Thursday, November 11, 2004

Swallow, whistle, cough

People with ALS has trouble swallowing thin liquids (water is the thinnest beverage), because it tends to leak around our imperfect throat muscles and drip into the airway, causing coughing.

I don't know if I blogged about this yet but there was a time shortly before I started going to the doctors when I was at a restaurant with my wife, drinking water, and all of the sudden I spewed out all this water into her hair. It spewed because I was trying to hold it back in that brief instant when you realize something horrible is happening. Mercifully, I don't think much of it got on her face.

We PWALSes are advised to duck our chin down when swallowing. I do that often, but I have my own technique which works for swallowing with no chin tuck. I think it works for the same reason the chin tuck works.

What I do is force the water forward, and while I do this, the back of the mouth (probably aided by the tongue), pretty much seals up. Then I use the cheeks to mash the water towards the back while at the same time opening the gates. This all happens in an instant. I had to pay attention to my swallowing in order to be able to come up with this description for you.

"You" being someone with ALS who might benefit from swallowing lessons. My able readers would have been well advised to skip this section, but I didn't advise them.

Throughout my life I have been able to emit this really loud, shrieking whistle by curling the tongue and blowing out the side of the mouth. I can also do the normal rounded-lips whistle, but this shrieking whistle is a different thing. Anyway, I can still do it, sort of, but it is no longer loud and sharp. It's kind of warbly and pathetic. I think the problem is that my tongue muscles no longer respond as well, and cannot form the ideal passage for the air.

That horrible cough continues to recede, and I only cough a few times a day now. Mostly on attitude change: lying down, getting up. That sort of thing.

I just want to add, if I may, that I am aware of two people who have it much tougher than I do. One, a woman, has newly-diagnosed ALS ... plus a history of self-emplyment which threatens to deny her Social Security benefits and Medicare. The other, a man, has very serious cancers and is weak from the awful operations. And he has to go back to work Monday so that he can try to hold onto his health insurance. In both cases, this is disgusting. May I just say that there is something deeply wrong with the way we apportion health care in this country?
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