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 Choking and Coughing 
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Joined: Wed Mar 09, 2011 12:22 am
Posts: 75
Post Choking and Coughing
Well, I don't know how many of you have these same behaviours, but Chris is eating like a man on fire! He is absolutely shoveling it in at manic speed. We have tried over and over to get him to slow down. Now he is choking. He had been coughing quite a bit and getting just a little choked, but Friday he had a regular Heimlech moment. Now he is going to be placed on a Mechanical soft diet. they are trying to get his weight up a bit..he is down from 178 to 150# but is eating everything..still losing weight.

Any of this sound like your LOs?

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~~Debra, 52, wife to Chris, 64 DX Vascular Dementia 9/10; Alz 10 or 11/2010; Pseudo Dementia 01/11; LBD in 03/11..Was at home until 4/29, 2011, now in a Alz fac./dementia unit.
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Sun May 08, 2011 1:13 am
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Joined: Sat Jul 31, 2010 5:28 pm
Posts: 317
Post Re: Choking and Coughing
Yes. This sounds exactly like my husband except he isn't choking yet. But he shovels it in at an amazing pace. Nothing else interests him except for food. He is just like a compulsive addict. There doesn't seem to be any enjoyment or savoring of food...It's just forkful after forkful. I think it is a compulsive behavior. I might add, he also thinkd that others have altered his food but he eats it anyway because, other people are eating it and they don't fall over dead." The neuro says that shows some insight. Okay. Smiles, Nan


Sun May 08, 2011 11:30 am
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Joined: Sun Aug 29, 2010 5:46 pm
Posts: 610
Post Re: Choking and Coughing
My mother isn't exactly wolfing down her food, but she does eat a lot and food seems to be her major source of enjoyment, and she obsesses about what she is being fed at the SNF and what I can bring for her snacks.

She has always loved chocolate and every week wants me to bring more, which I do because, first, she still eats her meals so the chocolate isn't replacing her normal diet, and second, she has lost weight despite her remarkable intake of chocolate and other treats, down about 25 pounds since her admission in February of 2010. (At that time, she had maybe 15 pounds to lose, so at this point her weight loss is not an issue.)

Anyway, my sister often reminds me that as our mother's world shrinks, what remains looms larger. So it seems to be with food.

Julianne


Sun May 08, 2011 1:19 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3402
Location: Vermont
Post Re: Choking and Coughing
When my dad could still move his arms and hands, he ate very quickly too, just shoveling in the food like there was no tomorrow. He in 18 months he lost over 100 lb. By the time he'd moved into the ALF he'd lost 35 lb, and just kept losing a lot after that. He weighed less than 100 lb. by the time he died. His drs. thought he might have cancer but he refused any testing so we will never know. Lynn

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Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Sun May 08, 2011 1:36 pm
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Joined: Wed Sep 30, 2009 8:25 am
Posts: 227
Post Re: Choking and Coughing
Sounds very familiar. My MIL eats everything on her plate. She shovels in mouthful after mouthful with barely a pause. She doesn't even know that there is conversation around her. She just eats. It wouldn't matter how much I put on her plate, she just goes for it!

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Donna (age 56) caregiver for mother-in-law Margaret (age 88).


Sun May 08, 2011 3:25 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Choking and Coughing
This is an interesting thread to me. Coy also lost about 40 pounds, in spite of continued levels of food intake. I'm sure Lewy just messes with metabolism and calories don't count the same way they used to.

(On a side note, Coy also has Congetive Heart Failure, and as a way of heading off problems before they occur he weighs each day on a scale that sends his information to a monitoring station. If the weight goes up dramatically and suddenly, a nurse calls to check on his condition. As a part of the weighing routine a recorded message announces his current weight and then says or displays "Your maximum allowed weight is 150." Arggghhh. No! That is merely the weight at which the nurse would get concerned if it occurred suddenly. It is not in any other sense a "maximum." His doctor would be happy if he gained acutal weight -- not water weight -- over that magic number. I would be happy. But Coy sees that message and says, "Gee I'm close to the maximum. I'd better watch what I eat." I have complained about this several times to the agency. Recently they did a phone survey of customer satisfaction and I brought that up again. With dementia, this is a very hard concept for Coy to grasp. The nurse taking the survey confided that it isn't only people with dementia that are confused by that message. So maybe they can get the software people to change it!)

I don't remember Coy ever shoveling the food in. In fact he eats the way he does everything these days -- very slooooowly. I sometimes warm his food up mid-meal. This is more of an issue in a restaurant than it is at home. But he still likes eating out and is still able to, so I just expect he'll eat less than 1/3 of what he is served and that he'll have the rest later in the day. Probably this slow eating helps minimize his choking problems. In my local support group other people have commented on how long it takes their LOs to eat. I'm surprised to read about the opposite problem.

This truly is a customized disease, isn't it?!

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Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Sun May 08, 2011 4:03 pm
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
Post Re: Choking and Coughing
Jeanne - for us the progression was shoveling the food in as fast as he could but later, when his arms and hands became very weak and uncoordinated, he ate very slowly and eventually had to be fed. His left arm especially just stopped working almost totally and then eventually his right arm.
It may be different for different people, but also it depends on the stage they are in. It was probably the last 6 months my dad had to be fed because of weakness and lack of muscle coordination. Lynn

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Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Sun May 08, 2011 6:12 pm
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Joined: Fri Dec 31, 2010 3:07 pm
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Location: Minnesota
Post Re: Choking and Coughing
Lynn, I am sure that it is different for different people, and also in different stages. For Coy, the slowness is not related to weakness or lack of muscle coordination. He still bowls. He just does every thing slowly. If there is some reason we have to hurry, I help him get dressed and I stand around cuing him to keep him on task. If it is important that he complete a meal a little more promptly I cut up his food for him, butter his bread, etc. But mostly I just let him take a long time. No harm done. Like others have said, he tends to eat what is put before him. If he serves himself he'll take a huge bowl of ice cream. If I serve him a smaller portion, that is enough for him, too.

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Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Sun May 08, 2011 6:57 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Choking and Coughing
Debra,

I've heard of this sort of food shoveling in disorders that affect the frontal lobe -- FTDbv, PSP, CBD -- but haven't heard of it in DLB or PDD. The only thing I know of to do is to limit the amount of food that is placed on the eater's plate.

Unexplained weight loss is part of many neurodegenerative disorders. We don't know if the metabolism has changed, if the movement problems (tremor, for example, or myoclonus) contribute to the use of food energy, or if the body is less efficient in processing food.

Robin


Sun May 08, 2011 7:20 pm
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Joined: Fri Dec 31, 2010 3:07 pm
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Location: Minnesota
Post Re: Choking and Coughing
Robin, that is very interesting about food shoveling and frontal lobe problems.

I wonder how this data is collected. For example, in the Mayo study, I fill out lots of forms and answers lots of questions about Coy's behaviors, but I have never been asked about his eating patterns. Half the people in that study could have DLB or PDD and also experience the food-shoveling behavior, but I don't think the study would have any way of capturing that.

So I wonder whether you haven't heard of it in relation to DLB because it doesn't exist, or whether it just hasn't been studied yet. (I'm sure if there has been a published study you'd have heard of it! 8) )

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Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Mon May 09, 2011 3:55 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Choking and Coughing
At an AD seminar we were told it was common in AD!

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Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Mon May 09, 2011 10:18 am
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Joined: Mon Feb 14, 2011 10:22 pm
Posts: 190
Location: Portland, Or
Post Re: Choking and Coughing
My mom eats at a normal pace and is still able to feed herself, but she chokes and then has a terrible coughing spell that can last up to 10-15 minutes. It doesn't happen every time she eats but probably 4 or 5 times a week and I don't know know if we should just put up with it for now or request a swallow study, any suggestions?

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Ellen 59, caregiver for mom Marion 81,dx LBD Feb 2011


Mon Jul 04, 2011 1:30 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Choking and Coughing
I think a swallowing study is in order. If a deficit is found, there are measures that can reduce risk of aspiration.

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Mon Jul 04, 2011 1:35 am
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
Post Re: Choking and Coughing
Ellen,
Ask the neurologist for a referral to a modified barium swallow study. Ask the speech/language pathologist if you can stay in the room while the study is being performed so you can see what's going on. It may be necessary to put your mom on a pureed diet or to thicken liquids. But dysphagia is part of LBD (and many other disorders) and it's not a symptom that's hugely addressable.
Robin


Mon Jul 04, 2011 10:58 am
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Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Re: Choking and Coughing
I read somewhere (wish I could remember the source) that it is part of LBD for a LO to eat anything and everything in front of them, even to the point of making themselves sick. And Mom does exactly that.

When Mom first entered the SNF, she still had her preferences as to what she ate and would turn her nose up at the traditional things I knew she disliked. So I asked that a dish of cottage cheese be on each meal tray - just in case, and Mom knew it was there just in case. Now, however, there is often too much food on Mom's tray. (I've talked about this with the food service manager but the dining staff just keep piling it on.) And Mom eats, mechanically, everything that is on her tray, whether she likes it or not. I try to be with her for meals when I can and she does take smaller bites (usually). But she just keeps eating and coughing and choking. She's on a mechanical soft diet, which seems to help a bit. But what helps more, I've noticed, is if she can be persuaded to take a drink often during the meal. I do try to remove extra things when there is too much, but don't often do it successfully. I also try to persuade Mom to stop when she feels stuffed. That has about a 30% success rate.

The mechanical soft diet at this SNF has sometimes been a puzzle to me. They grind up EVERYTHING. Yuck! A couple of weeks ago, Mom was given what was called a ground grilled cheese sandwich, which appeared to be wet bread crumbs with a piece of processed cheese melted over it! That was the last straw. I called the food service manager again and told him that the ground McNuggets were disgusting and the ground grilled cheese sandwich was just plain silly. We often take Mom out for lunch and I know she can still handle soft bread sandwiches and pasta salads (which she really enjoys). So I had them change what they gave her. I asked for, and it seems to be working, any ground meat to be really meat - just the meat with no fillers or fatty coatings. I also asked that she be given real sandwiches when possible and pasta when possible. I did have to sign something that said I wouldn't hold the SNF responsible if something happened as a result of these changes.

Anyway, about the only thing that really works for the coughing and choking is the drinking. And I can't always get Mom to cooperate. Then, the overeating is so odd for Mom and all I can do is be there when I can and try to get her to stop when she's had enough.

Being a compulsive eater myself, it is kind of like the pot calling the kettle black. But when Mom overeats, she vomits. Not fun!

Kate

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Kate [i](Cared for Mom for years before anyone else noticed the symptoms, but the last year of her life was rough and we needed to place her in an SNF, where she passed in February 2012)[/i]


Tue Jul 05, 2011 1:08 pm
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