That's great news Liz. That has to be a relief.

Mike

Thanks Mike. It is a huge relief.
Liz

Hi Sharon.

I haven't heard anything from you in a few days. I hope everything is ok.

I am having a rough week as a caregiver. Just in a low place feeling so alone and having to do EVERYTHING by myself.
I look at other couples and I see he husband taking the lead role or just taking care of things, and I catch myself wondering what that would be like.
example. A lady I work with was talking about what a beautiful day it was here Sunday and her husband went out and washed all 3 of their cars. I was like, omgoodness I wish I could just get Donnie to clean up after his dog, Mollie, which by the way is driving me crazy right now too. she has chewed up all my couch pillows and so many other things. she will pee on the puppy pad but poops all around it and Donnie just lets it sit there all day and it stinks so bad.
but it hurts his feelings if I say anything about it.
And this week he has absolutely been my shadow. He makes every move I make and it has just got on my nerves this week.
Well I have ranted enough.

write back soon,
Liz

Liz,

Sorry to have been incommunicado the last two or three weeks. I feel so terrible knowing you're having a hard time as caregiver to Donnie and feeling alone.

One thing that may be causing Donnie not to pick up after the puppy is the classic apathy and lack of initiation experienced by Huntington's Disease patients.

My son was engaged to a girl who called him lazy for not working or taking care of their house while she was at her job. She didn't understand that it wasn't him being lazy, but that the initiative part of the brain affected by Huntington's didn't kick in anymore. He would promise to do the housework, but would truly forget and/or just couldn't get started..

When his father was in his early thirties. he was able to remember tasks he wanted to undertake, both at work and around the house. Then he started forgetting more and more--that or just not getting going on it. The last big project he did was putting in an underground sprinkler system. Had I known, despite my having studied up on the disease after he told me about it, I wouldn't have nagged him so much about things... There were other things too, that had I understood, our marriage would have lasted "'Til death did us part".....

Did you, Donnie, and the boys celebrate the Fourth of July at all? Alex was invited, for the first time in quite awhile, to a friend's house for a BBQ and had a great time. My sister drove him over there and a friend gave him a lift home.

Well, it's time to try and get some sleep as work starts early in the morning. Thinking of you, Liz, and hope you feel a bit better about things, ok? I'll check for your reply tomorrow and answer it promptly.

Your friend here in Phoenix,

Sharon

Hi, Liz!

Haven't heard from you in awhile. How are things? Please respond when you can.

Hoping you're doing o.k.

Sharon

p.s. Sent you a private message as well.

Hi Sharon,

Sorry, I have been on vacation from work. I only keep this site up on my work computer so on the weekends or when I'm off thru the week, I don't post.
Things have been so-so.
We went to Daytona Beach, Fl for a few days.
Donnie done pretty good. Being out of his eliment and crowds make him nervous but as long as I was with him, he was fine.
He had a pretty bad anger incident with me last Thurs. but by Friday was fine.
I ask him to clean the bath tub for me while I was at work. I laid everything out for him and when I came home that afternoon he had not touched it. When I ask him why he started crying and said he didn't want to. uuuuuuggggghhhhhh sometimes I get soooo flustrated!!!!
I have looked up the word APATHY, and Donnie's picture is beside it. lol. no, seriously, he has EXTREME apathy. His Dr. prescribed him something for it a couple of times but it didn't help, then he tried reducing one of his other pills to see if it would help and within 4 days he was in a VERY bad mood, so we stopped that.

I hope you and Alex had a good weekend.

TTY soon,
Liz

Liz, hi!

I'm so glad to hear back from you!

Isn't it great to be on vacation from work? That's wonderful that you were able to go to the beach!

I've been reading about how many HD patients are on different meds and some seem to create the problem they're supposed to eradicate.
Alex isn't on any. He hasn't seen the doctor in two years and I can't force him. Finally yesterday he agreed to me making an appointment for him. Got great news this morning because instead of having to get someone to drive us twenty miles or so, his doctor has moved to a nearby hospital! It's the same one where they hold the HD support group meetings, and there's one tonight, but Alex doesn't want to go.

Apathy and lack of initiation ability is one heck of a problem with Huntington's.

Alex is having a terrible time dealing with the fact that his beloved 11 and 1/2 year old dog is very ill. He's in deep denial. I hate to think how he'll be if she dies and it looks like death is imminent.


Thinking of you and your family, Liz.

Hi Sharon,
yes we had a great time but now I am sooo behind at work with paper-work I don't know if I will ever catch up.

That is GREAT news about the dr. being so close. I hope they are able to help him.

Donnie's dad had HD and he was uncontrollable. He moved and jerked all the time, yelled, stayed agitated but his grand-pa on the other hand was just like Donnie, he sat in a chair all day and slept and hardly ever moved or talked. I guess given the choice, I'd rather Donnie be that way. But I worry because he has lost all muscle mass and strength. I told him to hug me how much he loved me the other night and it felt like he barely had any strength.
The dr has ordered PT for Donnie 2 times but he refuses to go.
I am so sorry about Alex's dog. I can also relate to that. Donnie has a little dog named Mollie and he obsesses over her. she sits in his lap all day and sleeps. lol. She also chews up everything and poops in the floor, and sheds soooo bad but if I ever fuss about her he starts crying.
This is such a HARD LIFE FOR EVERYONE INVOLVED!!!!

Liz

Liz, here it is Wednesday night already!

Just a quick line as we have company staying with us. Alex's dog seems to be hanging in there and in better spirits. However, she has lots
of trouble getting up and down. She's on Amoxicillin, a medication which contains milk thistle, ear drops (which she hates!) and a laxative which has her going like Sherman through Atlanta! Not a good medicine for her to take when having trouble standing up, and walking.

Hope work and family life are on an even keel for you this week, Liz. Will write more later in the week.

Your friend in Phoenix,

Sharon

Hi Sharon,
I hope Alex's little dog is still doing better. Donnie's dog, Mollie is still driving me crazy!! I thought surely by now she'd stop chewing on everything and making such a mess but she hasen't.
Things for the most part have been pretty calm around the house. Donnie seemed agitated yesterday afternoon cause I told him we were going to mow his mom's yard and he tried using every excuse possible as to why we couldn't go but I made him and I think that made him mad.

I hope you had a good visit with your company.
I'm not sure if I mentioned it to you or not, but I put in a request to "dream foundation" for Donnie. I got the letter last week that he was denied at this time because he "wasen't close enough to dying" imagine that. I called and explained that maybe he wasent but that he would not be in a condition to make the trip by this time next year. They said I needed more documentation from his dr concerning that. He goes to the dr. Aug. 21 so I will talk to them more about it.
His dream was to go to the grandcanyon, which I'm sure you have done, living in Phoenix.
Maybe if they do ever approve him for the trip, our families could meet.
I hope you and Alex have a peaceful week.

Your friend in Tennessee,
Liz

It's been awhile since I have posted anything....sometimes that is a good thing. Everything with Donnie seems to be on an even level right now. nothing major going on other that having less interest everyday in doing anything.

We went to the Dr. Friday in N'ville. they thought he was doing about the same and left his medicine like it is.
The did start Donnie and I in a study program called Enroll HD. Has anyone ever heard of it or are a part of this?

Liz,

I am in ENROLL at Wake Forest Baptist Hospital in Winston-Salem, NC. It's a worldwide observational study for HD. It was formerly called COHORT in the US and was combined with a similar European study to form ENROLL. I was also in PREDICT-HD for about 5 years. PREDICT is a more intensive study with periodic brain MRIs and spinal taps. I don't think they're enrolling new subjects, but are continuing with existing folks.

All of these studies are VERY important and it's great that you and Donnie have signed up. Congratulations!!

Will

thank you Will for responding. No one ever seems to respond to my post anymore....I don't know if it is just too long or no one is interested but either way, it's ok...it helps me sometimes just to type out what I'm feeling.
This is an annual study. They will evaluate us again in 1 yr. They drew blood from both of us and ask a million questions.
I hope thru this, they are able to help someone.

Liz

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 from yesterday, that is unusual because he will wear all week, what he puts on on Monday. So I went to the hamper and his clothes were in there and I went and looked in the bed, and could tell that he had pee'd on the bed.
I don't know how to handle this because he seems sooo embarrassed about it.
Has anyone else experienced this?

Liz

Hello I am VERY new to this site but I don't feel like I get many responses either. If you like to have lots of interaction you should get on Facebook and join a closed group called "Huntington's Disease Support- The Good, The Bad, and The Ugly". If I post on there I instantly get TONS of comments and responses. There are soo many people on it. It's a great place to get lots of information and stuff. You should check it out! I highly recommend it.

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.

Elizabeth

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.

Liz

Actually because it's a closed group, it will not show up on your FB. Trust me I tested it out because we have not announced my Dad having HD to everyone yet. I had my sister look to see if it showed up on my FB page and it doesn't. The only people that can see it are people who are part of the closed group. So you can post, comment and do whatever on that page and nobody will know except the people in the group. I hope this helps!

thank you.
I will try that.

Hi,
I just read your post from Sept. 8th about your husband's incontinence. I have been dealing with that this summer and fall, too. I tried to get him to wear Depends, which did help when he couldn't get to the bathroom in time, but he really hated that. I explained to him that I needed his help, because I can't constantly be cleaning up or doing laundry and that if he didn't want to wear them, he had to be okay with me reminding him every few hours to go to the bathroom (like you would with a small child). He grudgingly agreed and it has worked (sort of) since then. He doesn't have to wear the Depends, which I think he found really humiliating, and he can still retain some dignity and independence and wear his own clothes and get himself to the bathroom. But by reminding him, he doesn't have accidents as often. I know he doesn't like me asking him if he has gone recently, but it is better than him having constant accidents. I know the day is fast approaching when even this compromise won't be workable, but it is working fairly well for now. You might try it--At first when I asked him to wear Depends, I just introduced it by saying very casually something like, " I have noticed that sometimes you aren't making it to the bathroom quickly enough. Maybe this would help, because I know you don't like getting wet". Hope this helps. Good luck!