swallowing

[sallyb]

Can i ask what foods were the first to be difficult to swallow or was it fluids? We are not going down the PEG route&there is increased coughing,v rarely on fluids,worst in the evenings and it seems to be worst on foods that are sucked (eg chocolate etc). It is the elephant in the room as we all know it is happening. The thing is i guess i don't feel like anyone has the right to take another thing away from someone who is cognitively fine&understands the risks&also is losing weight. She has told us at each new loss when something was just too hard to do so i guess im hoping it will be the same with this. That said it is upsetting and worrying. i know this is bad so please don't tell me about aspiration,i do understand. i don't know what i am asking really.

 

[sadiemae]

Water is the most difficult to swallow for most. My husband can swallow thin liquids if they are sweet I
Or carbonated. Some folks can not use a straw either. Lettuce is very difficult. So are crackers and cookies. Many folks who love chocolate suck on Hersheys Kisses. Keeping hydrated is so very important. Getting dehydrated can lead to so many different problems. Watermelon is one of my husbands favorites.

 

[Lobster]

Who needs Dignitas when you have peanut butter?

 

[sallyb]

Thanks sadiemae - hydration poor & I hadn't thought of that. I was thinking there was some saliva pooling with the sucking, I don't know... Lobster, I cringed then I laughed - how bad am I?! Talk about black humour..hang in there

 

[marypat]

do you know about chin tucking. after the food is ready to swallow, tuck your chin to your chest to swallow. this helps protect the airway and reduce choking. it should be easy to teach your pals. also she should be able to get a speech therapy visit, one who understands ALS is best. good luck. the carbonated beverages really help me swallow, i even use carbonated water like perrie but cheap

 

[mich5]

Soft breads and small square chocolates sometimes get stuck on the roof of my mouth and I can't move them with my tongue. I feel if I don't get them out soon, I'll choke. Perhaps this is happening? Not sure what size chocolate she's choking on. The dove's are the worst (but the best tasting!). I bite them to break them up and then let them melt.

On the tucking of the chin, a straw reminds me and helps me remember to keep my chin tucked while drinking, but may not work for everyone.

 

[cubcake]

A straw has been the only way my husband had been able to drink anything for almost a year, now. Now we are having trouble with that. I don't know if it's a muscle thing, or the message just isn't getting from brain to mouth. In any case, I found these handy dandy one-way valves on the internet that you put on the far end of the straw. Once the liquid gets sucked into the straw (by me), it won't go back down. It just sits in the straw waiting for my dh to get the tiniest bit of suction going to get the liquid in his mouth. I'm thinking these may buy us a few weeks.

 

[sallyb]

Thanks all for replies, helpful as always. Any suggestions for calorie/carb tastic easily digestible snacks - biscuits & crackers not doable. Would some type of cake/sponge be any easier or is that a really dim question!

 

[ltbeauti]

i have bulbar onset. i use the chin tuck method described above for all liquids. i getchoked on thin liquids more easily. i drink an Ensure (generic brand) a day when i take my meds. the thicker supplement helps me swallow the pills. some people use applesauce.

i eat cottage cheese with fruit, puddings, a lot.and yougurts.
i can eat chips and most foods, but my tongue in atrophied so i have to m ove food around to my back teeth to chew with a fork or spoon.
i have been maintaining my weight for a year now.

 

[Nannette RC]

I have difficulty swallowing and I use Thick Up or Thick It. You just stir it in liquids and it is so much easier to swallow. You can make the liquid as thick or thin as you want. I get it at Walgreens for about $10.00 and it lasts quite a while. It is tasteless and colorless.

 

[Tofinodays]

My husband made the same decision as yours regarding the risks of aspiration. As long as we was able to eat solid foods, he did so with full knowledge of the risks and it was scary but felt okay to me as it was important to him. We gradually moved from small pieces of regular foods to softer foods (e.g. mashed potatoes, vegetable casseroles). Protein shakes made with whole milk were a mainstay of his breakfast. Surprisingly, he could eat bran muffins as long as they were warmed with lots of butter to keep them moist. Once he started to choke on these, we moved to oatmeal with whole bran cooked in milk, with whipping cream added to increase fat and calories. Now he is on a fully pureed diet. I have found that creamed soups and pureed ice cream with protein powder and chocolate sauce work quite well. I also puree fruit and add lots of water and thickener to keep him hydrated. This is the antithesis of a healthy diet for people without ALS but it stabilized his weight.

 

[cubcake]

This is the antithesis of a healthy diet for people without ALS but it stabilized his weight.

Funny you should mention that. My husband is still at full weight, even on a totally puréed diet and choking. When people ask how, I always say through really bad cooking!

 

[sallyb]

Thanks everyone. I think I share your problem cupcake- gourmet dining it ain't! Now back to the kitchen for a think...

 

[hangingon1]

PEG tubes, bi pap, all just prolong the inevitable. I am so glad that my sweet wife of 39 yrs. forgo the prolonging of her life. She died valiantly not clinging to the impossible and trusting in the Lord.