well, we started my dad on xenazine, and after about 2 weeks, I went to take him to DR. and noticed very little movements (good, so I thought), but he seemed kind of sedated/lethargic. I went to fill his med box a few days later and I noticed his movements were back. ( I think he must have accidently taken some extra pills). He fell yesterday twice and had to go to ER via ambulance to have his knee checked out, and then today he fell again and the ambulance was called and his blood sugar was 28 (that's really low), they gave him some "sugar" in his IV, but he REFUSED to go to hospital. I went to visit him at his house tonight and he looked really terrible, movements are awful, balance awful, hard to understand him. Major change since I saw him just 4 days ago, I'm not sure if this is from low blood sugar, med changes or what. He has also been incontinent of urine for about a week and his room reeks of it, but he refused to let me clean his clothes, started getting agitated at me, which he hasn't done with me before. Can HD progress in a matter of days like this? Not sure if it is a combo of things or not but he definitely needs more care. He doesn't qualify for Home Health because he doesn't have skill. He can feed and bathe himself so no provider. I live 3 hours away and can't make sure he eats right etc, and am really worried his sugar will drop again and noone will find him until it's too late. His brother whom also had HD is who lives with him. I tried to calmly discuss going to a NH, maybe even just until he got his meds straightened out, was able to get PT for balance/etc and to get his blood sugars better controlled, but he would have NONE of it. Refused!!!! He is not willing to go on his own? What do I do now? Can he be Made/forced to go??? This is hard and this disease is CRAP!!!!

It's the xenaxine, also called tetrabenazine. Can cause severe depression and psychosis, and bad balance problems. Works well for many people, but for some, it is absolute instand disaster.

Thanks, Barb for replying. He has lost 7 pounds in the past 2 weeks, because he is having more trouble swallowing and forgets to eat he says. We took him to DR. yesterday, and are trying to find a rehab that will take him to build back strength and so that he can receive proper nourishment. He has Medicaid only, so it is a little harder to find placement. This is hard.

My father in law didn't do well on the xenaxine either--sounds about the same as your dad. He was fine for a while but things went bad. Horrible balanceing issues and behavior went a bit violent. We had to take him to the hospital until they got his meds stabalized.

We just have him on the lowest dose of xenazine, and it has helped the movements some, the Dr. seems to think maybe it is too much of the diabetic meds, and just not eating well. I guess if it continues, they will prob just take him off the xenazine, I guess time will tell.

One of the problems with tetrabinazine is it makes swallowing worse too. Maybe he has had trouble eating cus of the tetra, and that has thrown his diabetes off, and caused the weight loss. Gee, sorry what you're going through

yeah, the xenazine could be the factor, we just got word that we are going to admit him to the hospital, so hopefully we will get some more experienced doctors that can help him, and then he will be sent to rehab, and then it's up in the air whether it will be LTC or assisted living facility. Thanks again for your replys. Thanks for caring, : )

I think its the meds too. any time some one goes downhill that quickly there has too be a reason. It hapened to my mom when she was in a nursing home. she completely changed and refused to eat. i had to get her off everything and then she was fine.
you also have to be careful of hospitalS. One time my mom was sent to the hospital they new nothing about hd and they just made things worse.
she did the best when she was only taking fish oil no meds
Laura.

Sorry I did not see this post earlier! Yes agree this diease is "CRAP". And what I am about to share with you based on knowledge from my experience makes you feel even crappier--forcing you to push emotions to the back, take great resolve in recognizing safety and health risks are first priority...and yes be ready to be the villian. Once someone is placed in the hospital, liabilty falls to that facility to ensure the patient will be safe at home/community. So always get the treating doctor involved as consult (even the COE)...ask for the socialworker and voice your concerns--prompting evaluations such us neurologicals, swallowing tests, Daily living skills, etc. At all costs you must refuse to take the patient (your father) home. Given that your father is already approved for medicaid... the nursing home waiver is a good possibility... Can always request the social worker have medicaid come out and evaluate him for the nursing home placement. Problem is, a nursing home can not "hold" a patient against his/her will and usually is not a lock down facility. Your father's anger at these actions may then surge to psychiatric care.....and then back to nursing facility...... all stressful, emotional, and horrible to experience but sometimes a necessary evil not to risk health and safety. I can give more info on this if you need.

Hopefully, this is not where you are necessarily at and a stay at the hospital has proven Xenedrine was the problem and other medication adjustments for blood sugar. On Xenedrine, my family member experienced increased movements (painful), with extreme rigidity and dystonia causing the limbs to conturt and get locked in unimaginable positions.

Please let us know how you are making out.

Stacy

I agree with Stacey. Tough times call for very emotionally draining resolve. Been there.

Take care,

Carla