Variations on a Theme

It’s not uncommon in ALS for something unexpectedly and abruptly to aggravate your airway and throw you into a choking fit. I know from personal experience that these choking, gagging, gasping spells are physically exhausting, frustrating and extremely unnerving for both the choker and the caregiver. The actions to take for choking depend on the type of choking spell you’re having. For example:
  • The Heimlich Choke
    A large piece of food completely blocks the airway. You can’t speak or cough. This is an emergency! It requires the Heimlich maneuver, either by a caregiver or self-administered, to force the blockage up and out. If not successful in two tries, call 911 and continue trying the Heimlich while waiting for help.
  • The Damn-Near Heimlich Choke
    A pill or bit of food sticks in your throat. After a moment you can breathe but with a scary “heeee” sound. Just as you start getting a little air in, you start coughing and/or gagging again. Over and over. You can feel the darn thing stuck in your throat teetering between sliding up and making you gag and sliding down and making you cough. This is scary, exhausting, but you can get a breath in between coughing spells. The Heimlich or assisted cough technique may help. Focus on getting the obstruction up and out, not down the throat, because of the danger that it will lodge more firmly or go into the lungs. Therefore, avoid back whacking!
  • The Foodless Sneaky Choke
    You’re just sitting there minding your own business or even snoozing when suddenly you’re coughing and choking. A simple swallow of saliva goes awry and sends your larynx (vocal cords) into a spasm that closes off your airway. This is called a laryngospasm and isn’t uncommon in ALS. You fight to inhale but nothing happens. You can’t take a breath, can’t call for help, and panic crashes over you. After an eternity, you finally suck in a thin, wheezing, tiny “eeee” breath. Slowly the spasm eases.
    The only thing I’ve found that helps me through these is the hard-learned lesson that they’re intense but short-lived. You’re not really choking, you can get some air, and the spasm will ease in just a moment or two.
    Caregivers can help by giving calm reassurance, gentle back rubbing (not whacking) and other support in riding out the spasm.
  • The Phlegm From Hell Choke
    You try to clear your throat. Hrrrmph. Hrrrrrrrrmph. No good. Over and over you try to break up and cough out the thick clog in the back of your throat until you’re worn out and gasping. My treatment is to take a dose of papaya juice or expectorant (guaifenesin, available over the counter) to thin the secretions. Then I lie down (BiPAP on) and have my caregiver do an assisted cough or use a cough assist machine. By lying down, I don’t have to fight gravity to bring the mucus up. Staying well hydrated can help keep secretions thinner.
  • The Non-Choke Sticker
    A pill or bit of tortilla chip sticks on the way down and sits there feeling like a thorn in your throat. This little sucker can hurt for a day or more. After taking a small sip to make sure I can still swallow, I try taking the longest drink I can. Sometimes this repeated swallowing does the trick.
Advice to Caregivers: In any choking situation, fake being calm and quickly go through a list of possible actions. Ask, “Do you need a Heimlich? Assisted cough? A drink? Cough medicine? Suction?”

Besides the physical and emotional stress of a choking attack, the real danger of suffocation and the loss of calories due to fear of eating, choking can lead to aspiration, in which food or pills go into the lungs and cause life-threatening pneumonia.

Prevention is the key here.
  • A consult with a Speech Therapist and a Swallow Study needs to be done when swallowing problems begin. It is unlikely that an early swallow study will indicate that you must quit eating and drinking. Instead it will show which swallowing muscles are causing the problem and the therapist will give instructions on how to swallow more safely, such as double swallowing, head position, etc.
  • People with even minimal swallowing problems should never eat when home alone.
  • Soft, moist foods are generally easiest to swallow. Dry, crusty, flaky, crumbly foods, or those with small pieces such as rice, raw veggies, or ground beef are tricky. Adding sauces or gravy helps prevent choking.
  • Cut everything into small pieces and take smaller mouthfuls.
  • Bread and melted cheese are especially likely to form large "plugs" and require extra care.
  • Alcoholic drinks before meals increase the risk of choking.
  • The sensory stimulation of hot or cold foods and liquids can increase the muscle response when swallowing.
  • Reduce distractions at meal times. Talking while eating may be sociable, but minimize your part in it.
  • If you choke almost every time you eat and meal times are a dreaded experience, a feeding tube is overdue. If you persist in trying to get all your food and fluids by mouth, you will develop pneumonia from the food getting into your lungs. This is not a "Maybe." This is inevitable. A feeding tube will allow you to get optimal nutrition and fluids, and allow you to continue enjoying those things you can safely swallow as long as possible.

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