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. This is not just my story of life with ALS; it could be yours in the blink of an eye…or the twitch of a muscle.

What happened to days 11 through 14? Well, I’ve been busy just living, enjoying time with Cindy and Maura, don’t want to miss too much opportunity there. Maura is so mature for 16, but in other ways so very much a teenage girl, and I’m so fortunate, and blessed to have such a step-daughter! Just read her comments for a glimpse. Looking forward to getting to know Hillary just as well. So, I’ve decided to substitute quality (hopefully)  for quantity.

Should have a visit from the Permobile rep next week for a new chair assessment. I’ve gone from a Jazzy, basically a power base with car seat, to my Permobile Chairman Entra with the Corpus seating system. It has tilt, recline, elevate and raising footrests. I’ve had the old-style standard joystick, a mini joystick, and now use a foot control, pictured here. The mini-joystick became a necessity when the regular one started getting more difficult to manipulate. But it was so sensitive, it was easy to over-do it, so it only lasted until about the second time I pulled up to the desk; got too close, and it was sheared off. That was the end of that. The foot-controller is basically a joystick with a gas pedal mounted over it, a huge change, quite difficult to get used to, my walls will attest to that. Anyway, now that a new chair is on the horizon, I really can’t decide what drive controller would be best. I could probably still use a joystick if I had to, but for how long is anybody’s guess. Can’t go with sip and puff because most of us lose the ability to breathe on our own. Could go with a headrest switch array, but how long could I use it? Don’t much like the thought of being completely dependent on others to drive for me, but if it comes to that, the good Lord shall provide.

Good day for swimming here in NC, but I have the support group today. Also, I have a decision to make. I’ve been invited by the ALSA Catfish Chapter to appear with them before the state legislature next week, to try and get their annual budget reinstated to the current level. We’ll see…