ALS Bytes

Wrapping up the month of writing on a “day in the life”, I think one thing is pretty obvious: as long as I’m able, and at most every opportunity, I’ll continue to tear myself away from this laptop and enjoy the life I have left. It’s that simple. What was once a “day-trip”, with ALS becomes a major undertaking, resulting in days of recovery. But for me, the happiness is measured in bittersweet doses. Sweet is the opportunity to get out, into the garden, on the town, to the grocery store…anywhere. Bitter is with the having to watch my angel, Cindy, having to do literally everything to prepare for even the smallest outing. From my most basic needs, getting me up, getting me to my laptop, bringing my coffee, feeding me breakfast, shave, shower, brushing my teeth, preparing the meds for my tube, dressing me…the list is at times endless, and that’s just getting out the door. For VA hospital and clinic visits, add to it the packing up of my bipap machine, making sure we have my water, Ensure, meds, sunglasses, hat, cellphone…getting the picture?

Today was started with high hopes. Last week I got a new BiPAP machine, a Philips Respironics AVAPS (Average Volume Assured Pressure Support) from the VA. Better machine, designed for ALS patients, but because my initial IPAP/EPAP (inhale/exhale) settings (10/5) seemed a little low, we had to take it back to the VA to have the settings tweaked. We had prescriptions to take there from my eye exam Tuesday anyway, so off we went. After an hour and a half wait, we got the machine tweaked. Did I fail to mention how my powerchair was acting up because it does that on a full charge? Something about the use of the foot-controller with the old electronics. The chair hesitates, and goes slower, and stalls with an error code, requiring a reboot of the power. If we had to do that once we had to do it 25 times today, causing much frustration, missed elevators, my slamming into a wall in the eye clinic, and Cindy eventually having to manually push all 205 pounds of me, in my 325 pound chair, plus carrying my AVAPS and her bag. At one point she stopped, crying in exhaustion, frustration, (“I HATE THIS PLACE!’”). There just are no adequate words to describe having to sit there, helpless, seeing your wife go through that, and barely able to mutter “I’m sorry honey”. But she’d do it again…and again. After five hours, home at last, and the setting on the AVAPS were too high. Thank God we were able to get it resolved over the phone with the R/T, Mitch. Thank you Mitch.

I also wanted to write about our trip to the state legislature last week to meet with representatives about keeping the ALSA in the budget, but that’ll have to wait. I hope everyone has a great Memorial Day weekend, and let’s not forget those who are and have sacrificed for our freedoms…while we still have them.