August, 2020 It’s been so gratifying to see the response to this blog. A special thanks to all who have subscribed. Both of you. What has been even better are the comments and private emails catching up on what you and our mutual friends are up to. I should have gotten diseased sooner. Because youContinue reading “Check In”
Category Archives: Uncategorized
Eye See What You Are Saying Part 2
July, 2020 Thanks to funding from the Golden West Chapter of the ALS Association and the efforts of Amy Roman, I was able to participate in a remote system evaluation trial allowing me to test drive a number of assistive communication units. Through the trial I chose a suitable eye tracker device. I can nowContinue reading “Eye See What You Are Saying Part 2”
Eye See What You Are Saying
May, 2020 ALS has been described as being stuck in the middle seat on a never ending flight. You are unable to move or speak, and God help you if you need to use the bathroom. The current loss de jeur to the bulbar region motor neurons means I can’t talk. This no talking thingContinue reading “Eye See What You Are Saying”
The Stanford Health Resort
June, 2020 Because folks have asked, here is a report of our latest sojurn at the Stanford Health Resort. Arrived Thursday morning, early for our appointment, for a feeding tube conversion. Everyone assures me it is an easy, quick, in the exam room, procedure. Conversion replaces the tube hanging from my stomach with a littleContinue reading “The Stanford Health Resort”
Talking to Someone Who Can’t
March, 2020 ALS robbed me of my voice. Those glib comebacks and learned reparte that drew people to my witty intelligence have been replaced by grunts corresponding to bodily functions that thankfully only my caregiver can understand. For some reason, however, my friends and family still want to engage with me. For them, here’s someContinue reading “Talking to Someone Who Can’t”
The Stanford Health Goat Rodeo
March, 2020My motor neurons are following my general personality and degenerating away. Big impacts are occurring in the bulbar region, so named for the bulb of motor neurons at the base of your skull where the join up with your spinal cord.For now this means, among other dysfunctions, I can’t curl my tongue, chew orContinue reading “The Stanford Health Goat Rodeo”
My ALS
February, 2020 Amyotrophic Lateral Sclerosis (say that fast ten times) is a degeneration of the motor neurons (MNs). These neurons are part of the transmission system of impulses from the brain to muscles controlling voluntary movement. ALS can destroy your ability to move anything, talk, type or, ultimately, breathe. It’s impact varies from person toContinue reading “My ALS”
Embrace The Suck 