ALS: A Crappy Disease

I apologize in advance if this makes anyone uncomfortable. But the fact is that ALS is not a nice condition at all, It is unrelenting.

This morning turned out to be CRAPPY… literally. You see as the condition progresses you begin to slowed down considerably, this applies to everything. All your movements are very calculated and take considerable concentration. Your brain is sending the message to your extremities but your extremities behave like petulant children, they just won’t listen. This includes being able to get in and out of your wheelchair if you are still capable of doing so.

This is where it gets interesting. If and when you experience intestinal issues it is difficult for a normal person to make it to the facilities if the issue is urgent. This is compounded when you are transformed into a human Sloth. This ultimately results in an embarrassing and humiliating situation. Yes it is uncomfortable for everyone involved. However this is to be expected and requires the patient to surrender to the condition. This is not to be confused with giving up. Simply that one has to put aside their pride and accept the fact that The New Normal is ever-evolving.

For pALS in more advanced progression this essential function can turn into an actual medical concern. As the body looses movement it effects so much more than we are aware of. For many, irregular bowl movement can develop into a true medical emergency. Requiring less than comfortable interventions.

Gastrointestinal health becomes yet another concern for the care team to monitor. Experimenting with solutions until the right one is found. Jst one more issue to contend with in the laundry list that comes with ALS.

After any such episode all one can do is be thankful for Fabreze, medical gloves and baby wipes.

I know, TMI!

ALS doesn’t really give a damn about anyone’s sensibilities. Appreciate your ability to perform your “doodies” unassisted… That’s all I got to say about that!

The Juan and Only

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