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By lurkingforacure On 2012.01.22 23:39
It seems like my husband is always eating and it's driving me crazy and I'm worried to death all at the same time. He has gained a lot of weight and complains about how heavy he is. And it is impossible to plan meals or have any food on hand.

When I go to heat something up, it's gone. When I go to make dinner or pack the kids' lunches, it's gone. I wouldn't be so frustrated if I didn't make full, healthy meals. I even make extra, so he can eat plenty and I have enough for a lunch the next day...but it's never there. Tonight I made steak and vegetables and not two hours after dinner he was rummaging in the refrigerator, wanting the chicken salad I made for lunches tomorrow! I told him he couldn't have it, that it was for lunches, but I know that tomorrow morning when I go open the refrigerator to make lunches for the kids it will be gone. The extra sausage links I made last night for our lunch today were gone this morning....all of them! Which means that sometime last night after our sausage dinner and before I got up this morning, he had eaten all of the leftovers. How can you not feel worse when you eat like that?

Last night he also found the special snacks I bought for our kid's study group and opened them right up and ate them! I couldn't take them to study group this afternoon since he had opened them and had to make a special trip to the store to get substitutes. His response was that he had only eaten a little and that I hadn't done a good job of hiding them in the first place. I don't know if he meant to be funny but I am beyond laughing at this.

I've hidden food all over the house but he always finds it. I have taken to hiding food in my kids' dresser drawers, which is ridiculous to open the sock drawer and find a bag of pretzels or package of applesauces in there, but I don't know what else to do. I have tried being patient and understanding, but it seems to be getting worse, he is getting heavier, and I am running out of hiding places.

This also frustrates me because he will tell me how horrible he feels, how tired, how exhausted, yet will be up at all hours eating. I can't help but wonder how much of his misery is attributable to the crazy eating habits he has adopted? I know some of his eating is because he is miserable, and is probably trying to comfort himself. OK, I get that. Some of the excess eating is because he eats little during the day because it conflicts with his meds, and I get that, too. But I don't get the gorging and constant snacking after 4pm and then again at 10pm and midnight, 1am, 2am, 3am, etc.. When I've been to the store, I can barely get all the grocery bags unloaded into the house (by myself) before he is in the kitchen, opening everything up. Food is starting to repulse me and I know that's not healthy, either.

I can't be the only one with this problem! And I can't go to the grocery store every day, although I have thought of that. Is anyone else dealing with this?

By susger8 On 2012.01.23 07:31
I seriously think there is something about either PD or the meds that causes the frequent snacking. With my dad it's not nearly as severe as your husband, but he has a tremendous sweet tooth. When he was living on his own he ate nothing but junk food -- even canned frosting, ick. He would go through several boxes of Entenman's doughnuts a week; ice cream, pudding, candy, cookies.

I kind of think it's related to the compulsive behaviors we sometimes see -- gambling, porn, online games, shopping. Does your husband take Requip or Mirapex? They seem to make compulsions worse.

If I were in your situation I would be thinking about a lock on the fridge and the pantry, as awful as that sounds.


By Reflection On 2012.01.23 09:08
A researcher/pathologist named Braak (the theory is called the Braak hypothesis) believes that PD progresses in a fairly predictable way though the brain, reaching the frontal lobes as it advances.

See, for example,

As this occurs, the symptoms of PD start to overlap with frontal temporal issues. A very typical symptom in those disorders is overeating - see:

Sweets are typically the biggest problem. Some persons develop a particular taste for bananas, which is apparently kind of self-medicating with the precursor to serotonin.

While this behavior might be triggered by the PD/dopamine agonists compulsion/impulse control issues, my understanding is that in some cases, it's more related in the advancing PD.

I don't know of a treatment. This doesn't help solve your problem, and it must be awfully frustrating, as you're trying to keep family life as normal as possible. But understanding this may well be a real compulsion, from his disease, might make it a bit easier to understand.

By plcpainter On 2012.01.23 12:27
Fascinating studies at the Mayo. Thanks for sharing these links! My hubby has always been a trim fellow but has gained 14 pounds in the last 4 months. I got a box of chocolates for my birthday a few weeks ago and found him standing at the counter eating one after another! I hid them!! Now he's offered just a couple a day. He also opened a Christmas box of candies that were a specific gift to me and ate them. That is the part that is SO out of character with his pre-PD personality: He NEVER would have thought to open a gift that was given to me. Many are the moments when I feel I am living with a stranger.

By karolinakitty On 2012.01.23 12:56
I would have to agree with Reflection about the frontal lobe issue.....also...there are many folks mis-diagnosed with PD at first who actually have FLD Frontal Lobe Disorder...many of the symptoms are similar but as time goes on and FLD progresses the more the FLD particulars are showing....

I know that the snacking is an issue and talked to our movement doc about it and he seemed unaware of this..(i did that quick survey here about a year ago for him) My guy pretty much is over is not on the top of the list as much as before but he still likes his ice cream :)

By abp0822 On 2012.01.23 16:25
While not to this extreme, my father does the same. He also has PD-related dementia so wil forget that he's been served and eaten his dessert. He's compulsive about eating sweets especially. I think it's one of the ways PD progresses unfortunately. Sorry I have no advice.

By Reflection On 2012.01.23 21:44
treatment possibly worth investigating:

By Reflection On 2012.01.24 10:21
See also

By lurkingforacure On 2012.01.24 11:08

I've asked every neuro we've seen (all MDS, by the way) about whether we show ANY symptoms that would point to a PD+ or other dx, but no. Not that I would want that, I just need to know what all we are facing.

I think my hubby is bored and snacking gives him comfort. Hell, he's up all night, I'd be bored too. He says he feels like he has low blood sugar, and how can I argue with that, I'm not in his body and don't know how he feels. If I couldn't eat very much during the day because of meds, I would probably feel deprived as well. What's funny, not funny but interesting, really, is that he will say he hasn't eaten anything all day yet I peel and section him a grapefruit every morning and then I've seen him grab a handful of nuts after that, and I'll find an apple core on the bathroom vanity I'm realizing he isn't going without all food all day, it's just less...albeit a lot less.

Another insight: he is very scared about losing weight because he has read and actually been told by some very clueless people that when you start to lose weight with PD, it's all over. One of these people had a father who passed away from PD and she felt it appropriate to tell my husband all about it and how horrible it was for the family, focusing, of course, on the end stage. Some people, mercy, they are beyond obtuse.

I've read that some researchers are thinking Alz. is a type of diabetes and if they're right, maybe PD is too.

None of this helps my situation, though. I still am hiding food for my family like I live in a concentration camp and don't see any way to deal with this other than that. I'm even keeping canned goods in the back of my car, for Pete's sake.

By Pearly4 On 2012.01.24 11:47
Just a thought - perhaps you're working it from the wrong angle? Maybe its become part game to him as well as an uncontrollable urge/behavior. Maybe trying to keep the food away from him isn't the best idea. Perhaps the toddler mother's trick of putting HIS food (treats as well as healthy food) in a special container\bowl etc. up front in the fridge for him to locate on first - even putting his name in bold letters ("FRED ONLY") will provide him with an excuse to seek food intended for him alone instead of just choosing anything. Telling someone with his issues/problems not to eat something may not be information he can retain for long. Conversely, after my own mother rummaged through the freezer and found the topper to my son's wedding cake, unwrapped it and ate it (try explaining that to your new DIL!) I found that putting the food I needed for a particular event, etc. into a special container with a red lid, and writing all over the container in permanent ink "PLEASE DO NOT EAT" seemed to work. Once its less of a conflict, maybe his compulsions will ease.

By susger8 On 2012.01.25 07:45
Regarding the weight loss issue: My dad lost a lot of weight after he broke his hip. They kept him without food for several days in the hospital while they did a million tests to make sure he would survive the surgery. That started the weight loss. Then he felt really crummy during his recovery in the rehab center and wasn't eating as much as normal. I was worried about that -- we can't really weigh him, because he can't stand unassisted on the scale, but his shoulders felt so bony.

But inside of a year he gained the weight back and then some. He has days when he doesn't feel like eating his meals, but makes up for it the next day.


By moonswife On 2012.01.26 04:15
Here I am waiting to dole out two o'clock pills and finding the leftovers of 3 coke floats he made after I went to bed. The upside.......all I have in the house is Diet coke and sugar free ice cream. He seems to be sleeping with a smile on his face, the big teddy, so I am not going to scold him. He often complains about bad taste in his mouth. He says water just makes a wet "bad taste". But he gets a gallon of that a day with 9 doses of pills. Balancing yearns with needs everyday.

By parkinit On 2012.02.07 22:07
Our neuro, who had a father with PD, said that the craving for sweets goes with PD. It is crazy sometimes. My spouse woke up in the middle of the night and drank all our coffee creamer (2 pints vanilla flavored). He said he thought it was a carton of chocolate milk (but not black?). Thank goodness it was soy creamer. Even with that, he ingested around around 640 calories in this one drink.

Also, I try not to keep sweets around the house Today, we ate out today. He got no meal, just a cinnamon roll for lunch and powdered sugar donuts for breakfast (which he got before we left his doctor's building) after an appointment!

By ExhaustedBirdy On 2012.03.11 15:03
This is a constant and worrisome problem we have with my fil (father-in-law). He never had much willpower even before his diagnosis, but now, especially since his mobility has declined so radically, the constant eating is astounding! It appears to me that it's not just his appetite that is involved, but is a kind of oral fixation as well. Even before we get him scooted up to the table he is reaching with the one hand that still works to grab at whatever is on his plate as if he hasn't had anything to eat in days. He already eats, at least some, with every single doseage time, plus the three meals. We have to either hide all the sweets or put them up high where he cannot reach them. Also, we cannot leave anything sitting out that he can manage to reach because even if it's immediately after he's stuffed himself at dinner, out goes that reaching hand.

By karolinakitty On 2012.03.11 19:44
Lurking..just wanted to add this on...

like I said before I am more active with Parkies lately and brought this up in a chat room with about 25 people.

All of them have had this issue at one time or another and some still do. Whether older or young onset it seemed it didn't matter. as a group and as we all talked several things come up...

Of course the compulsive reason. Whether due to Requip or Mirapex some felt it was related to that.

Reason 2 - boredom....lots of people eat due to boredom. There isn't much to do when you only sleep a few hours, get up at's the computer or food...

Reason 3 - crossed wiring - we all know that the receptors are not functioning properly...some said they would simply "be hungry" all the time that their appetite transmitter was telling them they needed to eat.....

I know with my guy he had the issue of NOT eating or drinking period for a season...he also had the 2am snack attacks which have ceded....there was a period where if I didn't say anything he wouldn't have eaten or had anything to drink...that seems to have faded for the present but it was very evident...dementia...I think not...not remembering you just ate is one thing but feeling in your stomach and in your overall digestive system that you are full is another....I would assume the opposite could be true also....that you feel hungry all the time so you just eat to satisfy that sensation.

I'm just passing this on and in no way am I a physician or saying this is the way it is. It is just a sampling of others and what they expressed.

By lurkingforacure On 2012.03.12 17:11
Thanks kk for sharing what others say about this, it is maddening for me but I can't imagine how bored my husband must be when he sleeps so little. You're right, what do you do when you are up most of the night but the rest of the family is asleep (or trying to sleep?). I'm working on letting go of my angst and if my husband gains fifty pounds, so be it, I can only do so much.

It's just hard to hear him complain about his pants not fitting after all the food he eats and not say anything!

By parkinit On 2012.03.19 10:57
My spouse doesn't take Mirapex or Requip, but I do believe it is the cross-wiring. We were supposed to be on a "mostly whole foods" diet this past month and he was doing quite well and had lost about 3.5 pounds. Then, due to a fall while I was away shopping, I requested my PWP start going with me to the grocery store again (I don't buy pre-packaged snacks when I shop alone). All kinds of sugary and salty stuff ended up in the cart, then the little girl selling Girl Scout cookies could not be resisted and, lo and behold, he has gained all his weight back. I know we want to indulge, but when I'm faced with lifting him out of bed every morning, I do want him to be slimmer because I don't know how much longer my shoulders can taking the lifting (I'm already having some shoulder problems due to the heavy lifting in the morning, plus the transfers). Yes, we already have a lift bed, but that only gets you so far . . .

By packerman On 2012.03.21 10:06
you may need to look into a Hoyer Lift to get him out of bed.
MIL had one when FIL had Alzheimers and could not help anymore.
i may need to get one someday...hubby outweighs me by 50 lbs.
i think you can find them at medical supply stores.

By parkinit On 2012.03.21 13:57
Yes, a Hoyer lift has already been mentioned by the VA and they can supply to us.

He does not want it, but I guess it may not be him that makes this decision because it is not a decision for him, but for me at this point.

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