question about swallowing pills

[Kristina1]

Hello everyone. I received a provisional diagnosis of ALS yesterday and a label of "probable ALS." My symptoms are in my speech/swallow area and my dominant left hand.

I was wondering how others with bulbar problems manage swallowing pills. I aspirate frequently on liquids/saliva, and certain foods. Swallowing pills always feels like I am playing Russian Roulette. I always ask my husband to stand nearby because I am terrified of one getting lodged in my airway. I also have an overactive gag reflex which compounds the difficulty.

I have been wanting to supplement with multivitamins, zinc, vit D, etc to keep my health up as best as possible, plus I am now taking the riluzole 2x/day.

Does anyone have any suggestions for helping pills go down right?

Thanks in advance.

 

[affected]

Crush them and mix in something like applesauce, or something similar that you like and will mask the taste. With riluzole you don't want to mix it with anything fatty I believe. Hope that helps

 

[Diane H]

Time for tough talk about the reality of your situation. A feeding tube is the only realistic solution unless you are set against any intervention. Your swallowing will get worse and aspiration pneumonia, dehydration, and malnutrition leading to starvation will follow. Meanwhile, your husband will have to watch and wonder if you are just coughing or actually choking to death in front of him. Insertion of a feeding is a fairly simple procedure. It is painful afterward but the pain is less day by day and generally minimal in a week, then no pain. The feeding tube requires very little daily care, allows you to have good nutrition, hydration, and medication. It allows you to continue eating regular foods that you can still handle without aspirating. Problems are more common the longer you wait to have it inserted. You certainly don't have to get a feeding tube. That is a personal decision that will be supported here no matter what you choose!

 

[Kristina1]

Time for tough talk about the reality of your situation. A feeding tube is the only realistic solution unless you are set against any intervention. Your swallowing will get worse and aspiration pneumonia, dehydration, and malnutrition leading to starvation will follow. Meanwhile, your husband will have to watch and wonder if you are just coughing or actually choking to death in front of him. Insertion of a feeding is a fairly simple procedure. It is painful afterward but the pain is less day by day and generally minimal in a week, then no pain. The feeding tube requires very little daily care, allows you to have good nutrition, hydration, and medication. It allows you to continue eating regular foods that you can still handle without aspirating. Problems are more common the longer you wait to have it inserted. You certainly don't have to get a feeding tube. That is a personal decision that will be supported here no matter what you choose!

Thank you for your frank answer.

I didn't think a feeding tube would be indicated/advised if someone can still self-feed pretty well. Most of my aspiration is from liquids, and certain foods (which I avoid or am careful with). I do worry about pneumonia, for example I have a cold right now, and every time I aspirate a little saliva I wonder if I'm introducing the virus/bacteria to my lungs. But I can feed myself well.

I'm not against getting a g-tube. My son was almost placed with one (he has a feeding disorder comorbid with his autism). But even though he dropped below the 5th percentile for weight the doctors held off to see if he would stabilize and improve. So they gave me the impression that g-tube was a last resort when things are truly dire. Obviously I understand that his condition is completely different from ALS, and of course he was expected to improve, whereas with ALS the expectation is that things will only get worse. So I do get that.

Do some people with ALS start a feeding tube this early for the primary use of taking medication with it and supplementing a bit to keep weight up?

 

[Nikki J]

The issue is your ability to swallow safely which apparently is somewhat compromised. The risk of aspiration is real plus the risk of losing weight which would be very bad for you.

Yes they do place tubes when you use them just for meds and occasional supplementation. This is something to discuss when you see the ALS doctor. Do be aware that most often a feeding tube excludes you from clinical trials but a clinical trial is unproven and placebo possible. I would not delay a tube for that reason if it is needed. Please discuss frankly and fully with the doctor

 

[affected]

I would just say that I would get a second opinion, then get your first clinic appointment and get your head around the diagnosis and plan your strategies together.

For today, having just been diagnosed I think yesterday, I would use something like applesauce. If you are having problems with thin liquids you can consider a thickening agent for the real problem ones.

Be sure this is ALS and allow yourself time to work on a strategy.

 

[Firefighter58]

Kristina so sorry to meet you here, but it is what it is. I have a tube and take all my meds by tube but eat all my meals in the regular manner, it is very easy and no inconvenience. Many others here have and do the same thing.
Al

 

[Kristina1]

Kristina so sorry to meet you here, but it is what it is. I have a tube and take all my meds by tube but eat all my meals in the regular manner, it is very easy and no inconvenience. Many others here have and do the same thing.
Al

Thanks for sharing your experience. This helps put it in perspective as a potential option to discuss with the doctor at the ALS clinic.

Nikki's comment about a tube precluding participation in trials is something I would have to think about as well. I will discuss this issue with the doctor and see what they propose.

Thanks to everyone for your replies.

 

[patrick123]

I got my feeding tube when my FVC dropped to 60%. Doctors don't like placing a g-tube when your FVC go down to 50% or less. But if you are issues with swallowing you should inform your Doctor.

 

[4tloml]

For my husband with bulbar onset, a feeding tube was the way to go for meds and supplemental nutrition while he could still eat by mouth.

But before the tube, when he began choking on meds and liquids as you are, he transitioned from taking meds with water to taking them with nectar (thicker than water), which helped for awhile, then to crushing in applesauce or pudding, and then on to feeding tube.

Also, many vitamins & supplements are available in liquid form or chewables (but avoid the "gummy" form). Even with the feeding tube, I've found those forms are easier to administer.

So sorry for your diagnosis, but glad you've found this forum. Most valuable information source we've found anywhere and amazing support.

 

[lgelb]

Besides liquid and chewable vitamins, some are available in "fast melt" (dissolve in your mouth) forms as well. Second pudding/applesauce/yogurt for now. Get a good pill crusher (they're not all the same).

Current experience with placing a tube in radiology (RIG) as recommended for PALS suggests that it is not just an arbitrary FVC or decline in breathing (PAP can be used during the procedure) as much as decline in swallowing that should drive the decision, as you do not want to wait until you are malnourished or dehydrated, either of which can accelerate progression as your body doesn't have enough fuel, has to work harder, etc.

 

[bkite]

While you are taking in the enormity of this diagnosis and all of change in your life that this means, there is a basic thing that can help. I have a MIC-KEY button that is used for hydrating. I can eat pureed meals.
When I eat, or drink a little water to rinse out my mouth, I keep my chin down and face straight ahead. I get away with a capsule of Nudexta twice a day, taken on a spoon of food. All my supplements go in through the button.
Even for saliva, the posture of my head makes all the difference between choking or being comfortable.