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 him to go places with me (sometimes) but if other family members ask he says no.
I also wish he would exercise more. We have a walking track about 3 miles from our house. I have ask him to go over there every morning and walk after he gets up but he won't.

I hope you are having a good day!!

Liz

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 hear from his disability claim. Maybe soon.
Donnie is not driving at all now. It was completely his choice. I think he is just so afraid of wrecking but he is also afraid of going anywhere alone.
I adopted my 2 foster sons April 16th and we all went out of town on a trip. Donnie did pretty good. He worried a lot about his little dog and couldn't wait to get home to check on her. We went to a restaurant to eat and the buffet was in another room. I went and helped him fix his plate and I went back to the table to get something. when I went back to him he said "I forgot where we are setting" I had to show him.
His mind is sooo bad. It is like taking care of a 3 yr old in a man's body.
He spends his entire day sitting in a recliner, holding his dog, and watching TV.
He hardly ever talks anymore. he calls his mom everyday but she does all the talking and he talks to our son Dalynn on the phone everyday but it is hard for Dalynn to understand what he is saying.

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 from 1 tablet 2x per day to 1/2 tablet 2x per day. He said that might help Donnie to want to get up more and do more but on the flip side of that, his movements could worsen and his anger outburst and mood could get worse.
I started him on the 1/2 pill 2x per day last Wednesday and by Saturday he started getting VERY agitated. He has yelled at me and the boys numerous times and gotten so upset over nothing. I have also noticed his balance being worse and his hand and legs jerking more. But his speech has been better.
I'm gonna try to give it one more week and if he continues to get worse, I am gonna go back to the 1 pill 2x per day.
It is amazing that 1/2 pill could make that much difference.
SS/disability is sending Donnie to their dr on May 18. Maybe he will get his disability started after that.
I hope all is doing well.

Liz

we are going to the disability dr. today for Donnie to be evaluated.
This will determine if he gets to draw or not.
please pray he will

Thank you,
Liz

Liz,

I'm new to the message board but have read your story. Hoping your husband was approved for Disability and that you're going through calmer waters. Thinking of you and your family.... Sharon

THANK YOU SHARON. AND WELCOME TO THIS SITE. IT IS VERY HELPFUL.

LIZ

We went to the disability Dr. and I think she could tell really quickly how bad Donnie was.
She ask him 3 questions.
#1 who is our president? he sat for along time and said "I don't know"
#2 what colors is our American flag? he again sat for along time and said "I don't know"
#3 count backwards starting with 20. he struggled so bad but finally made it to 15.

as sad as it was to watch him, maybe it will get his disability started quickly.
His mind is sooooo bad.
He has some movement, balance and emotional problems but his HD seems to be attacking his mind the most.
He is so dependent on me and barely does anything for himself anymore. and he won't do anything or go anywhere if I am not with him.

also another issue we have had happen 2 times in the past month. once being yesterday. he has pooped on himself.
is this another issue of HD or could it be something else? If it is HD, what causes this? has anyone else had this problem?

I wish I had someone to tell me this is the stage Donnie is in considering what he is going thru. this is what you can expect next and this is when it's gonna happen.

Liz,

Hi! Thank you for your kind welcome to this board!

I can remember going to the doctor with my son's father and them asking him similar questions. It was so painful to see someone once so
bright having his memory robbed by HD and unable to answer. Can't say, Liz, that I know just how you feel, not being you, but can most
certainly empathize.

Wish it were possible to say definitively what stage your Donnie is in, but sometimes things happen that are in one stage, and then they might not happen again so you don't really know. No two people with HD are the same. Sometimes it hits physically first, then mentally, or the other way around, and then sometimes kind of leapfrog.

You said in an earlier post something to the effect that you felt people were tired of reading your posts or not caring anymore. Please never feel that, ok? Those of us who are caregivers, and those with HD, are all on this journey together--though in different ways and at different stages-- and sometimes just don't have a chance different days to get to the computer. You help me with your posts more than you know...

Good night for now.

Sharon

Liz, how are you doing today? Are you and the family doing anything fun this weekend? Is Donnie doing okay? Just thought I'd drop a quick line to you. My son and I watched a couple of episodes of the new "Cosmos" program together and now he's eating lunch. We'll probably look in on the world of "Scrubs" via the boxed set later.

Sharon

P.S. Have to literally run to the grocery store and get more coffee and tea. See you later!

Sharon,
We had a pretty good weekend. We went bowling Sat. night and Donnie did pretty good. he was a little on edge and ill and I had to tell him more than once to be sweet.
In church yesterday, I could tell him moving more than normal. he was rubbing his leg a lot and I ask if it was hurting and he said no. Also his back was hurting him really bad last night.....could this have anything to do with HD?
I hope all is good for you and your son.
I have found a new HD support page. It is on face book. It's call Huntington's disease, the good, bad, and ugly it is a really good site.

Liz

Liz, I'm so glad you and Donnie had a nice weekend with a bowling night! As far as his back hurting, the increased involuntary movements could be a strain on it. My son sometimes looks as though he's rubbing his leg, but I think he's trying to stop it moving. Yes, the Facebook HD support group is very good too. So many nice people but also some very sad situations... Thank you for your sweet note. It's very hot here the last couple of days and the day camp kids wore me out! Ran a couple of errands after work, then went to get Alex some of his favorite foods at the grocery store. Made baked pork chops tonight with mashed potatoes, green beans, and homemade apple sauce. Unfortunately I misstimed just how long the chops had been in the oven and they were a little too well-done. Alex was great about it; he's always known when dinner's ready--the smoke alarm goes off! He now lets me cut up his food so it's easier for him to eat. Even though the meat was a quite "chewy" even cut up, he still ate a good bit of his dinner! Just waiting for some sherbet to thaw a little so it's not too cold for him. Good night, Liz!

I've been on that site for 2 years now, how can I find you there?

Vicky

Vicky,
I have no idea. Sorry.

Sharon,

Thank you, we did have fun but this week he's been kind-of- agitated more than normal. I'm afraid it won't be long till we will be increasing his medicine.
Keep cooking. I'm sure your son loves it.
I hope you all have a great peaceful weekend

Liz

Hi, Liz!

I saw your message over in another section (changing Username) and decided to send you one back here in your post.

How are things going with you? How is your husband doing? Are your sons busy with summer activities?

Any word regarding Donnie's application for Disability? Hope you hear soon!

I had to laugh when you wrote about my son loving my cooking but the poor guy has had to suffer it most of his life! Funny
thing though, when he was with his former fiancée, he would sometimes call and ask how to make one of his favorites because
the girl only wanted to get takeout!

Thinking of you. If you like, you can send me private messages through here, ok? Did you sign up with the Facebook Huntington's
site as well?

Write back soon, Liz, and I'll return a note as soon as possible.

Your friend,

Sharon

Sharon,
My boys are doing good. Dalton (17) works at sonic and is working a lot of hours this summer. Christian (13) is spending a lot of time at our city pool chasing girls. Lol. Dalynn (22) works a lot. has a lot going on right now with his girlfriend.
Donnie on the other hand is doing about the same. I hope to hear something from the disability tomorrow.
I am also in the process of doing a "make a wish" thru Dream foundation, for Donnie. Back in January I ask him if there was anything he could do before he got too sick, what would it be and he started crying and said I would like to go to the Grand Canyon but I know we can't afford it. I have gave it some thought but more lately and I got to researching, and there is an organization that grants wishes to adults. I spoke to them and they said this was very possible. I am soooo excited. I want to spend as much "happy time" with him as possible.

on a sad note: last night, after church, I made a bon-fire for us and we were making smores. Christian said let's tell stories. I said ok, you start. he told a funny story. I said ok Donnie it's your turn. He said "I don't know what to tell" I said "tell Christian how we met" and he sat there for a few minutes and just looked at me. I said "go ahead Donnie. tell Christian how we met and fell in love". He looked at me and said " I don't remember" my world just crushed!!!!!
all I could do was sit there and cry and cry!!!
I HATE HD AND WHAT IT HAS TOOK FROM DONNIE, ME AND MY FAMILY!!!!!!!
so needless to say, this is not a good day for me

Liz

Liz, hi again!

I was just about to turn in but decided to check this site and found your note. Your Dalynn, Dalton and Christian are very busy young men!

Your story about sitting around the bonfire and making s'mores really got to me. It must have been so hard for you to realize that Donnie's memory of one of the most important parts of your life together--your meeting and courtship--has been erased by HD. But you know, Liz, his honesty in telling you he doesn't remember was a moment of truth that although hard to hear was a big step for him, don't you think? He wasn't trying to be hurtful; he just doesn't know anymore how you two got together.

When I took Don to the V.A. for an evaluation about twenty years ago, they asked him his birthday, where he was from, what the date was, and other salient points, he just couldn't answer. They turned to me for the answers and I could see the look of shock and dismay on his face that he was stunned not to know the most basic facts about his life.

Yes, the disease has robbed you, Donnie and the boys of many things and it's terribly sad. Of course it's made for a very difficult day, Liz.

Do you have family photo albums and scrapbooks of the boys' accomplishments or favorite things that Donnie loves that perhaps you and the kids have made or given to him on special occasions? Perhaps your next time you're all together, you could bring these things out and see just what Donnie might remember. I did this with a friend's grandmother who had Alzheimer's whom I took care of a few years back for awhile. It would take her a bit to get started remembering, but then I'd ask her about, say, a photo of a family wedding, "Who is this couple at the table?" and it would come back to her. Perhaps if you, Dalynn, Dalton, and Christian do this, it might help.

Try and get some rest, Liz, ok? Thanks for writing back. Remember what Scarlett O'Hara said, "Tomorrow's another day...". I hope it's a better one for you...

Sharon

Sharon,
It's always so good to hear from you. Thank you for your support. Yes, we just have to take this life day to day.

We had a scare Saturday. We are camping and there is a beach/lake. We were swimming and Donnie had gotten up to his neck. I told him not to go any further. He was kindof bobbling around and then he must have hit a drop-off. he went under and he couldn't get back up. I was standing pretty close to him so I reached out to him and he drug me out with him. of course it was over my head too. I got behind him and pushed him toward the bank. He was still underwater. finally I got him close enough that he could touch. That was soooo scary.

Your husband, Don, how long did he suffer with HD? did he go thru all the stages?
How is your son Alex? How does he spend his days?

Donnie's disability is still in a "pending stage"
I sent off his "make a wish" application. I hope to hear from that soon.

I can also see an increase to Donnie's movements. They are still very mild, but noticeable .

I hope you and Alex are having a peaceful day!!!

Liz

Liz,

I can't imagine just how frightened you must have been on Saturday when you were swimming, Donnie went under the water, and pulled you in as well! You were so brave and found the presence of mind to get behind Donnie and push him toward the shore... How wonderful, though, that you were able to go camping up at the lake. Did the boys go too?

My late former husband started showing signs of HD when in his late twenties and passed away at the age of 48. Yes, Liz, he went through all the stages but I didn't realize he was in the last one at the time. It's a very long story, one I'm too exhausted to tell right now. Sorry, but if there's a way to send private messages on here, I'll tell you then, ok?

Alex spends his time on his computer and watching television. He moved back home two years ago after a long engagement ended. Since that time we've watched the boxed sets of, or via Netflix "Fringe", "Sons of Anarchy", "30 Rock", "Lost", "The Sopranos", "Raising Hope", "Cosmos", "New Girl", and are now halfway through "Scrubs".

His schedule had returned to pretty much normal last week, with him getting up early in the morning and going to bed around 9 or 10, but is slowly going back to the flipside. He must have gone to bed quite late last night because when I got home from work this afternoon, he'd just arisen.

I try to get him to walk to the grocery store with me, or perhaps go over to the nearby Denny's, but he's not up to it. Perhaps when my sister comes to visit, we'll be able to persuade him to go out with us to a place where she and I can karaoke and he could try to play pool as his dad did.

It's always lovely visiting with you, Liz, and I thank you for your support too!

I'm sure you and Donnie will hear soon about the disability decision, "Make A Wish" is a wonderful organization and how great it would be if they can do something unforgettable for you and him.

You mentioned that you're seeing an increase in Donnie's movements but that they're mildly noticeable. He may be exerting control over them when others are around as Don would do around family and Alex tries to do as well. Men are so stoic and like the males of many species, always want to appear strong and healthy. Don would hide his movements around all members of the family but my Mom, Alex, and me. Alex won't let others see them except for my sister and me. It took a lot out of Don when others were around and he would be exhausted when company would leave. The same goes for Alex now...

Well, my friend, I've gone on and on... Better go now and fix something for Alex's supper. Take care, Liz, will write again soon, ok? S

Sharon,

Thank you for your encouragement and kind words. I would love to hear your whole story sometime. I know how exhausting it is, look how long my post is. lol
I just literally got the call that Donnie's disability was APPROVED!!! praise the Lord.
Dalynn and Christian were there at the lake but Dalton has had to work.
I hope it made Dalynn (my 22 yr old that thinks his dad "is not that bad. and that if I would leave him alone and quit babying him, he would do more) see just how fast he can go under and not be able to help himself.
Dalynn carries him fishing in the boat and I beg him to make sure Donnie wears a life-jacket and he will say "mom he don't need it" and I stress to him that yes he does. He is so stubborn.lol he gets that from me.
Dalynn is carrying him to the Tennessee river to spend the night in a hotel and fish all weekend this weekend for fathers day. I'm glad but it also worries me cause I'm afraid Dalynn won't watch him like I do.

Donnie watches a lot of TV but I don't think he even comprehends what he is watching.
Donnie goes to bed between 8:30 and 9 and gets up about 8:30-9 in the morning. He sleeps in the recliner a lot during the day also.
You could be right about Donnie trying to hide his movements more when he's around people.
I can usually get Donnie to go places with me but only if I am right beside him. I try to get him to do different things around the house while I am at work and he won't.
My heart breaks for you and what you went thru with your husband and now with your son. I am so thankful that Dalynn tested negative but I worry about him just the same. When he was 18 he was having a lot of stomach problems. he dips tobacco. I took him to have the light ran and the dr told him then if he did not stop dipping he would have mouth, throat, and stomach cancer by the time he was 30. well of course "stubborn" didn't quit and now he coughs all the time and his ulcers are bleeding.
Well, I guess I need to get to work. lol. I hope you and Alex have a great day.

Liz

Congratulations, to you Liz, and Donnie, for getting approved for Disability!

I'll write you more later, but didn't want to forget to send you a note for that!

Have a great evening, ok?

S