ALS Bytes

For the month of May, ALS Awareness month, I’m doing my best to chronicle what it’s like to have, live with or care for someone with ALS. Although many of the difficulties, thoughts and complications addressed here are based on my personal experience, I’m including the experiences of other PALS (People with ALS) I’ve known personally, online or otherwise, for a more accurate portrayal of the typical PALS. While this is not necessarily my story of life with ALS, but  it could be yours, in the blink of an eye…or, the twitch of a muscle.

Picking up where I left off yesterday…sort of. So far, these last 8 days have been…discomforting. See, I’m the kind of person that repels negativity, for whatever reason, that’s just me. Maybe God’s way of preparing me for life with ALS. I don’t know. What I do know is ALS can be very…negative. I guess I’m trying to tell you that it’s difficult to write about the negative. It’s hard enough just living with it, but reliving it through this blog is something I don’t normally practice. Let’s move on.

Going with ALS…is not pleasant, at times. With the pharma-cocktail I’m on everyday, I’ve learned the hard way (always) that it’s absolutely crucial to consume about twice the recommended daily intake of water to keep things moving. I was never the person you’d see carrying a water bottle, drank coffee mornings, soda, sweet tea etc. But you can’t do that and be on meds that dry out your system, such as those for reflux, drooling and depression, and those have to be maintained without fail or excess, because then the digestive tract shuts down. I’ve had two E/R visits, one by ambulance last July, and I’m still fighting the VA to pay the ambulance bill of $500, because I requested the VA hospital, but they turned us away, their E/R must’ve been full. Anyway, what happens is when you get dehydrated, the body then takes the water from the stool, so you end up, literally trying to crap bricks. Going through that process is awful, probably why people are known to have a heart attack and die on the pot. Also, further complicating the matter is the weakened ability to push, having lost the appropriate muscle for the process.

After a good hour or two on the toilet doing everything you can to pass the brick to avoid the E/R, you’re physically exhausted. Enemas, suppositiories…nothing helps. Then, the hospice nurse shows up and does what they’re trained: trying to dislodge it with their finger. You know the pain chart, 1 through 10? Well, this is 11! About this time, your bowels begin to block your urinary tract, which can be very dangerous. This is where the E/R comes in. They put the urinary cath in, which later is very likely to cause an infection. Next is the exam, abdominal x-rays, and wait. The first time, they sent me home with a gallon of the Go Lytely, the stuff you have to drink to clean you out the night before a colonoscopy. I was eventually able to pass brick #1 at home, but not without more pain. The next time after everything else, I was able to pass it in an E/R bedpan after another enema, again, very painfully.

I’m on liquid stool softener, senna, and I get warmed prune juice in my feeding tube with my meds each morning and night, but without the water, they’re useless. I’ve had just a little experience with bowel incontinence, so I’ve had to wear depends a few times. Thankfully, that was brought under control with the right amount of fiber. I’m so thankful that the only incontinence I’m living with now is emotional. Just another day…