I was hoping someone out there might have some advice. My wife has HD and currently takes two drugs which we assume has a side effect of causing hunger. I am not talking your normal hunger, my wife thinks she is "starving" while on a very full stomach. Ever since we hiked up the risperidone and the amantadine she takes, her appetite has unfortunately sky-rocketted even though her chorea movements are still prominent. I am afraid if we scale back either of the meds, she will have even more difficulty sitting somewhat still. She creaks a kitchen chair to wear I have to keep applying wood glue to the chair legs and cross-supports. Pretty standard stuff for most of you, I assume.

But have you ever dealt with the insatiable appetite? I feel sorry for her as she enters late stages of HD. She used to be a petite size 2 at 110 pounds (normal) and she is now size 8-10 and weighs about 140 lbs. The neurologist doesn't really have an answer other than "don't worry about diet as someday she will struggle to put weight on".

Right now the struggle is "starving" all the time. It's difficult to see her go through this, eating constantly. Any advice out there? Thanks in advance! Ty

My wife is not starving, but in the last year she has began to want to eat nearly all the time and high calorie foods. this seem to occur as her involentary movements incresed.

My first husband had no off button when it came to food after his disease began to progress. We both liked food and had to be careful to keep our weight in check but after he got sick, his ability to control his desire to eat declined and he put on a lot of weight. He was 6'4" tall and so could eat quite a bit but still had to watch it. Whereas before he might eat a donut as an evening snack, after getting sick, he would go pick up a dozen and eat several at a time. I am not big on sweets, but once a couple of days after he had gone out to buy a dozen cupcakes, I decided to eat one. He went ballistic on me because at that point he had already eaten eight and would only have three left and he wanted to eat four. I concluded that this was an impulse control problem.

I don't think that impulse control is the problem with everyone with HD who is eating too many calories. I think that for some, this is another impairment in feedback about their bodies. Not knowing where their body is in space is a common one, so is feeling hot when it is cold and they are lightly dressed.

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 drinking until he vomits and then continuing to drink fluids uncontrolled to where we had to turn the sink faucet water supply off to stop him and still to this day hide all liquid drinks in the house so he can't see them. Meds helped some but we still hide the drinks to not trigger the behavior.

I am a PHD who is hungry all the time. Here is what I do to thrive.

I let myself eat frequently. (All the time.)

I eat almonds, salmon, beets, beet greens, kale, protein, as part of a well rounded diet.
I eat oranges and apples, and drink orange juice.
I eat frequently.
For example, I leave a container of almonds around on top of the refrigerator, and when I pass it, I have some almonds.
I eat almonds and raisins.

I drink green tea, and I put raisins in it, or candied ginger. Yum.

I put together this eating plan, after attending a nutrition course at a local medical center.

I feed myself what I crave, which is what is listed above.

I think in the future, nutrition will be an integral part of HD treatment.