list of Donnie's medacines: Morning: Lexipro, Risperidone, Gabapentine (also known as Neurontin) (that is for his headaches. it has really helped), Donepezil (this one is new that they gave him at his last appt. it is suppose to help with his memory) Night: Risperidone, Gabapentine, Colnazepam Lizby eteeftaller - Huntington's Disease Support Center
tough morning this morning.....We got a lot of ice where I live and driving was very dangerous this morning going to work. as I sat at home this morning before I left for work I thought.....this is the first time in 24 years that Donnie has not carried me to work when the roads were bad.....and I just broke down and had me a crying spell.......it's the little things that I am missing so much.by eteeftaller - Huntington's Disease Support Center
Mike, I sent you a PM If anyone lives close to Nashville, TN or can get there, I feel like We have found THE BEST CLINIC EVER!!! It is called HUNTINGTON'S DISEASE AND CHOREA CLINIC. IT IS A BRANCH OF VANDERBILT CLINICAL NEUROSCIENCES. feel free to google it. Donnie's Dr's name is Dr. Daniel Claassen. There number is 615-936-1007. The whole staff there is soooo helpful. They have a wholby eteeftaller - Huntington's Disease Support Center
Kristine, Yes I got it and I accepted it. You have a beautiful family. I hope you had a good weekend. Lizby eteeftaller - Huntington's Disease Support Center
I am on my computer at work and I don't usually get on this site on the weekends and I'm off Mon. and Tues of next week. Friend me on FB and we can private message.by eteeftaller - Huntington's Disease Support Center
yes. Elizabeth Teeftaller Waynesboro, Tn and I will get you a list of his medicine Lizby eteeftaller - Huntington's Disease Support Center
Kristine, I am also excited for your appt. I hope they help you and your husband. there is so many areas that are effected. I am sooo happy about your children. Twins? wow!! We started fostering children before Donnie was diagnosed. right after Dalynn left for college. We had MAJOR empty nest, lol. We have 2 foster sons right now that I am planning to adopt. (not Donnie because he isby eteeftaller - Huntington's Disease Support Center
Kristine this is concerning your other post I have not heard of that clinic but we were in the same boat. When Donnie was first diagnosed we were seeing a dr in Lawrenceburg, Tn. He was a neurologist but he had never had an HD patient. His famous words for me were always " unfortunately that is just part of it" I got soooo sick of hearing those words for a year. We now go toby eteeftaller - Huntington's Disease Support Center
Kristine I have not heard of that clinic but we were in the same boat. When Donnie was first diagnosed we were seeing a dr in Lawrenceburg, Tn. He was a neurologist but he had never had an HD patient. His famous words for me were always " unfortunately that is just part of it" I got soooo sick of hearing those words for a year. We now go to an HD specialist clinic in Nashville,by eteeftaller - Huntington's Disease Support Center
Kristine, We live in Waynesboro, Tennessee. just north of Florence, Alabama. I am 42 and Donnie is 44. How many children do you have? how old? We have one son who is 22 and has tested negative for HD. Praise the Lord. I have a pretty long blog on here called "my story" if you ever have time you can read it. It will give you some insight of how the last 2 years have been forby eteeftaller - Huntington's Disease Support Center
eteeftaller [ PM ] Re: HD and constipation February 11, 2015 11:58AM Registered: 1 year ago Posts: 87 well....such an odd subject lol but one that is definatly an issue. for the past 2 weeks Donnie has been having a lot of trouble going to the bathroom. before this, he was like clock-work every morning after breakfast. I didn't know if this was an issue due to HD or not because 2by eteeftaller - Huntington's Disease Support Center
Kristen, I totally understand and yes it seems like our lives are so much alike. How old is your husband? I am still trying to work but it seems like it is starting to get harder everyday for him to be without me. He will call several times a day and I have to come home for lunch at 12:00. not 12:05 because it makes him a nervous wreck and he is calling me. My sister ask me to go to Nvilleby eteeftaller - Huntington's Disease Support Center
Kristen, How long has your husband been diagnosed? My husband was diagnosed 3 yrs in aug. of this year. But he has been symptomatic for about 5 yrs. His CAG count was 45. He also suffers the most, mentally . His balance and coordination is also very off. Does your husband freeze all the time. The last few months Donnie just can't get warm and before, he was always a very hot naturedby eteeftaller - Huntington's Disease Support Center
well....such an odd subject lol but one that is definatly an issue. for the past 2 weeks Donnie has been having a lot of trouble going to the bathroom. before this, he was like clock-work every morning after breakfast. I didn't know if this was an issue due to HD or not because 2 weeks ago Donnie stopped dipping tobacco and he thinks that is the reason he is having trouble. What do you'll thiby eteeftaller - Huntington's Disease Support Center