Frontal Failure

When you are trapped in a wheelchair or cannot get out of bed easily, having a hefty serving of chili is a bit risky. Having two hefty servings is down right dangerous. The risk goes up exponentially, not geometrically. I am a risk taker. There are outcomes from decisions like this. I should know better.

The biggest parts of the whole equation are the limitations put on me because I am paralyzed from the chest down. There is no ability to just hop up and use the toilet. These events must be planned to arrive at about the same time every day, when a Home Care Aide is here to help with potential problems. I don't know why I say potential problems; there are always problems, none of them potential so much as actual.

It's true with almost every aspect of personal care, that being paralyzed, being in a wheelchair, makes it more difficult, with the concomittant increase is mess and cleaning up. For the men who are reading this, who are not already dealing with it, here is a trial for you. Get a wooden kitchen chair. Wooden is important for potential clean up issues. Sit well back on that chair and, without moving your legs or buttocks, remove your pants and underwear. Too difficult? Then just try pulling out your junk while seated thusly. Once you are in position and ready for action, try peeing into a jug or container of some sort. Let me know how it goes.

For women this problem is substantially more complex. On the other hand, it can be much tidier. There is no junk to haul out, no stream of urine shooting skyward. But they have the added effort of transferring to a toilet or commode chair, something all pALS eventually lose the ability to do. Then what? For most women with ALS, once the ability to transfer leaves, they either need someone to aide with the transfer, or they end up with a supra-pubic catheter.

All in all, I would say the most humiliation from ALS enters into my life through these private activities. Alas, for me, they are not all that private. I need help in getting dressed, getting undressed, and cleaning up afterwards. It's true; I can no longer wipe my own ass, let alone wash and clean it after a disaster. And one of my big life objectives these days is to get through a day without peeing on myself. So far I have failed on all fronts today.