Lori,

If your LO doesn't remember how to swallow and can't follow instructions on this, have you considered placing your LO on hospice? In dementia patients, forgetting how to swallow can likely be tied to a hospice certification.

When your LO was able to make his/her own decisions, was a feeding tube discussed?

Robin

I have now entered the stage of swallowing issues for PE. Since July he has declined rapidly-it's been over 10 years now- and it was the physical therapist who now comes twice a week- we call them a kiné- who gave me the lowdown of the swallowing problem. It's the Parkinson's part of Lewy's that freezes the throat muscles. Since he has trouble swallowing, he doesn't salivate, which makes it all worse. Perhaps that's common knowledge, but I hadn't a clue. So I have to now purée everything and have him take the medicine with thicker fruit juice-the smoothies- or undo them and put them in yoghurts, etc. At least soup goes down pretty well, so I grind up cooked hamburg or lentils for protein in it. Rice , even chopped up, doesn't go down well except in the soup. It certainly is hard finding food that isn't too dull. Today PE was quite fine with the kiné who has him walk some, move his legs, etc, then this afternoon actually got up by himself, walked to the kitchen, but then collapsed halfway to the floor, meaning I had to try to pull him back up to drag him back to the sofa. My arm is just about ragged! It would be impossible to lift him from the floor if he had fallen down, so I had to be very aggressive and shout commands. I try to think of my future plan to go on a rest cruise, but I guess that will have to wait!! Dinny Wolff

Dinny - re: trying to make mushy foods more tasty - have you tried adding herbs, juices, tomato paste, smoked meats, lemon or lime rind or other flavorful things? I've never had to do the pureed food thing, but is there a reason you can't puree interesting meals that you make for yourself and just add stuff to make them more moist? For instance, I love shrimp or chicken marinated in tequila and lime juice, cooked on the grill. If you made 2 servings of that, pureed one with some added liquid, like chicken broth, that would be quite tasty I'd think.

Hi Dinny,
Ken has been in an ALF for a week now. I make sure I'm there for all meals (although part of the reason for that is guilt for him being there instead of home) and the caregiver who makes his meals has made several that have had onion, garlic or bell pepper in them and you'd be surprised at how flavorful a little bit of spice can make a pureed meal. He is able to eat pancakes, scrambled eggs, banana and other softish foods. I've been making a smoothie every morning for him that he finishes for lunch that contains liquid vitamins, calcium, glucosamine, fish oil, coconut oil (as recommended on this site: I do believe it's working, he talked a bit today) and metamucil all mixed into Ensure, yogurt and frozen bananas. I tried many different frozen berries but all have either seeds or skins that cause choking.
I've found that hamburger meat doesn't puree enough for Ken but that chicken or tuna work great.
One more handy hint: my stepson took over one morning for me assisting with his Dad's breakfast and when it came time to give him his (crushed) meds he added a big dollop of maple syrup to the applesauce/med mixture and Ken took it with no problem. He has since stopped 'pocketing' his med mixture and holding it until he can spit it out. We alternate jam with the syrup and he likes both equally as well. Of course this wouldn't work for a diabetic. Sher

My husband so far has no problem with swallowing. However, he has no gag reflex. This was demonstrated to me by one of his doctors last year and I was alarmed. But he eats well as long as things are cut up into small pieces.

I've never known Mom to have problems with choking - or at least not in a way that seemed important. But just in the last few weeks, she has had several bouts of choking during evening meals. Not regularly, but frequent enough to cause me to notice now. And where she used to eat too much, I'm noticing that it is getting hard to get her interested in dinner now. I'm going to ask the day care to watch for poor appetite or choking and let me know when it happens.
I haven't cut her food into small bites, yet. I just slice her meats and sometimes cut veggies into small sizes. Actually, everyone's meats get cut so that Mom doesn't feel called out for difficulties eating.
Do you think I need to start being more careful with every meal? Do I need to start cutting everything into very small bites? Some soft foods, maybe? Mom doesn't want soups any more because of her tremors. She can't get the soup to her mouth without most of it spilling her on it.
She will really resist softened foods and doesn't want anything noticeable that will bring attention to her situation.
I may be getting alarmed over nothing, but can anyone tell me if it has started this way for them?

Thanks.

Kate

Hi Kate,
In our situation Ken has not been aware enough to know that he was getting special cut-up foods nor did he mind when I started to help feed him soup, etc. because of the tremors. As Irene also said was the case with her LO, Ken started by rejecting tiny bits of food such as hulls from peas and corn or skin from tomatoes, rice bits, etc. but eating the bite of food then pushing the offensive bit to the edge of his tongue and picking it off with his fingers. That went on for a long time before this inability to swallow began. I did notice that his appetite fell off but in retrospect he probably just couldn't deal with some of the foods I was offering him. Sher

Leone - since my dad just started having swallowing issues a few days ago, I can tell you what's happened for him. It may vary with others so hopefully you'll get some other input.
My dad has been losing his appetite for all his favorite things in the past 5 or 6 weeks, which is apparently typical as a person enters end of life. Hasn't eaten meat for weeks, grilled cheese, tomato soup and other hearty foods stopped about the middle of Oct. So he's been eating softer stuff anyway, but I didn't notice swallowing issues until a few days ago. He wanted ice cream, and he had some Klondike bars in his freezer so I cut off a small chunk and put it in his mouth. Just the small amount of chocolate on the outside of the icecream was enough to make him start coughing because he aspirated it (I think) and then eventually coughed it up. Same thing with watermelon and cantalope, the only things he's really eaten in weeks. He chews and chews, then eventually spits out the "pulp", or aspirates some and then coughs it out. We are now giving him only plain ice cream (no chunks, no hard chocolate shell, etc.) and fluids when he asks for them. He wanted tapioca a few days ago and told me it tasted horrible when I gave it to him, as he did with several things he used to love. So, until he totally stops eating, I guess it's ice cream, juice and milkshakes (and Ensure if he'll drink it). Anything even sort of solid can't be swallowed and it's pretty obvious. Lynn

Lynn -
Typically DLB patients have swallowing difficulty much earlier in the disease process -- well before the dying stage.

Leone -
Swallowing problems can suddenly appear. They can also fluctuate (with other motor symptoms). You might ask your husband's MD to order a modified barium swallow study so that you can get a baseline exam.

I'm sorry to hear about the swallowing issues. My mother who has vascular dementia (93 yo) has had some swallowing issues for several years. She spits out the skin of a grape, chews and chews on meat and them spits a wad out. She still does okay with puddings and ice cream...cookies that sort of dissolve in her mouth, a soft egg and lightly toasted bread without the crust on it. This stage can (doesn't always) go on for a long time. Trust Dale. He'll let you know what he can eat.

This disease is a robber isn't it? Steals lives one little skill at a time....until there's not much left.

Nan

I've noticed that lately my MIL picks through her soups and stews and leaves noodles, beans, corn, and other chunky bits in her bowl. She'll chew and chew her meat and swallow it, but can't do it for these other things. I've been suspecting swallowing problems off and on for a couple of months. Never a dull moment in Lewy land.

Not sure about LBD, but swallowing problems in other disorders, like stroke, will show up with thin liquids, first, because they don't provide the stimulus necessary for a diminished swallowing response. A radiological study will often show liquids flowing into the trachea even without any choking. While aspiration often causes choking, there is also silent aspiration.

My husband has no gag reflex. I don't know if that's a PD/LBD thing or not.

Sher,
My husband has had Parkinson's for eleven years and has recently been told he has lbd for most likely several years.
Two years ago he was hospitalized for pneumoia. They said it was due to asperation. He had a swallow study done and was found to be a silent asperator. Liquids were the main problem. He was also clearing his thoat , like a small cough, when he ate. They advised thickening his liquids and using nosey glasses. We tried both but then we were told of Vital Stem Theraphy. It took awhile to find a therapist trained in this new swallow treatment but we went and it really worked. My husband had a swallow test done six months later and they found no silent asperation.
We were suprised and pleased because most of his therapy's (speech, physical, etc.) have not helped. We were told the treatment may need to be repeated in a few years.

take care,
roxy