» On 10/25/2025 10:00:00 AM Mountain Standard Time, Alan wrote:
Monetize Your Illness! 

I just earned $100 by chatting for 10 minutes on the phone, signing two documents on DocuSign.com, and hosting a short visit by a phlebotomist for a minor blood draw. Score!

"There's gold in them thar ills." 😉 (Mine is myasthenia gravis.)

https://RarePatientVoice.com/rp/AlanBaird
https://app.ZoomRx.com
https://CenterWatch.com
https://ResearchMatch.org
https://TrialsToday.org
https://ClinicalTrials.gov
https://ClinicalStudies.info.nih.gov

A well-to-do friend replied: "I’m 86 and have no illnesses. I’ll die penniless. 😉"

UPDATE: Received another $120 cash for a 60-minute Zoom call. Plus a $10 Amazon gift card. 🍾

Labels: mg

 
» On 10/24/2025 06:20:00 AM Mountain Standard Time, Alan wrote:
Entry-Level Position As A Guinea Pig In A Myasthenia Gravis Clinical Trial. 

September 5 - The Straight Poop: I've been signing up for Myasthenia Gravis clinical trials and studies. I naturally want to get involved with the development of new treatments for MG, but I'm also not averse to earning a few extra bucks on the side. MG is a chronic neuromuscular autoimmune disease that's rare enough (0.003%) to attract the attention of major-league researchers and drug companies (note tennis great Monica Seles' recent MG endorsement deal with a well-known Dutch immunology firm), and some of them are even willing to pay peons like me. So yesterday I was in the middle of a half-hour screening call with a big-time research group when my medication began to demand some *immediate* attention. You see, my neurologist has written a prescription for Mestinon, which features a nasty little side effect: uncontrollable explosive diarrhea. So in mid-conversation, I tiptoed gingerly into the bathroom, dropped trou, and plunked my bare butt onto the crapper. Luckily, nothing happened immediately, so I wasn't forced into the awkward position of explaining any strange noises to the nice lady on the other end of the phone line. 😉

On October 8, I drove 23 miles to the Bob Bové Neuroscience Institute at HonorHealth in Scottsdale, to go through the heavy-duty screening process for their Myasthenia Gravis clinical trial. I had already completed the blizzard of release forms via email and talked on the phone for about a half-hour with the research supervisor. So far, so good. But the screening appointment was a several-hour interview marathon, with a blood and urine test, an EKG, and several strength and breathing tests. Plus little quizzes on their iPad and two painful shots for exotic types of flu. (The experimental medicine apparently leaves me open to several nasty bugs, so they want to protect me with vaccines.) It was exhausting. My MG was not accustomed to so much stress/effort, and I could feel the life draining out of my body. But I was very much aware that she was evaluating me at every step, looking for any excuse to exclude me, to save them some time and effort. So I tried to keep up the energy in the room by doing patter. Near the 150-minute mark, she finally said, "OK, you've got a number. You're Patient Number 5." I was elated! I still needed approval from the drug company sponsor in Switzerland, but I had survived the worst of the screening. So I wisecracked, "I am not a number, I am a free man!" It's a line from The Prisoner, a cult British TV series from the 60s. But she is in her mid-40s, so she's not old enough to understand the reference, and I had to explain it. However, if the Swiss overlords accept me into their study, you all know me well enough to foresee that I will be using that line as a callback joke. EVERY D*MN TIME I RETURN FOR MY MONTHLY PILLS DURING THE NEXT TWO-AND-A-HALF YEARS! 😉

The Prisoner ("Number 6"): https://www.youtube.com/watch?v=nW-bFGzNMXw

* This is a double-blind phase-3 clinical trial. For the first 6 months, I might be getting a placebo. But then, all of the experiment's participants get 2 years' worth of pills (dispensed monthly) that will treat the myasthenia gravis in our bodies.

* The drug being tested is currently used to treat other illnesses, but the Swiss overlords want to find out if it can also be used "off-label" to treat MG, by "acting proximally in the alternative pathway of the complement cascade." No, I don't understand that, either. But everybody is really excited about the possibilities, and they're spending a lot of money to hire 146 "guinea pigs" in 87 locations around the world.

* "Off-label" use refers to a medication that has been approved by the U.S. Food and Drug Administration (FDA) for a purpose or in a manner that differs from the FDA-approved labeling. It's a common and legal practice.

* According to Google, the Wholesale Acquisition Cost of this drug is around $566,500 per year as of early 2025. Yowza. You know how your local smack dealer says, "The first one's free"? I suspect this may be a new way for the drug company to drum up repeat business: "Hook 'em for two years, and you got 'em for life." But the joke's on them. I'm old, and statistically unlikely to last very long after the 24 months. 😉

* On October 23, the Swiss overlords approved Number 5. Stand back. 😉

Labels: mg

 
» On 10/16/2025 08:30:00 PM Mountain Standard Time, Alan wrote:
The Diplomat, season 3. 

s3e3 @14:30 The Riderless Horse by Elie Attie
https://www.netflix.com/title/81772105
KATE (Keri Russell): Can we or can we not sleep in the same bed and just keep our hands to ourselves?
HAL (Rufus Sewell): Why are you acting like I'm a sеx offender?
KATE: I'm talking about both of us, or me, or I know myself. Touching leads to more touching. And then, if this is how it starts, it can get out of control.
HAL: Are you saying you're worried you're not gonna be able to control yourself if you touch my back?
KATE: Yeah.
HAL: Then why the fսck are we splitting up?
KATE: Because you're more than a pogo stick, Hal. You are a full-time job. Two full-time jobs.
HAL: I'm gonna roll up a towel and make a line down the center.
KATE: You know what, you're being a real shit.
HAL: I am trying to make this work, Katherine. I really am. But I... I fell asleep with your left boob in my hand for the better part of ten years. Mistakes may happen.

s3e4 @40:40 Arden by Jessica Brickman
https://www.netflix.com/title/81772106
AUSTIN (David Gyasi): You were trying to leave.
KATE: No, I'm trying to get you to take your shirt off.
AUSTIN: Uh, what is this?!
KATE: I know, it's medieval.
AUSTIN: It's fucking impenetrable!
KATE: You know what? Skip it. I barely have boobs.

s3e8 @46:12 Schrodinger's Wife by Debora Cahn
https://www.netflix.com/title/81772110
HAL: Shave and a haircut...
KATE: ...two bits.
HAL: I like a gal with...
KATE: ...small tits.

 
» On 10/01/2025 12:01:00 AM Mountain Standard Time, Alan wrote:
The 119.53-Second Pour. 

During my first visit to a Dublin pub, I couldn't understand why the bartender poured only a partial pint of draft Guinness and didn't hand it over to me right away. 😉 This scene from House Of Guinness ep3 (@46:00) provides an explanation:

EDWARD GUINNESS (played by Louis Partridge, indicating two bottles of Guinness): I'll pour.
ELLEN COCHRANE (Fenian activist, played by Niamh McCormack): I don't drink in the daytime.
EDWARD: These are not for drinking. They are purely for the purpose of illustration.
ELLEN: What illustration?
EDWARD: You see, there is a particular technique when it comes to pouring Guinness. When you start to pour, the beer, quite rightly, is very excited to be free. And it fizzes in the glass. So while the first glass settles and gets used to the situation, you start to pour the next. And then you wait for the Porter to calm down. I call it the Guinness minute.
ELLEN: I was told that you wanted to meet me. Can you get to the point?
EDWARD: This is my point. These two half-poured glasses of Guinness represent the state of Ireland. At this moment, excited by your dream of independence, but in need of a little time... to reflect.
ELLEN: And you reduce our struggles to beer?
EDWARD: It's what I know, Miss Cochrane. I also know... that when you complete the pour, to fill the glass, it is important that you do it slowly, carefully... Evenly. And, as with your political struggle, you will only be successful if you keep... your... head.
ELLEN: I'm still not drinking what you poured me, Mr. Guinness.
EDWARD: Miss Cochrane, what I am offering is that we go on a journey as honorable people. And we go on the journey together.
ELLEN: A long, slow stroll, arm in arm with the capitalists and the unionists? The situation is simple. (ironic) When your brother is elected, he will use all that famous Guinness power and influence to make the English parliament see the wisdom of Irish independence.
EDWARD: We can help him by showing him that the Fenians are not wild bandits. I wanted to meet you here, in a public place, to make a statement that all of Dublin society can understand. Also... my brother is getting married. And we are inviting carefully selected Dubliners who represent different parts of society.
ELLEN: I'm invited to a Guinness wedding?
EDWARD: I know you are not married, but you can bring your brother. I'm keen to meet him as well.
ELLEN: (laughs, then exhales sharply) I have certain rules which I mostly abide by. Sometimes, I break my rules. (she raises her glass and drinks)
[119.53] [music]