November, 2020 One of the mad rushes you’ll need to deal with shortly after your diagnosis is the impact the disease will have on your humble abode. Where you had before scoured the world wide web for nsfw tweets, cartoons, and worse, you are now searching for ramps and grab bars. You are also beingContinue reading “Trashing Our Crib”
Tag Archives: ALS
Origin Story 2
December, 2020 Before we get started a special thanks to all of you who shared relentlessly. Last Monday the site was viewed by more than a hundred visitors with almost seven hundred page views. That’s a whole lot of procrastination. Now back to our regularly scheduled program. As you read on keep in mind thatContinue reading “Origin Story 2”
Origin Story
November, 2020 My friend Carolyn the Poet suggested that I describe the diagnostic journey to ALS Land. Because hopefully precious few of you will have any experience with the long march of uncovering neuronal degeneration I agreed that now was as good a time as any to share this part of the trip with you.Continue reading “Origin Story”
Guide to Grunts
November, 2020 As I’ve mentioned, this no talking thing really has me embracing the suck. Although my eye tracker device really helps when it’s working, sometimes the sunlight in the room fouls up the tracking laser or you don’t want to bother with the device or it isn’t installed or you just want to screamContinue reading “Guide to Grunts”
Taking Your Breath Away
October, 2020 To be completely up front with you guys, my breathing numbers just suck where they shouldn’t and and don’t where they should. In July, they were running a bit south of 50% and now they’re running south of 20%. Clearly, my good looks aren’t the only thing that is going south. It’s noContinue reading “Taking Your Breath Away”
Read THIS 2
November, 2020 Before I bore you once again with my reading list, I thought it would be a good idea to reflect on how far we’ve come on behalf of pALS. The following is from Julie Scurich who is a Case Manager with the Golden West Chapter of the ALS Association: “I loved your latestContinue reading “Read THIS 2”
Battle of the Hoyer 2
October, 2020 Loyal readers are to be excused if they felt that they were left hanging at the end of the last segment of the great Hoyer lift battle. To know a fresh Hoyer was in the house without sharing a joy ride was either cheap suspense or a way to absolve you from havingContinue reading “Battle of the Hoyer 2”
Battle of the Hoyer 1
October, 2020 For reasons that are beyond me, you are still reading my meandering screes. My fervent hope is that you will forever be cured of any desire toward this blog after you waste your time with this next segment. For this is the strange and terrible saga of the worst item of durable medicalContinue reading “Battle of the Hoyer 1”
Cannabis
October, 2020 There’s a huge amount of interest in cannabis in the ALS community over its use as a therapy. I started to investigate because I had no prior experience with this particular substance. What’s with all the gagging and snickering out there!? OK maybe I got a contact high at a Grateful Dead show.Continue reading “Cannabis”
How to Sound Like a Stoned Robot
September, 2020 A friend recently asked me whether I have a device like that used by the late physicist Stephen Hawking that allows me to speak. Not only do I have such a device, but mine uses my own voice. Well, sort of. Assuming I sound like a stoned robot. During my first consult withContinue reading “How to Sound Like a Stoned Robot”
Embrace The Suck 