Thick-It

At my last clinic appointment the speech therapist recommended I try Thick-It with my drinks, so I got some at the drugstore. It is basically a form of cornstarch that you mix with thin liquids to make them thicker. I tried it when I got it but didn't like it so haven't used it.

But my swallowing has gotten worse, and for the past week or two I've been coughing almost all day long. It feels like a little bit of water is getting down into my lungs. I don't have much getting in, it's not like I'm totally choking or anything, it seems to be just a little bit but it's still irritating. Plus I worry about possibly getting pneumonia, I've heard of that happening to other people. I don't know if this little bit of water leakage is bad enough to cause something like that though.

Anyway I thought I better try the Thick-It, and it does seem to help. (Actually it's Thick-It 2, which I'm sure is much better than old fashioned Thick-It 1.) I add some flavored syrups to the water and it doesn't taste too bad. I wonder if it would work with soda, has anybody tried that? What would happen with the bubbles, would it foam up or something.

I'm still having a problem that the thicker liquid seems not to quench my thirst that well. I think I've had plenty of water today but my throat feels dry and I feel thirsty now. I guess I'll just try drinking some more and see what happens. Maybe I will get used to it after a while. It's nice to be coughing less.

Hal, try drinking water out of the tap. I installed bar type taps throughout my house and if I am bent right over I can get a good drink by slurping the water out of the stream. Something about being bent over and with my head on the side makes it easier, It doesnt work as good for me now as it did last summer but it still sort of works.

I detest Thick-it or any thickened drinks but still sort of manage with my morning smoothie that uses a banana for thickening. The risk of aspiration pneumonia is less with plain water than with other liquids or with water and food. As long as your mouth is clean then water isn't too bad but will cause a lot of coughing when it goes the wrong way.

Good luck, my drinking buddy!

You can probably get good advice on all this from the PBP board too, as all the people on that board have bulbar symptoms (which you now have).

My mother found that sparkling water (eg. mineral water) was easier to drink than still water when she first had bulbar symptoms. You could try that. The sparkling water does help with quenching thirst, whereas the thickened water doesn't feel as thirst-quenching (even though it is just as hydrating as unthickened).

Eventually you will need a peg for hydration, and it is better to get that before you aspirate water or food and cause an infection or start to have scary choking symptoms.

I'm sorry to hear you have reached this stage in the disease. Inability to drink water is horrible. My mother recently acquired a juicer and her grandchildren mix up wonderful fruit cocktails which are then thickened (and sometimes ice and rum are added to spice up life a little). But she really misses being able to drink water through her mouth.

All the best

sesl

Also forgot to say that a speech therapist should be able to watch you trying to swallow water and suggest different ways to hold your head and neck that might assist with the swallowing. I remember they did this with Mum, and she found that if she held her chin and neck a certain way it was easier to swallow. But it was a while ago and I can't remember what they told her to do. It was something as simple as holding her head straight and not bending down over the cup - some small change like that.

sesl

I use thick it in Hawaiian punch lemonade it really is not bad and it helps with quenching your thirst. Did you have a barium swallow? That will determine how thick your drinks should be. I have to have everything the thickness of honey, I have went out to dinner and drank whatever I wanted but through a straw mixed in with the food in my mouth.

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I signed up new but not really ) signed up twice before but either forgot my name or pass word and no mater how many times I wrote for help no one ever replied. BUT Hi ! I am a thick in not liker . My Neuro gave me a script with like a thousand refills I do like the pre thicken drinks. I've had Lemon water, Cranberry juice, apple juice. My Speech therapist told me about them gave me samples. they can get costly. I don't need to be drinking or eating anything to have a choking attack. I have reflux, or my own saliva. there have been days where i feel like I have been ran over by a truck as all I do is choke. Lots of times hot juices come up or food pieces like I like peanuts ( i will never eat them again) come up stick to back of my tongue and I can not stop choking. My husband sits me up and feeds me small piece of yummy potato bread which i eat each piece slowly until mush and it pushes anything stuck down and stops my choking ! I was on hospice few years ago and for about three years my diet was boost. This past Spring my Speech therapist did a few months three times a week Vital Stim treatments which is recommended for pals and she has had success with other and I am so glad it helped me ! Sense then I eat everything again ! The only time I choke now is on the reflux of food and hot juices. I take meds for that but does not always help. I am grateful for the Vital Stim and Medicare paid 100 percent ! My Speech therapist did tell me everyone even healthy people aspirate at times. The safest to get in your lungs is water as it will dissolve . When I go to my lung/breathing Dr. he does xray of lungs along with pulmonary function tests. Talk to your Speech therapist for ideas and mayb evn Vital Stim treatments !

My mom hated the Thick-It but didn't mind "Simply Thick" it was way better imo. It is a gel and comes in different consistencies. It really wasn't too bad. We mixed it with Rootbeer with no problems, I also did rootbeer floats and lots of kool-aid. She also had special cups to drink from they had the tops cut out so she could tuck her chin down and drink from the cup.

Hal,
According to my ST, a small amount of clear water aspirated in lungs is not a big deal. She says it's much better then thickenned water.
In addtion, she was mentioning carbonated drinks.
Important thing is to determine what thickness level you have to be at: honey, nectar....
Have you tried VitaMix; I got mine following JoelC suggestion.
I make drinks with a lot of ice and it's easier to swallow.
Erica.
P.S> I also use Biotene mouthwash, it doesnt contain alcohol, but is a/bacterial and moisturizing.

Hal,

It seems they always recommend the thick-it at the clinc, but then, in contrast, the SLPs say how much people don't like to use it, and that the clear thin liquids which the thick-it helps keep out of the lungs, aren't the problematic invaders anyway (its the milk based and food going into lungs which are the worst). I've gotten this impression from the SLPs I've seen, and as I moved to a different state, I had to start all over with a new group, both groups have not been that enthusiastic about thick-it.

If you've had the modified barium swallow which clearly showed aspiration into lungs, then, your liquids need to be thickened to nectar consistency, or whatever thickness your SLP considers safe. In my experience, even though I've shown penetration and mild aspiration with thin consistency, its not been with every swallow. The SLPs have not said I have to use it. (because of the aversion factor, and saving this until it is an absolute must) However, being advised to switch to carbonated drinks have been a godsend for getting hydration. I'm able to swallow the carbonated so much better. We just buy the el-cheapo grocery store brand of seltzer water, in cans. They seem to be better because the larger portions go flat too quickly. By saying I can swallow it better, I mean not only choke less, but am able to consume more.

We've also switched over to soy milk. It does not cause the phlegm which cows milk can.

If you've not had a swallow study done recently, that should be an ASAP for you. Have them get you on the schedule as an emergency visit if necessary.

I worked in a hospice once and for thirst we used pinepple or other fruit juices frozen into small chunks which could melt on the tongue. Do not know if this might help....

Rose, Thank you for great info.Erica

halfin said:

. It feels like a little bit of water is getting down into my lungs. I don't have much getting in, it's not like I'm totally choking or anything, it seems to be just a little bit but it's still irritating. Plus I worry about possibly getting pneumonia, I've heard of that happening to other people. I don't know if this little bit of water leakage is bad enough to cause something like that though.

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Hal,

I wanted to add that I used to have this exact same feeling. In fact during this stretch of time I did have aspiration pneumonia once, but it was not severe and antiobiotics cleared it up really quick, I felt better within hours of my first dose. I still don't understand the entirety of what was going on, I'd insist it wasn't during swallows. I was not choking in the sense of gagging, just lots of coughing.

One of my swallow studies found that the sphincter muscle at top of esophagus did not always open. It did most of the time, but they also caught it staying closed. Its my personal feeling, that back when I was able to swallow larger quantities of liquid per swallow, it was more of a problem because it would stack up in my larynx before emptying. Back then I could chug a beverage if thirsty, I can't swallow very much at a time now, just a tiny espresso spoon full, and even that it often takes more than one swallow to get it down, and I think because of this, that I have fewer problems with liquids going down the wrong way. A couple of times lately I've felt a cold drink go up towards my nose, and then come back down, and I've choked on that because my airway was open at the time as I was not actively swallowing. Who knew there was so much going on in there!

Thank you for all the good advice! I checked my records and I did have a swallow study on Oct 15. At the time I had "penetration" only when taking multiple swallows (glug-glug-glug). The therapist recommended that I just take one sip at a time while drinking, and not use a straw. I've been doing that and it worked OK until recently when I started all this coughing.

I've continued to use the Thick-It the past few days and I am getting used to it. It's not too bad, I add some sweetener. I'm experimenting with different thickness, making it thicker if I start coughing again. It does seem to help and I've been coughing much less.

I wonder if it is too soon for another swallow study? I am going to the ALS clinic next week, we'll see what they say.