I Just Can't Catch A Break

ALS does not take a vacation. Nor do any of the other illnesses known to mankind where we cannot treat or eliminate the symptoms. We can't even cure the common cold, although there are medications out there to reduce the symptoms so it has a lesser impact on our life. ALS, Alzheimer's, MS, Parkinson's; the list goes on and on, diseases from which there is no respite, for which there is little or no treatment. It's interesting to note that most of these are neurological diseases.

While I may be here in a beautiful location, enjoying the sights and sounds of the seaside, ALS continues to steal from me, continues to abscond with my abilities, my strength, my energy. Here, in this place of ultimate relaxation, I continue to fight to accomplish the simplest of tasks; getting dressed, getting into my wheelchair, moving about in a carpeted hotel room. No matter where I am, I am there and ALS is with me.

It's not that I have noticed a great change of late. I most certainly am aware of the trends in my body, my weakening arms, the loss of fine motor control in my hands, and now in my lips and cheek. The socially correct answer to people asking how I am is "fine", but I am most certainly not "fine". I am worse today than I was yesterday, and I will be worse tomorrow than I am today.

Sometimes it is the smallest things that really drive home this point. Right now I am in a hotel with a high bed. It is a real struggle to get on and off. When I dress, I need to get on the bed, so I like to dress before I get up in the morning, in this situation. I can work my pants back on while on the toilet, mostly, so I get dressed then go use the bathroom. Except this morning I grabbed a new pair of boxers I bought the other day, only to realize they were the wrong size. So I had to get another pair from my suitcase, the suitcase on the other side of the room. Which meant getting out of bed, getting new shorts, getting back on the bed, and finally getting dressed.

I've decided to revert back to my standard routine, the one I followed yesterday, where I go to the bathroom first, then get back onto the bed to dress. I am not in a hurry. I did the bathroom part, but not the getting dressed part. That high bed is real work for me, and I am in no hurry to expend that energy. ALS does not take a vacation; I just can't seem to catch a break.