PALS choked on water today

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Marieb425

Active member
Joined
Jun 24, 2022
Messages
96
Reason
CALS
Diagnosis
08/2022
Country
US
State
WA
Hi Everyone,

My husband just told me that he choked on water today. He was diagnosed the end of august with limb onset, but then started having more tongue weakness and slurred speech. When we went to his ALS clinic appointment in October I asked the doctor if these symptoms means he has Bulbar ALS and he said it’s “limb onset with bulbar involvement.”

We’re young (he’s 40) and he’s at home alone during the day because I’m at work and he’s still working from home. I asked if he was coughing and he showed me what it was like and it was definitely like choking. Then he said it ended and he could breathe again.

Eating - is slow going but he’s still been eating foods and I’ve been incorporating more soft foods and soups. Does anyone have advice? I don’t want him to experience this when he’s home alone. Thank you.
 
Water is one of the hardest things to swallow. Tell him to stick to thicker liquids like smoothies (can use non-dairy ingredients like nut or soy milk), juices, lemonade and the like. A long, large diameter straw may be easier than a cup. Stay away from pulp, kernels, skins, seeds, etc.

It may be time to evaluate him for a feeding tube.
 
My husband PALS has Bulbar Onset ALS. I would suggest avoiding watery thin liquids. There are also swallow techniques he can learn that will close his airway passage so the liquids go into his esophagus. But these techniques are only short term solutions. My PALS still has coffee in the AM but I put thickener in it and its more like coffee bisque. (He doesnt mind it ).
Our Clinic pushed for a feeding tube at our first visit. They wanted PALS to have the procedure while his upper body is strong enough. We had the PEG done a week ago. He can still eat food. I use the PEG tube to keep him hydrated and give him his meds.
 
Is there someone close by that could come in if he has a situation while you are at work?
You can get medical alert devices that can automatically call a series of phone numbers.
I'm just thinking that as swallowing gets worse, being alone can be frightening without a plan for help in an emergency.

My husband was bulbar onset, so we started with all these issue too.

I highly recommend looking at a feeding tube early. He can still eat and drink once it is in, but can choose what to take by mouth. To start with he may just take in water through the tube.
 
Thank you all! I’m worried about him being home alone too. Previously I was just worried about him eating and now I’m worried about drinking too :/ he is pretty stoic and didn’t want to check in with the dr office, but I will tomorrow.

I’ll try and make him more smoothies and other drinks and I’m going to get him a straw. I’ll look into an alert device as well.

He’s on Radicava ORS, Riluzole, and Relyvrio and I keep hoping that things might slow down, but I don’t know if it’s just unrealistic hope at this point.
 
There is some evidence that nuedexta can temporarily improve bulbar symptoms for a few months especially swallow. Ask your clinic. It is an off label use so often the insurance looks for reports of emotional lability
 
Agree. We asked for Nudexta. And the Clinic specifically needed issues with emotions- laughing, crying. We laugh the most when I cant understand him or when he falls and we cant get him back up. (Uninjured). I am terrified of him falling actually.
Sometimes you have to laugh or you will cry.
 
Tom’s wife - I love the “sometimes you have to laugh or you will cry” 💕

I’ll ask about the Nuedexta but I don’t think he’s had any emotional lability symptoms and Cigna has been a huge pain with the prescriptions so I bet we would be in for a battle. But I feel like it could be worth trying.
 
Let’s just say emotional lability isn’t something seen on exam. It is what the patient and family say happens you can look on the nuedexta website they have a questionnaire that goes over symptoms
 
Nikki - good point! Thank you. I’ll go look at their website now.
 
yep just report the symptoms as being apparent to you ....
 
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