“ALS Is So Drooling” Chapter 109

There are many reasons a person gets ALS, but the disease puts us all into two groups: Bulbar (Upper Motor Neuron Disease) which starts in the facial region and Limb Onset (Lower Motor Neuron Disease), which starts in the limbs.

Regardless of how ALS first manifests itself, most PALS have an issue with saliva and drooling. I have Bulbar and been dealing with this since very early on in my ALS journey. When my mouth started to sag from muscle weakness, the drooling began. I tried wiping, but the saliva was relentless. Napkins and tissue were a waste of time and my face looked like the bear's ass on the commercial when they didn’t use Charmin. 

Next I tried using folded paper towels, shoving one end in my mouth and leaving the other side sticking out. There were far fewer issues with that approach, but I now looked like a big candle with the wick sticking out. I was using so many towels that we had to buy in bulk from Costco. We went through a box of 600 so fast that the self checkout machine would say “Welcome back David, seems like you were here yesterday.”

We then met with the ENT Doctor who suggested taking a stab at Botox in the salivary glands. I figured if it might stop the flow, then why not give it a go. Well I found out quickly that a two inch needle to the jaw hurts like hell. I tried this twice over six months and it did somewhat help, but I still needed a towel and looked like a candle with a big wick. After the second round I figured it was not worth it.

Finally I thought I would try gauze. I rolled up a 4x4 gauze pad and put it between my teeth and gums. This has worked well at catching the drool and it only gets changed every so often. Now I just look like I have a bad set of dentures and I'm always happy if you see me from afar. However, the gauze can stick to your lip and gums, so you to use some water to release it. If you just pull it out you will bleed, ouch! What I do now is put Aquaphor on my lip and gums to prevent sticking. Aquaphor is like Vaseline without the petroleum.

To further help reduce my amount of saliva I also use glycopyrrolatte. Glycopyrrolate is used to treat peptic ulcers in adults. It is also used to treat chronic, severe drooling caused by certain neurologic disorders. This has definitely helped decrease the amount of drooling. The problem with this is it dries out your eyes too. Going back to last week's blog, having dry eyes is not good for eye gaze users. This continues to be a two steps forward and three steps back dance, and I don’t even walk. Do you think it will be as popular as the “Electric Slide?"

Whatever you do to control your drool, this isn’t just an inconvenience because drooling can be a medical emergency. You might be surprised to learn that people have died choking on their own salvia, and PALS/CALS have to be aware of this.

 Love and Blessings

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