Swallowing difficulties is what ultimately led to my husband getting pneumonia and being hospitalized earlier this year. Though you could play arounf with food consistencies yourself, the best way to find out what is safe and what is not is to have a Modified Barium Swallow. This is done with a speech therapist in the xray department where they treat the food with barium (so it will show up on the xray) then he eats the food while being viewed by fluoroscopy (kind of a moving xray.) This will allow the ST and radiologist to see exaclty where the food is going and offer swallowing strategies and food consistencies for safety.

Good luck.
Patty

Thank you Patty. I will definatly look into this
Liz

Well we went back to the Dr. last Thursday. I think he could tell Donnie was alot worst due to the commands he would give Donnie to do and he could not follow thru with them. He also ask him to walk to the door and back and Donnie was so wobbly. It has been 1 year this month that Donnie was diagnosed. The dr wanted to schedule another MRI for him to compare his brain volume from last year to this year. I am anxious to see what It shows.
As I have mentioned before, I don't know somedays how Donnie is still working...I go to church with his boss and last night after church I ask him how he thought Donnie was doing. He said " well Liz I've been wanting to talk to you about him, but I was gonna give it another couple of weeks. I've been noticeing how much worse Donnie is getting. It worries me how bad his balance and cordination is." I told him that I knew exactly what he was saying.
Does anyone know if there is any medication for these symptoms? I know there is medacine for the jerky corea movement but this is really different from that. He struggles walking up and down stairs. Judging distance. Example: Donnie is gonna sit down in a chair....he will plop down in it instead of sitting gracefully....most of the time he seems like hes lucky to hit the chair. He has alot of trouble just walking in general. when you watch him walk it's like his legs are made out of jello. I guess that is what they call the akward gait.
Liz

We got the results from Donnie's MRI yesterday....It showed alot of change in the brain volume but not a drastic change....whatever that means.
I am really considering trying to find another dr. who specializes in HD. Donnie has been going to this same neurologist since he was diagnosed last year....he acts like he's concerned but he has never treated anone with HD and I feel like I'm just left in the the dark about alot of things. If it wasent for this site, I would know so little about what to expect and what was normal.
I can literally see Donnie just getting worse everyday....he told me he was going to try to hang onto his job till Christmas.
I wish I had someone to evaluate him and say " he's in this stage and this is what you can expect next" that would help me prepare so much better.
Liz

Well as I was looking back over previous post it's been almost 2 months since Donnie has had a bad episode till Friday night. He has had some slight mood swings and has suffered physically but Friday night he went into an all out episode.
He had worked outside at his job all day bush hoging and it was very hot and I could tell at lunch he was exausted. I tried to get him to go home but he wouldnt. when I got home at 5 I could tell he was not gonna have a good night. We got to the football game and we were paying to get in. It cost $18 as it has for the past 2 weeks we have been to the games. He took out $16 and kindof threw it down on the table at the lady. she just looked at me and I said Donnie that is not enough. he said yes it is. I said no it's not it cost $18 and you just gave her $16. he said well I'm not giving her anymore. I said Donnie give her 2 more dollars or we will have to leave. The woman was looking at me like she couldn't believe what was happening. I was so embarrissed. By then he was shaking all over but he threw 2 more dollars down on the table....well we went on into the ballgame. In the 4th quarter Christian, my 12 yr old, came up and wanted something to drink so donnie gave him $2 to get a gatorade. he left and came back in a few minutes and ask me if I had any water. I said no, where's your gatorade. Well then Donnie started in talking awful to him. Christian said he laid it down and someone took it. Well you'd have thought that was the worse thing that could ever happen. Donnie started fussing at Christian and saying some pretty rough stuff to him. I was trying to get donnie to calm down that was not the time or place but he wouldn't. He kept on and on and Christian jumped up and yelled at donnie. I told Christian to go stand at the end of the bleachers till it was time to go. I still couldn't get donnie to calm down. The game got over and we were walking to the car and all the way donnie was still mouthing over and over. also in the car and when we got home. Well then me and Donnie got into an argument and I was telling him to leave Christian alone that I would disipline him and that he had made a scene over nothing. I was trying to get him to take his medacine and go to bed but he wouldn't. he was just ranting and raving and walking the floors. He got so mad at me that he pushed me into the back of the couch and was attacking me. He put a big scratch on my face that blead and blead and put bruises on my wrist where he grabbed me.
I finally had enough and I went to bed and he slept on the couch. We were suppose to go to meetings on Sat. and Sun. out of town. I woke him up on Sat. and ask him if he was going. I thought he might have calmed down after getting his medacine and sleeping but he haden't. He said he was not going. So me and the boys went by ourselves. He did not call at all and when we got home yesterday afternoon he just looked at me like he could kill me and walked off. He still hasent spoke to me.
I don't know what to do. I have no one to talk to that understands what this life is like. I know this is just another "normal" day in the life of HD.
Any suggestions??
Liz

Well it took till about Thursday of that week for Donnie to get back to "normal" He apologized to Christian but it's still so hard
He has been strangling alot lately. especially when he layes down at night.
We have been seeing the same Neurologist for the past year and I feel like he has done what he knows to help Donnie, but he has never had an HD patient before Donnie. After his last episode, I googled a Huntington's specialist in Tennessee and got a website for a dr. in N'ville. It is a Huntington's Disease and Chorea Clinic. We have an appt. Monday Oct. 6. I am excited to be taking him there. I hope they can help him and me deal with this disease better.
Had it not been for this site, I would have never made it this far.
I just want to send a special THANK YOU for all the one's who have taken time to respond to my post.

Liz

Well we went to the Dr. in N'ville. I felt like over-all we had a great visit. They spent about 2 1/2 hrs. with Donnie. The dr really analyzed and evaluated Donnie. He said he thought he was on way too much medicine. He actually takes 9 pills per day. He took Donnie off of Seriquel and put him on Resperdone. ( I know I'm not spelling these right) He is gonna try to reduce his medicine per day to two pills and one as needed. We started this on Tues. Well last night when I got home from church he was VERY paranoid and started in with accusations that weren't true. It led to a big argument between us. When he woke up this morning, he didn't bother waking me up like he always does and he never spoke one word to me before he left for work. I don't know if the change in the medicine has anything to do with this, I feel like it does. Maybe he will be better when it's all settled in his system.
It's been so long since anyone has responded back to me on this post.....maybe everyone's just tired of hearing me and my problems. I'm sorry. It just helps me so much to talk about things on here.
Thanks for reading.
Liz

Liz, I see you are wondering about not getting any replies. I must apologize for my self as I have not been reading for awhile. I only had time today to go back just a few post to read about your journey. When I have time I plan to start at the benginning .
I won't to read the entire story and since it appears you have been using this one thread that should make it easier. So if you don't mind a reply without total, I will give my standard reply for medications in that is Donnie on an SSRI along with the antipyscotic (Residone sic)

Liz I'm sorry you haven't gotten the replies you need. I have read many of your post and honestly I don't have the knowledge to answer; not that I don't want to.

I am very interested to hear about the Neurologist you found in Nashville. I will try a PM if you don't mind. Nashville is fairly close and I looked into possibly the same Dr. a while back. Just didn't feel like I could go through all of the testing again to change.

Good Luck,

Mike

Thank you JFB and Mike....I know...what do you say right? Idk what to say to people either... I just feel like my post has gotten so long, that no one reads it anymore.
Donnie seems to be in a really good mood on the new medicine. We have started week 2 and have increased to 1 tab. in the a.m. and 1 tab in the p.m. and have taken him off 3 of his regular med.
On a sad note tho, his boss told me Sunday that he is gonna have to talk to Donnie about going on his disability. That he's just getting worse and worse and is afraid he's gonna get hurt. He wants to meet with us today. I waited till last night to tell Donnie....I was so sad for him. Even tho he knew in his heart that he would eventually have to quit, it's never easy when it comes down to it.
I think it's gonna make Donnie so much worse and progress faster not having a job. He has ALWAYS worked and been such a hard worker.

Mike....the Dr. in Nashville is Dr. Daniel Claassen. The clinic is Huntington's Disease and Chorea clinic. You can google it. I think they are gonna be very helpful
Liz

It is tough leaving your job. There is always life after work as well that is impacted. Then you go on disability and have to worry whether they are going to try to get out of paying.

When Dr. Claassen saw Donnie, did he have to retest and reevaluate him since he was changing Dr's?

Thanks,
Mike

Mike,
Donnie has enough time built up to continue to get paid till Thanksgiving then he will go on short-term disability with them for 6 months then we will try to get his other started. I am just so worried about his mental state. When we got home from the meeting he just cried and cried and seemed so depressed and ill which is understandable.
Dalynn, my son, is not doing good with this at all because he is still in denial and still feels like his dad can do anything.
No he did not have to get retested. we had all of his mri's and records from the other dr. sent up.
Liz

As I mentioned in my previous post, Friday was Donnie's last day at work. He has been very depressed and truthfully, so have I. I feel like I have nothing left inside of me to support him with. He has made comments that he's not worth living, and he is good for nothing anymore cause he can't do anything anymore. This week he has left the stove on twice after he has cooked something.
I know he can't help it and I don't blame him, but I am finding myself sinking deeper and deeper into a depression too. So much that I have thought of which of his pills I could take and how many that I would just go to sleep and never wake up.
I know it would be the cowards way out but I just don't think I can take it anymore. I feel just awful when I think these things cause he's the one dying and I am wanting to die.
I feel like we are about to loose our house and everything we have worked for. I have already traded my car for something cheaper and we showed our house last sunday but they have not gotten back with us. We won't be able to afford it anymore but also I figure that the ten-care or the nursing home, (if Donnie eventually has to go) will put a lien on it.
I feel soooo selfish right now cause I am having a pity-party for myself when I should be reaching out to Donnie, but right now, I am such a mess that I can't.
If there are any prayer-warriors out there, please pray for me and Donnie and a miracle.
Liz

Liz, you and Donnie have a lot on your plate. This is going to be a transition period for both of you. Give it some time so you can acclimate to it. It sounds like talk therapy and possibly medication for depression may be in order. Tell your physician. There is nothing wrong with your feelings. This is a (nope another) life change for you. Hang in there and know you are doing the right thing for you both. The road is tough but you can do it. Tell Donnie I wish him the best and not to get those feelings of having no self worth. It probably will happen but it most of it will pass. He worked for this and worked as long as he could. What he has paid over the years into SSI was his money and it it his money he will be drawing.

Going on disability is tough. I will forewarn you that the insurance carriers don't make it easy but don't get discouraged. Make sure the Neuro is good with supporting the claim. Get ready to jump through some hoops for that insurance and for a while. They will lose information, tell you if they don't get information the claim will be terminated, etc.. They will offer an attorney to help with social security as well. I chose my own although you may not need it. Either way the disability probably has a clause where back pay from social security will be offset and they will get that portion which they have paid out. That is normal.

Don't let the info I just gave you make you more depressed. That is how it usually works and I am trying to give you a heads up so it doesn't drop like a bomb shell, ok.

Mike

Liz, I am sort of a mirror image of your ordel. As the caregiver for my wife, I have been forced from worked for two years now (and reduced work years prior to that). I feel the same as you, I keep hearing the lines for the song "ole man river"--"I am tired of living, but 'fraid of dying."

as for being depressed, I have found that it is worse to actually feel good. Becasue if I feel good, I want to go do something and since I can't, I get angry, which is worse!

So the fear of dying, is about the only thing that keeps me going. yesterday that fear got elevated when the heart doctor that has saved me twice and brought me back once refused to renew my prescriptions since I don't have time to make the 3 hour trip to his office (and I am sure he wants to take another look and that would be a day at the least). However, I think I have my local Dr to continue them.

So Pray for me and I'll pray for you and hopefully we will survive all that is presented to us.

I am not you so I can't say I know how you feel or that I have gone through everything you have, but I've gone down a similar path. My husband has HD. The behaviour changes started early. The man I met who was gentle, loving, sweet, and kind started to have outbursts, challenging behaviours, saying and being unkind to me, fixated (I could keep going on and on) He went on disability when I was 28 but I think he probably should have been earlier than that. He struggled with work and had gone from job to job for years prior to that. That was nine years ago. Because we were both young when this happened we hadn't had years of savings nor had he paid much into CPP. He had bounced from job to job so there were no benefits there either. I live in Canada so things may different then where you live. My husband has been living in a personal care home for 4 years now. It was a hard decision to make and a hard transition. Financially it's a struggle to pay for the personal care home but also for all the other items too ( From clothes to equipment like wheelchairs) I too have had to give up things and make sacrifices so that I can provide for him. Our road hasn't been easy and there have been lots of extremely hard moments. The road ahead is challenging so it's important to find a way to look after you. I can't solve that for you because you are the only you there is. What works for 1 person may not work for the next. It's important to work at finding some joy in life so that you can get through these hard times.

Take care,

Lisa

Thank You Mikee, JFB, and Lisa,

Your words of encouragement mean so much to me but right now I am in such a low place that it is hard to take healing from them.
Right now I am soooo mad. No one in particular, just mad at everything. I am in a very low place of depression and self-pity and like I said, I feel horrible for feeling this way but I can't stop it.
I don't share my feelings with anyone. I have always been a very strong person, full of faith and able to face anything, ( I know that is a lot of my downfall) but it's just my personality. I am really considering ending it all. I could never say that out loud to anyone else but the people on here cause you all don't know me and I can pour out my heart to you and let my guard down.

I am not mad at Donnie for being sick.
I am not mad at God for seemingly leaving me and my family.
I am mad at myself cause I'm not strong enough to get thru it.

Liz

You are strong enough. you can not make him better, you are needed more than ever my friend! Those boys need you! This whole HD crap bites! You need to turn your anger to HD, not yourself. I told you before when the rants started here, I would pick a spot on the wall and pretend it was HD and I was punching the shit out of it! That's how I got through that phase. You can't do it all. That's unrealistic and you and I both know it! I went on meds pretty early on and not sure How it would have gone otherwise! God has not left you and your family, he has CHOSEN you and HE will provide you with what it takes. Do you think for one minute that the people who have gone through this already were pillars if strength? I'm betting they were just as mad, depressed, hurt, helpless, dissappointed, and crushed as we are. You have everything they have had. You don't need a trip to the Wizard, I promise you!
Depression is normal for what we are dealing with, we are losing our spouses on a daily basis. They are losing themselves on a daily basis. There is no real way to prepare for this journey. You can just take it minute by minute and give to God what is beyond your ability. You got this. Put it in perspective as if this were Daylin not Donnie.
Our oldest just got his test back, gene positive CAG 42 same as Dave's. He had Luekemia when he was 12 and We weren't sure how on earth we would get through it. We don't have the choice to not get through this. You need to find a way to un load all of this with someone close by. Just because you never have doesn't mean you never should! That doesn't make you weak, makes you human!
Virtual hugs can only go so far. Mine's on the way to you from Texas!
Vicky

Thank you Vicky. 1st of all I am sooo sorry to hear about your son. Dalynn was tested and he TOLD us he was negative, but I really think he tested positive and just does not want us to know or worry about him....(he kindof gets his stubborn-ness and in-depentance from me) lol.
He forbid the dr to discuss his case or his results with us.
2nd I am sorry for taking so long to write back to you. I am still having a very hard time just getting thru a day. All I do is cry all the time. I can't stop. A lot of the time, I don't even know why I'm crying. I am not sleeping very good at night.
Donnie went back to the Dr. in N'ville yesterday. They are such a good clinic for HD patients. If there is anyone who reads my post that lives anywhere near Nashville, Tn I would encourage you to check them out.
The Dr. was pleased in how the medicine he had Donnie on was helping with his movement and his restless nights. I told him of Donnie's depression since he has not been working and that he doesn't seem to want to do any of the things he used to do like fish and hunt. He prescribed him another medicine to help with his apathy as he called it.
Everything was going great till Dr. Claussen looked at me and said "how are you doing?" well, of course I just lost it and started bawling. I'm sure I looked like a complete phyco. Then all the attention seemed to turn to me (which I absolutely HATE)
I did not want to talk about me or how I was feeling but he took Donnie out of the room for some "test" and sent a counselor in to talk to me. I know they meant well. She ask me if I ever thought about taking my life and I said " all the time" I told her that I prayed everynight that I wouldn't wake up the next day. She said I was very depressed and ask if I would take something if Dr. Claussen prescribed it to me. After much hesitation, I agreed. I start on it tonight.
I feel SO bad for being SO weak!!!!! Donnie is the one that needs all the help, and sympathy that we can give him and I feel like such a horrible person for not being able to get thru this.
Liz

Liz, you are not weak, you are wise. You have to take care of yourself and getting on some medication is worth a try. I'm on something and it didn't work overnight and it's not like a miracle happy pill, but it has taken the edge off my anxiety and depression. I urge you to give it some time and try it. I'm sorry for all you're going through. It really sucks and is really hard. Keep us posted. I'm sure a lot of people read your story and updates, but don't respond because it's difficult to know what to say. But likely there are many here who are praying for you and your family if that offers you any comfort.



Edited 1 time(s). Last edit at 12/02/2014 03:20PM by eve.