My husband has HD and there is nothing easy about my caregiving role. He lives in a personal care home now and I will admit I still struggle. I am constantly grieving losses. Both his and mine. I don't think you are weak. It sounds like you are human and a loving and caring wife. I too cry at his appointments. In fact the social worker at his care home ensures that there is a box of kleenex in front of me every time we meet. You're not alone in these feelings. Be proud that you are accepting the doctors help because anything that makes this even a little bit easier or makes us a little bit stronger is a good thing.

If you ever want to chat I can listen.

Take care of you.

Lisa

Dear Eve and Lisa,
Thank you so much for taking time to respond to my post. I did accept a prescription from the dr. (very reluctantly) called CELEXA 20 mg. I have been taking it for 7 days now and I have to say I can tell a difference. It has helped me not to sit and cry and worry all the time about everything. It has also helped me have more patience with Donnie so I guess it has ended up being a good thing. I still HATE that I'm having to take a pill to help me with this.
Donnie on the other hand has seemed worse the past couple of weeks. He is sooo clingy to me. I can't hardly get out of his sight. When I'm home, he follows me EVERYWHERE. He also won't go anywhere by himself. I ask him to go different places for me and pick up things or have the oil changed in my car.
He also seems very nervous and crowds make him anxious.

Liz

It's been almost a month since I've posted. I hope everyone had a Merry Christmas and a Happy New Year.
Nothing much has changed. I post on here also as a "journal type" tool for me to keep up with different episodes with Donnie cause I can always go back and read it and print it off if I want to.

We had a pretty calm holiday and that is good. Donnie is still sooo clingy. He drives me crazy cause he follows me around the house constantly!!! I finally have to tell him " Donnie please go sit down. you are getting on my nerves."
He didn't have a very good day yesterday. He seemed agitated more than normal.
Example: I didn't iron his shirt for church (cause it didn't need it) but I ironed my 17 yr olds shirt (whom had gotten it for Christmas and had been in a box) and Donnie said " you'll iron his shirt but won't iron mine. I see how you feel about me." I said "Donnie, your shirt didn't need it." He then said " you just want to make him look good and not me" I was like OMGoodness!!! I just ignored him.
he then got on to my 12 yr old for not putting the footrest on the recliner back down.
Oh well. just one of those days. It was actually mild compared to some so I guess that's good.

Liz

Question:

The last couple of weeks I have noticed that Donnie is not talking much at all. And what I mean by that is we (our family) can be carrying on a conversation at the dinner table or in the car and Donnie just sits there. We can all be in the living room watching a movie or talking about whats on TV and he just sits there. sometimes he sits in the recliner for hours and never says a word. or we can go to my parents and everyone is talking and unless someone just specifically says something to Donnie, he will just sit there. He's not mad or anything, its just like he's in another world.
I would consider that it might have something to do with the medicine he's on, but that has not changed for about 3 months now.
I have read where eventually an HD person will start to loose the ability to walk, talk, and do things for themselves.
Does this sound familiar to anyone???

Liz

eteeftaller Wrote:
-------------------------------------------------------
> Question:.
> I have read where eventually an HD person will
> start to loose the ability to walk, talk, and do
> things for themselves.
> Does this sound familiar to anyone???

Yes.

Ive also heard that it is so hard to keep up with a conversation. So like when we are talking at our normal pace and cadence they cant really focus. Try slowing the conversation down and try to include him by asking him questions and WAIT on the answer. They can be slow to react as well, as sometimes it can be difficult to put their words together with their thoughts. See if it makes any difference in his participation in the conversation.

Thank You Vicky,

that is exactly what he does. It's like he can't keep up with what we are saying. also something can happen on Tv and he is watching it and I might be busy and ask "what did they just say" and he doesn't have a clue.
I saw a post on here one time that someone's husband loved to watch cartoons cause he could understand them better.
I do slow my conversations with Donnie WAY down. and I try to have a lot of patience with him with his response. sometimes it takes him 30 seconds or more just to answer me and I can see it on his face that he is trying so hard to focus but I can also see such a lost look.
and even tho Donnie has never had the bad movements that go along with a lot of HD patients, lately he seems like his walking has slowed down soooo much. he is like watching someone in slow motion try to walk, talk, and eat.

there seems no way to ask this question for it to sound like it makes sense but does that seem like to you'all that he is progressing a lot faster?
Thank you sooo much for responding to me.
You'all and this site, is all the help I have.

BTW: I don't think I have ever said on here but his CAG count was 45 when he was diagnosed in Aug. of 2013


Liz



Edited 1 time(s). Last edit at 01/15/2015 12:58PM by eteeftaller.

Could be progression, but could also just be meds... You are bound to notice every minute changes, as not only are you with him and know him presymptomatc but you have learned so much and know what you're looking for. Initially when we were having issues prior to diagnosis, Dave was put on Zoloft by out primary MD. It effected him in a way that made it look like he was almost getting to end stage. Choking, falling, aggression..., after diagnosed they changed that med, and that all turned around. I would be more inclined to talk to his Dr about this change in his behavior and the meds he's on.

Thank you Vicky. We have an appt. Feb. 2nd. and I will definatly talk to the dr. about this. Donnie is not on Zoloft. he is on Lexipro, among several other medacines.

On a positive note lol (anyone who reads my blogs knows this is few and far between) but Donnie was approved for his short-term disability thru work last Wednesday!!!!

Also, anyone who has read my post knows I was concerned when my son Dalynn was tested and tested negative because knowing him as I do, I was afraid he was just telling me this so I wouldn't worry. Well I had a good long talk with his fience the other night and she said that her and Dalynn was very anxious to have a baby after they were married. I shared with her my concerns about dalynn being HD positive and she said she felt like he was telling the truth about testing negative because before he was tested and they would talk about having children he told her he would have to wait to see if he was positive, now that he tested negative, that's all he talks about is having a baby and how he cant wait and wants to have one so that Donnie will be able to enjoy he or she before he gets so bad. So that gave me more peace in thinking that maybe he really did test negative.

It is great to hear about the confermation of Daylynn's test. I can imagine how relieved that has help you

That's a bit of good news. You need some.

Conversation's are difficult to follow and adding more and more voices to them makes it almost impossible. You kind of want to withdraw and you feel somewhat out of place. Even peripheral noises can interfere. Some days are better than others. Refresh my memory, does Donnie sleep well at night?

Mike

Mike:
He didn't. It had gotten to the point I had to fix me a mattress on the floor beside our bed. He was sooo out of control at night. But after we started seeing the HD specialist in N'ville, he changed a lot of Donnie's medicine and put him on some different meds. and took him off some that he had been taking, now he sleeps sooo peaceful. he barely moves all night.

Also Dalynn got Donnie a little house dog. She is a Cha-weenie. Her name is Molly and Donnie absolutely loves her already. It gives him so much company during the day when he's there by himself. It also gives him a reason to get up and take her outside and bath her. Half the time tho he can't remember her name. But she has been good for him.

Liz

Well we went to the Dr,. yesterday.. Overall everything went well. Dr. Clauussen and his staff are sooo supportive and interested in Donnie which means so much. (they were also happy in how much better that I was compared to the last visit)
Overall I don't think much had changed in the past 3 mo. They took him off one of the med. he was on and put him on another one to try and help his thinking and memory.
Donnie main problem seems to be his cognative abilities and his balance and coordination.

On a different note.....I kind of got some disturbing in-sight on Dalynn. I explained how he told me he tested negative but he refused any counseling. They explained to me that I needed to find out Dalynn's CAG count because even tho he might have tested in the 30's and he might not ever become symptomatic, it doesent mean that when he has children, if his CAG count is high enough, his children could have a higher CAG count and still test HD positive. I did not know this so now I'm worried again. This is something I am going to talk to him about this weekend.
Does anyone have anymore insight on this?

Liz

A CAG count in the 30's wouldn't be called negative. It would probably be presented as "in the grey area" or inconclusive.

Howard.
Thank you for responding. I am not sure what Dalynn's CAG count was. They were just giving me that as an example.
Liz

Yes if he is in the gray area he could pass a higher CAG to his offspring. It's call Genetic Anticipation. He may be in the clear, but be a carrier. Just one more crappy thing about this crappy disease!

Vicky

My dad and I both have a cag of 39. When I received my results, I was told 39 is not grey, but definitely positive. I was diagnosed as symptomatic at the age of 46, 10 years ago, and my dad did not become symptomatic until the age of 75, and passed away a year ago, and he was 82 years old, so hd is also very unpredictable, even in the same family, with same cag counts

I think I got some great news yesterday!!! Dalynn's CAG count was 17 and 18 so according to this research that I found he, nor his children will ever have HD !!!

Two facts are quite straightforward:

If both copies of a person’s HD gene contain 26 or fewer repeats, they will not develop HD, and nor will any of their children.

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 2 weeks ago Donnie stopped dipping tobacco and he thinks that is the reason he is having trouble.
What do you'll think?
Also I have noticed for a VERY long time that Donnie has trouble peeing when he goes to the bathroom. He might stand there for up to a minute before he can go.
Is that also a issue for HD patients?

Liz
Edit Reply Quote Report




Kristine [ PM ]
Re: HD and constipation
February 11, 2015 12:35PM Registered: 6 years ago
Posts: 16

Liz,

My DH has made excuses, too, for his problems. He even blamed his Zoloft and took himself off. When he still couldn't poop, I convinced him that it wasn't the Zoloft and he just started back on it.

Yes, peeing is an issue, too. He tried every medicine out there and finally found Vesicare helps. The Urologist even did an ultrasound of his bladder. Vesicare is VERY expensive but it helps.
Reply Quote Report




eteeftaller [ PM ]
Re: HD and constipation
February 13, 2015 09:08AM Registered: 1 year ago
Posts: 87

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 natured person.

Liz
Edit Reply Quote Report




Kristine [ PM ]
Re: HD and constipation
February 13, 2015 09:14AM Registered: 6 years ago
Posts: 16

Liz,

It sounds like we are living identical lives. My DH's cag score is 48. He was diagnosed 5 years ago and had recently started progressing quicker. Mostly mental with some balance and coordination issues. I just quit my job to stay home with him. He has panic attacks when left alone.

He is always cold now too. His hands are always freezing. He has been losing weight in the past 6 months. He was always a stout man, broad shoulder, very strong. That's not the case anymore. He is down to 178 lbs. His shoulders are bony now. He is losing muscle mass along with weight. And as I try to fatten him up, I only manage to fatten myself up. Haha!
Reply Quote Report




eteeftaller [ PM ]
Re: HD and constipation
February 13, 2015 10:14AM Registered: 1 year ago
Posts: 87

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 Nville with her at the end of the month on a work trip for 2 days, well when I mentioned it to him he just broke down and started crying and said "I can't make it without you" he cried and cried all day about it even tho I re-assured him that It was okay and I was not going to go. If I go to the grocery store or church or run any errands, he is calling me to see when I am coming home. He won't hardly go anywhere anymore and if he does, he is ready to go back home very soon.
lol....I just had to stop typing and answer my phone. It was Donnie. He said " what are you doing?" I said "working a little. what are you doing" he said " I just called to talk to you" I know someday I will long for him to just be able to call me so I try to be patient with him.
Donnie is opposite on the weight. He has not lost any weight, he has probably gained some because he doesn't do anything. He has been off work since Oct. 28th of last year and the only exercise he gets is taking his little dog outside to the bathroom (which he does atleast 50 times a day).
He has got to where he doesent want to take a bath because he says it makes him too cold. He takes one on Sun. morning before church then it is usually Fri. or Sat. before he takes another one.
It is really helpful talking to you.

Liz

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.

liz