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”
Tag Archives: ALS
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”
Check In
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”
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”
Embrace The Suck 