Continuing Change

Just when you thought things might be slowing down, Uncle ALS throws you another curveball. Since my swallowing has been slowly copromised, fear of choking has been in the forefront. After a recent episode that required a trip to the emergency room, we decided to bite the bullet and get a G-tube placement. For those of you not familiar with a Gastric tube, it is a small tube that is in direct contact with your stomach. So all my food is now liquid and delivered throughout the day with no more worries about choking. The peace of mind this has brought has been well worth it. Onward and upward!

Hurt me, beat me

When you get far enough along in the adventure, your caregiver takes on the role of being the Mistress of the Tower, you know, as in the Tower of London. Being confined to a wheelchair all day, because you have lost the majority of your ability to move your limbs, requires someone to move them for you to help your circulation. Sometimes, this is uncomfortable because your muscles have decided they’re not really interested in moving. So hurt me, beat me, takes on a new connotation and one that is absolutely necessary: You gotta keep movin’.

Global warming

Ok. I admit it. It’s all my fault. I am the one responsible for global warming. If you remember back a couple of years, scientists were remarking about the increase in temperature around the globe. I find it interesting that this increase in temperature exactly coincides not only with my ALS diagnosis, but one of the side-effects of ALS: an unlimited supply of flatulence.


Make no mistake: you don’t get the nickname Gasius Clay for nothing! And it seems to be a universal phenomenon. No matter what I eat or drink, there is continuous global warming.


My apologies to all.

Butt in a sling

Most of us throughout our lives kept trying to avoid this phenomenon. Try as we might, to a more or lesser degree, each of us has had a seat at least one time. Being a somewhat regular visitor, I was very well prepared when my buddy ALS informed me that my butt was now once again in a sling. Literally.


While it’s nice to have pretty women helping you into your chair, out of your chair, into bed, etc, there unfortunately comes a time when safety takes precedence over being lovingly squashed by women and their chests (bummer).


The Hoyer lift, with its sling, really does make transferring much easier for all concerned. But a word to the wise: once you’re in the sling and up in the air, it’s a really good idea to keep your mouth shut and not bring up some infraction that might have just happened. Otherwise you might just be left high and dry, swinging in the wind with your butt truly in a sling.

Milkshakes

Old-fashioned milkshakes are really good. A little milk, a little flavor, some ice cream, all thrown in an appropriate receptacle with a top and shaken like crazy. Mmm mm good!


It seems that some twisted researcher had the bright idea that this “shaken like crazy” thingy might be great for one’s lungs to vigorously help support expelling all the “nasty stuff” (a technical term) in a clogged set of lungs. Not to be dissuaded by my clear chest x-rays, a contraption arrived one day at the house. Its sole purpose is to wrap around my chest and shake hell out of my lungs. No sooner had this instrument of torture arrived, the manufacturer’s representative showed up to teach us how to inflict maximum annoyance, much to the delight of my caregiver and my wife.


The standard regimen is 20 minutes in the morning and 20 minutes in the afternoon. This device (no doubt designed by the Marquis de Sade himself), really rattles your teeth along with your lungs. So far, I have been able to convince my support team, with a promise to be on my best behavior, that 20 minutes in the morning is enough.

Psycho dog

Anyone who’s owned a dog has many fond memories of all the cute and not so cute activities. In my case, Hunter is 95% a great dog; but the other five percent is off the scale psycho! Be that as it may, there is something endearing about a dog that seems to know when you need assistance. More than once, I have found myself trying to get the attention of my wife or caregiver when they were in another room. While I still speak reasonably clear the volume has diminished considerably. In some way I don’t understand Hunter seems to know they can’t hear me and he jumps off my lap and runs into the other room barking. Maybe he’s not so psycho after all!

A drug addict

Drugs play a major role in almost everyone’s life these days. Some are legal and prescribed for legitimate maladies, some are lightweight recreational compounds, and some are life-wrecking. According to Hugh Hefner who says he has tried them all, swears Viagra is the best. As much as I would like to agree with him, I think there is one that trumps Viagra: Breathing.


You may not think of breathing as a drug but I’m here to tell you that it has all the addiction you can ever possibly want. As I mentioned before, we never think of breathing until we can’t. Today I don’t think much about my breathing until my patented “Vinnie Barbarino, up your nose with a rubber hose” is removed from my face (like during a shower). In about 30 seconds I’m starting to look around; and when I see the apparatus returning to attach itself to my nose, I get giddy with excitement. The first breath after a successful reattachment has got to be the best rush there is. Okay, I admit it: I’m addicted. Do I need to be looking for a 12-step?