ALS From Both Sides, Care of an ALS Patient By Diane Huberty, Retired RN, Certified Neuro Nurse and ALS Patient

Ineffective Coughing

I remember all too well the hours spent trying to clear my airway with a cough too weak to do the job. Frightening for everyone and so exhausting! Get a Cough Assist machine as soon as possible. CoughAssist A Cough Assist machine mimics a strong, natural cough. A full breath is pushed in through a mouth piece then the pressure is abruptly reversed to a suction level causing the equivalent of a good cough. Quick and easy. The machine can be set to automatic or to manual where the patient times his cough with the machine's inhale and reverse cycle. I don't recommend the manual setting because if you feel really short of breath it is hard to relax and time your cough. Not to mention that someone as uncoordinated as I am may never get the hang of it!

The Cough Assist can be used with a mouthpiece or a mask. It can also be put on a trach. It is portable at 10x11x17 inches and 26 pounds.

Ideally you have a Pulmonologist, and if you don't it is time to get one. A neurologist and family doctor are not the ones qualified and experienced with the breathing problems in ALS. The pulmonologist will likely be the one who sees you through to the end.

While waiting for the Cough Assist machine to arrive, here are some things you can do. There are cough medicines that contain guaifenesin that works quickly to thin the mucus so you can cough it out. Mucinex is a good one, and Walmart may still have a generic brand that is just guaifenesin without other stuff. If you can't find that, look for a cough medicine that says it is an expectorant, such as one type of Robitussin. Regular cough medicines usually have cough suppressants in them as well and we don't really want that.

Some people swear by papaya juice for thinning mucus. Others use the liquid from a jar of pickles! Since I have a trach for suctioning (the absolute best way to get the crud out, but a little extreme if you don't need a vent as well) I haven't tried these refrigerator cures but wouldn't be at all surprised if they worked.

When you feel congested, take a generous dose of the "cough medicine" you prefer. Give it a few minutes to work, then lie down. This will feel like the absolute wrong thing to do! But lying down will allow the mucus to be propelled upward more easily with gravity less a factor. Lying down will also allow someone to help by applying a manually assisted cough. To do this place both hands on the abdomen just below the ribs. This can be done with the hands one on top of the other as is done in CPR, or with the thumbs together in the center and hands out toward the sides. Have the patient take three deep breaths if possible and on the third cough, apply a quick thrust, not just pressure. Direct the thrust upward under the ribs. This will give that "Oof" of having the wind knocked out of you. That will add force to the cough and move the mucus upward. Repeat a couple of times. Rest between assists and repeat until the airway is cleared.

suction machine tonsil tip suctionYou will also want a suction machine and what is called a "tonsil tip" plastic wand (brand name Yankauer) to help remove the mucus from the mouth if necessary. You may not have to use the tonsil tip suction wand at all, but just having it ready is a much-needed reassurance for everyone.

Increase water intake to keep the mucus from being thick and sticky. If swallowing water is difficult, make sure it is hot or cold. In between, the water won't trigger a good swallow. You can also try adding a thickener such as "Thick-It" to any liquids to make them just a tiny bit easier to swallow. Water is actually the hardest thing to swallow. Flavored or fizzy drinks may go down better as will milk (not advisable as it can increase congestion) or orange juice. If swallowing liquids is difficult, it is time for a feeding tube. You may not need it yet for nutrition, but good hydration is critical for the lungs. Six to eight cups of water down the tube a day is ideal and helps all body systems including the ever problematic bowels!

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