October, 2021 Because it’s coming up on Thanksgiving, I thought it was high time to list some more things about which I am thankful. Long time readers of this blog will remember my post “gratitude”where I expressed my gratitude for, among other things, my pee bottle. I fear this post will rise to the sameContinue reading “Gratitude Too”
Tag Archives: Lou Gehrig's Disease
Booger
October, 2021 This one’s kind of gross, so if you have any aversion to dried snot projectiles, you should stop reading now. For those of you without such an aversion, you ought to be ashamed of yourselves. On the other hand, who am I to judge. I write this stuff. One of the worst insultsContinue reading “Booger”
The ALS Care Team Ecosystem 2
October, 2021 When we last left this subject, you were nodding off to my description of the characters that make up Team Waldo, my care ecosystem. You probably completely crashed when I started talking about insurance companies. So you probably missed the part where I promised one more installment about the Team Waldo care ecosystemContinue reading “The ALS Care Team Ecosystem 2”
Rant
September, 2021 Before I drag you down this week’s harangue, a public service announcement for those that want to go the extra mile or two to battle ALS. On October 23rd the ALS Association Golden West Chapter is holding its annual Walk to Defeat ALS. Because I have a hard time cutting and pasting links,Continue reading “Rant”
The ALS Care Team Ecosystem
October, 2021 This Monday, October 11, will be the third anniversary of my diagnosis. I was thinking of throwing a party to celebrate, but because it’s the start of the work week no one would attend. So, instead I decided to blog about the care ecosystem into which you’re thrown once diagnosed with this wretchedContinue reading “The ALS Care Team Ecosystem”
Upstream
September, 2021 One of the things that keeps me going is geeking out on the new research going on to battle ALS. Even though I’m only able to understand every third word, I can usually make out enough to learn about the really cool advances that are occurring. Every so often something comes along thatContinue reading “Upstream”
Trails
September, 2021 They don’t let me out much anymore. I can’t really blame them what with my rag doll head drop and inability to even sit upright. My outdoor travel now is limited to my perch on the veranda outside the music room. During the early stages of this wretched disease, I was able toContinue reading “Trails”
Tools of the Trade Three
August, 2021 In my blogs about specialized equipment for us pALS, I have saved the best for last. In the early stages of my disease progression I could still transfer from walker to seat and even drive. As it became clear that the LazyBoy on Wheels would soon become my permanent friend, it also becameContinue reading “Tools of the Trade Three”
Battery Backup
August, 2021 ALS robs you of the breath of life, so us pALS have to rely on respirators to help us breathe. Respirators, which are first cousins to, if not the same as, ventilators and CPAP machines, require electric power to function. Power, however, isn’t a foregone conclusion. There’s ferocious storms that can down powerContinue reading “Battery Backup”
ALS Management – Ending Isolation
July, 2021 Astute readers will recall my earlier harrangues over the lack of professional case management in dealing with this wretched disease. Thankfully help on the way came courtesy the ALS Association Golden West Chapter which has case managers available to us pALS. Unbeknownst to me, my initial need for a case manager coincided withContinue reading “ALS Management – Ending Isolation”
Embrace The Suck 