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”
Category Archives: Uncategorized
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”
Island Hopping
September, 2021 This is a departure from ALS Land to the land of you’ve got to be kidding. Whatever you do, don’t try this at home. Two of the defining thoroughfares in the South Bay are highways 280 and 85. They come together in a giant expanse of asphalt, concrete bridges and overpasses surrounding largeContinue reading “Island Hopping”
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”
Who’s Waldo
August, 2021 Decades before a cartoon hiker became a search object in books of crowds, I was crowned with an unusual, but ultimately useful nickname. One look at our email address, whaldeaux23@yahoo.com, shows how useful this nickname can be. Now don’t get me wrong. I love Bob as a nickname. It has only three letters,Continue reading “Who’s Waldo”
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”
Play the Gig
July, 2021 Loyal readers of my weekly scree know of, and are bored sick with, my infatuation with live music. For that reason, I’ve decided to try your patience yet again and subject you to another meandering reminiscence of my performing past. This segment introduces you to a stage eye view of getting to andContinue reading “Play the Gig”
Tools of the Trade Two
August, 2021 I closed off the last blog on this subject by promising a discussion of my feeding tube. If that doesn’t scare you away then I’m simply out of ideas. I’ve discussed my adventures with the feeding tube in my blogs with the words Stanford Health in their titles. The business end of theContinue reading “Tools of the Trade Two”
Embrace The Suck 