I don't get on this forum very much, so sorry for the late reply. My husband had this OCD with fluids. When he could ambulate on his own we had to turn off all the accessible water supplies off under the sink counters and put a chain and padlock on the fridge. It was horrible. We found no reason for it other than an OCD. He vocalizes babbles constantly also, non-stop unless he is sleeping. Blockiby LizzieAnn - Huntington's Disease Support Center
He had chorea in the videos. It was early facial tics & twitches & typical arm and hand chorea that can look like fidgeting. It was Vanderbilt. Actually, the VA does rate HD the same as sydemham's chorea. My husband was now rated 100% because now he is what I would say is early late stage. He is non-verbal and wheelchair most occassions.by LizzieAnn - Huntington's Disease Support Center
My husband has been diagnosed for 8 years. He has difficulty swallowing and due to that drools almost constantly and tends to choke on his salivia because he cannot not swallow it. Difficult to say with your father if his sensation of swallowing is decreased which may feel like "dry" mouth. Since his mouth seems "ok" with Dr. Pepper and not Coke, I would give him Dr.Pepper andby LizzieAnn - Huntington's Disease Support Center
Thank you for posting the above references for vets. Lizzieannby LizzieAnn - Huntington's Disease Support Center
Tylerfitz, your wife sounds just like my husband at feeding. Mine talks (or should I say makes noises) as even I can no longer understand any of his speech. Food falls out while feeding as he won't stop babbling. I do cottage cheese mixed with yogurt. Soups pureed with crackers to thicken. Cannned mini ravioli as it mushes easily & slides down well and is pretty well rounded for meal and theby LizzieAnn - Huntington's Disease Support Center
I don't know if it's the same thing, but my husband has for years been very noisey and excited with rocking and chorea in the mornings. Not calming down untl later in the morning when the morning dose of meds start taking effect. Talks out loud to himself, etc. I always attributed it to the meds wearing off during the night. After about an hour of being up and med dose, then we give him a larby LizzieAnn - Huntington's Disease Support Center
If you have been on any of the typical meds used by those with HD, try a web search on them with "bone depleting". I think you will find it interesting. Lizzieannby LizzieAnn - Huntington's Disease Support Center
From what I have heard the disability compensation for HD comes down to 2 situations: was the Veteran diagnosed while still active duty or after they got out? If Ms. America was diagnosed after being released from active duty, then from what i have heard it is difficult/impossible to be awarded compensation for HD alone. If you know different, do tell!! Lizzieannby LizzieAnn - Huntington's Disease Support Center
My husband had an early midstage symptom of choking on water. He would not take breaths while drinking and would try to drink a whole glass on one breath which therefore led to choking on drinks. Lizzieannby LizzieAnn - Huntington's Disease Support Center
Since you had the test and it came back negative i would think the odds of testing positive on a second test would be very low odds. You are right. Human or scientific errors are possible and do happen. If it was me, I would want to find out if symptoms I and my daughter are displaying are due to a treatable condition that i would be neglecting in searching for an answer for. I guess, i woulby LizzieAnn - Huntington's Disease Support Center
Hello, i thought i would post to give you some comparisons for your father. My husband is 50 years old and has a CAG of 45. He is also on Haldol for the past year. He is in the later stages of HD. He had previosly been on Risperdal for a long time and then it stopped working and he became very aggitated and we tried differnt meds over a course of a year and nothing seemed to help the aggitatiby LizzieAnn - Huntington's Disease Support Center
I think you will have to ask the insurance company or read the policy carefully and see what type of care they cover, ie: skilled care, home health aide, etc. do they cover care in the home or just in a facility. Most policies have a lifetime limit, so if you can stretch out the care provided in the home as opposed to care in a facility you probably can ensure the policy will cover a longer perby LizzieAnn - Huntington's Disease Support Center
Yes, having a full stomach does help calm the person and the chorea. My husband is advanced in his HD and feeding him is one of the ways of "medicating" him to help keep him calm. Food is a followup to his other meds and works extremely well to help calm him and lessen his chorea. I am reminded of this every morning, as his chorea is bad in the mornings especially since he has gone aby LizzieAnn - Huntington's Disease Support Center
I agree with what Marsha has said. At least, with how my husband reacts to food. He eats like an animal when he see's something he wants. I made a peach cobbler and had it sitting on the stovetop after cooling some. He staggered in the kitchen later and saw it and just started digging his bare hands in the pan to scoop up and eat it. He has had issues with fixating on liquids and over drinby LizzieAnn - Huntington's Disease Support Center
Not much advice on the broken toilet seats other than buy cheap and keep replacing them. I try and put my hand on the back of my husbands neck and lean his head forward when he sits down as this helps with the "plopping down". I have given up on traditional furniture and bought one of these for him to sit in. He likes it.by LizzieAnn - Huntington's Disease Support Center
Not much advice on the broken toilet seats other than buy cheap and keep replacing them. I try and put my hand on the back of my husbands neck and lean his head forward when he sits down as this helps with the "plopping down". I have given up on traditional furniture and bought one of these for him to sit in. He likes it.by LizzieAnn - Huntington's Disease Support Center
So very sorry for your loss! Sometimes this disease is just unexplainable with symptoms and i know you were trying to find answers to her inability to eat as of late. I hope you found answers or at the very least are finding comfort in knowing she is no longer suffering. Lizzieannby LizzieAnn - Huntington's Disease Support Center
Fred, I don't think you will have any problem getting Linda determined Catastrophically Disabled. Actually, the Physician's Assistant that my husband sees at the VA filled out the ok to approve him and it was approved very rapidly, had notice within a month for sure and services were arranged very quickly for personal care and homemaker services. Lizzieannby LizzieAnn - Huntington's Disease Support Center
Howard, All i can start with is "what a freakin mess"!!! I have seen before, in my line of work, the abuse of power and the ensuing rolling ball of snow that develops when a state agency follows up on a possible report of child or adult abuse by a worker that is either given false or exagerated reports. Anyone who happens to be in the path of that "steamroller" of an invby LizzieAnn - Huntington's Disease Support Center
Djcloc, Our 26th wedding anniversary was on 8/16. Happy anniversary!! My husband's home health aide drew a card for me and she had him scribble with crayons on it for me. That was nice as every year prior I save the anniv, b-day or mother's day card from years ago and i let him give me the same card every year. That way he feels like he gave me something. But, this year a fresh crayon scrby LizzieAnn - Huntington's Disease Support Center
Actually, Will that's exactly what i was thinking, the way the VA views other disease's is that there is a chance that they were contracted as a result of exposure and therefore it is presumed that it occured due to exposure while in service....therefore contracted while serving or made worse by service. But, how is that possible with HD? I have not heard of anyone being approved as HD being cby LizzieAnn - Huntington's Disease Support Center
Fred, will be eager to find out what you learn. Please, keep us imformed.by LizzieAnn - Huntington's Disease Support Center
I still don't connect the dots on this one. How is HD ever going to be a service connected disability? I mean, how is HD caused or worsened by a person's service in the military? Does it make a differnce if someone was diagnosed with HD while active duty or after active duty? I always thought ALS was different because it may have actually been caused by coming in contact with something in thby LizzieAnn - Huntington's Disease Support Center
Medicare is the primary and Tricare For Life does the rest. He see's a neuro who is not at the VA and Medicare and Tricare cover that fully. Every 6 months he has to go to VA to see the doc brieflly to review him for the VA homecare and make sure he "still" meets criteria for Adult Day Care, like a review. Otherwise he see's the neuro out in the community. We could get his medsby LizzieAnn - Huntington's Disease Support Center
I didn't know you could get a disabilty check and retirement pension, of course my husband is not disabled from any service connection- since HD was seen after retirement from the military. I did get the VA doc to determine him CATASTROPHICALLY DISABLED which he is category 4 and gets ADULT DAY CARE some days per week and PERSONAL CARE/HOMEMAKER 8 hrs per week alomg with 30 days respite per yeaby LizzieAnn - Huntington's Disease Support Center
Fred, that link doesn't appear to go where you intended. Can you tell us how to get there? Lizzieannby LizzieAnn - Huntington's Disease Support Center
Obviously, this is a very painful time for you. Medications can help, but trudging thru and trying to get him to find the one that might make him more cooperative with you caring for him is key at this point. Sounds like he has been willing to take what medications the doctor has prescribed? My husband has always been cooperative with me and this disease and willingly to let me handle the doctoby LizzieAnn - Huntington's Disease Support Center
I know Phd's in the later stage have difficulty communicating verbally. I know my husband hears a lot of things i am saying but he may not respond or says something back that makes it apppear he did not understand or hear me. Later a word will come out of his mouth ( could be hours later) that tells me he heard atleast some of what i told him. He just can't get the right words to come out. Soby LizzieAnn - Huntington's Disease Support Center
Willie, Anger is often a stage in the disease and makes it very difficult to care for the Phd. Chances are she will not stop being angry if you bring her home. Anger will probably continue when you bring her home compounded with refusing meds at home does not sound like a good combination. How long has she been in the nursing facility? If it has not been long, she may not have had time to adby LizzieAnn - Huntington's Disease Support Center
If you don't have the results yet, can't you ask the doctor to refuse the reults so they are not in your record? Maybe enough time to get things in order and then test. Tell the doc why you want them to cancel the test. They should be able to contact the lab and have the test cancelled? You may still have a chance to get things in order.by LizzieAnn - Huntington's Disease Support Center