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”
Category Archives: Uncategorized
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”
Read THIS
October, 2020 A good colleague of mine, who I will call Jack because that’s his name, asked me what I’ve been reading. I was quite flattered by his request because he actually assumed I could read. Because I haven’t been able to physically hold a book for the better part of a year, his questionContinue reading “Read THIS”
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”
Not For Amateurs Part Last
September, 2020 You have been so good to me and tolerating my rants abour the need for ALS case managers that I’ll only ask one more indulgence. At least not until some new transgression sets me off. At the risk of discussing issues I know little about (I know that never stopped me before) letContinue reading “Not For Amateurs Part Last”
LazyBoy on Wheels
September, 2020 Because us pALS have fewer and fewer motor neurons, we have to get specialized equipment to compensate for our degenerating electrical system. After the cane and walker were outliving their usefullness as permanent mobility aids, it was time to trade up. Enter the electric wheelchair, or, as I like to call it, theContinue reading “LazyBoy on Wheels”
Not For Amateurs Part 2
August, 2020 As I wrote this the great g tube debacle just kept getting worse. Stanford Health Neuromuscular tells us to go to the Interventional Radiology Clinic who tells us we need the procedures group who tells us to go to the Clinic. Both groups tell us they can’t do anything without a referral fromContinue reading “Not For Amateurs Part 2”
Centaur
September, 2020 The New York Times recently published an article (https://www.nytimes.com/2020/09/02/health/als-icebucket-treatment.html) on AMX0035 and the Centaur study in which I participated. Because you have nothing better to do, I decided to bore you with my involvement in the trial. When I was first diagnosed, I dove into everything I could find about potential therapies. NotwithstandingContinue reading “Centaur”
gratitude
August, 2020 As I write this NorCal has gone biblical and not in a good way. Surrounded by wildfire with an overlay of pandemic is not my idea of the dog days of summer. And it’s hot and the air outside is unhealthy. And there’s this ALS thing. It’s times like these that the mindfulnessContinue reading “gratitude”
ALS Management: Not For Amateurs
August, 2020 pALS (person with ALS for you newbies) are constantly inundated with challenges. Some come from the ALS disease itself. Many, however, come from managing treatment through my ALS clinic, the medical industrial complex, and the world at large. At the center of attempting to manage this disaster are the ones with the leastContinue reading “ALS Management: Not For Amateurs”
Embrace The Suck 