» 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]

 
» On 9/01/2025 12:05:00 AM Mountain Standard Time, Alan wrote:
The Eyes Have It. 

Perfection. The parents want it. The teacher wants it. But the kid's a screwup. Trip to the eye doc. Read the top line. Cover your left eye. Cover your right eye. Which looks better? One or two? Here's your prescription. They're not "Four Eyes," they're glasses. You look like a Brainiac. OK, he'll try to be that, just to spite the jerks. Later, the specs are a pain in the butt. So... radial keratotomy. Scratch the eyeball at ten, two and four with a sharpened paperclip. Olden Days, before Lasik. Removed restriction from the drivers license. Perfection. Much later, cataracts. Get the "Cadillac of implants": three focal planes. Pirate patches. Arrgh. Perfection. Afterwards, seeing double. Droopy eye. Third nerve palsy? Slurring. TIAs, mini-strokes? MRI, MRA, CT, blood, urine, EEG, EKG, X-rays, cerebral angiogram (roto-rooter, up through the crotch). Allopath, osteopath, homeopath, acupuncturist, hypnotherapist, neurologist, neurosurgeon. Double vision, depth perception, peripheral vision, balance: staggering, lurching and stumbling like a drunken sailor. A friend says the "Special K" pill at a rave cleared up his double sight. Got prescription for ketamine therapy. Aimed for the K-hole. Nothing. Hands cold, always exhausted, face doesn't work. Exacerbations are terrifying. Finally, after three years, a neuro reluctantly gives the Myasthenia Gravis diagnosis. Expensive treatments. They never tell you retirement will cost this much, when the shysters are stealing from your paycheck. IRA, my foot. And Medicare ain't free, especially when you get past the "A" part of the alphabet soup. Is it worth investing even more money to keep fixing up this worn-out wreck of a body? But then "Bette Davis Eyes" pops up on the ol' YouTube, and he can't help himself... with sincere apologies to Kim Carnes [1981 video below]:

Her hair is greasy gold
Her lips, a snarled surprise
Her hands are always cold
She's got Myasthenia eyes
She'll turn her gaze upon you
And she'll see you like twice
She's pure as Jersey snow
She got Myasthenia eyes
And she'll squeeze you, she'll appease you
All the better just to freeze you
She's atrocious and she knows just what it
Takes for diagnosis
She got a neuro doc's weary sighs, she's got Myasthenia eyes
She staggered to your home
'Coz of her droopy lids
She hogged the La-Z-Boy
She got Myasthenia eyes
She slurred her pickup patter
Nudged you like you were lice
Until her snores began
She got Myasthenia eyes
She exposed you, when she froze you
Exacerbated the crumbs she throws you
She's ferocious and she knows just what it
Takes to spark prognosis
All the boys think she's so fly, she's got Myasthenia eyes

Other versions of Bette Davis Eyes:
1974 Jackie DeShannon (1982 Grammy, 24th)
2000 Gwyneth Paltrow
2011 Taylor Swift
2022 Where The Waters Meet (Megan O'Neill & Paul Kenny)
2024 Ethel Cain
2025 JoJo Siwa

Myasthenia Gravis Playlist:
1978 Double Vision Foreigner
1980 Crosseyed And Painless Talking Heads
1989 Hold Your Head Up Uriah Heep
1958 (Hang Down Your Head) Tom Dooley The Kingston Trio
1963 Walk Like A Man Frankie Valli & The Four Seasons

2025Aug12: tennis legend Monica Seles...

2025Oct9: Oh geez, they really butchered it...

Labels: me, mg

 
» On 9/01/2025 12:01:00 AM Mountain Standard Time, Alan wrote:
Invisible Incurable Disease. 

Myasthenia Gravis (MG) is a rare autoimmune neuromuscular disorder that causes weakness in the voluntary muscles, often impacting those I rely on for everyday activities, like breathing, blinking, swallowing, and moving my arms and legs. In MG, antibodies mistakenly attack the receptors on muscles, preventing essential signals from reaching them and causing significant fatigue and muscle weakness. MG is an incurable illness that limits physical strength in unpredictable ways, but many symptoms are not always visible.

Perhaps the most destructive thing we can ever be told when battling a chronic illness are these simple words; "we have medicine for this and most people lead a nearly normal life, don't worry!"

They are words a patient never forgets, forever etched deeply into the subconscious grooves of their mind and heart, words that will negatively shape their newly forming identities, relationships and so much more.

You see, there is a natural instinct as a human being to protect and insulate against brokenness, to fashion a safety net, spun against our own fragility, ensuring our protection from the rejection and slander of others. There is a deeply penetrating need to hide away our flaws from those around us.

Just as this instinct thrives in our daily subconscious in all other matters, it reaches new heights for those with chronic illness.

During the formative first few months that our identities as patients are being shaped, the reverberating echo from doctors that we can, and indeed should, be able to achieve normalcy as prescribed by those who are not impacted by illness and when we cannot, there is an innate sense of shame.
--Rebekah @ facebook.com/share/p/1GJ1b8q9R4

The neurologist treating my MG has administered a Myasthenia Gravis assessment. I scored 10 on the MG-ADL, which he said was not great. He has also prescribed medicines that have horrific side effects, like unpredictable explosive diarrhea. But I was already wearing Depends for urinary tract issues after a botched prostate operation, so now the diapers do double duty, covering all bases. Lucky me. 😉
#acbmg on facebook

Labels: mg

 
» On 8/16/2025 06:33:00 AM Mountain Standard Time, Alan wrote:
Tap Anywhere© To Silence Alarm? 

When your phone alarm goes off, do you struggle to find the button that stops it? Tap Anywhere© is a feature that could be incorporated on any platform - iOS, Android or other - to make it easy for groggy users to silence their alarms. It allows you to turn off an alarm by simply tapping any part of the phone's touchscreen.

Advantages:
Convenience - easy to silence or snooze an alarm, especially when half-asleep.
Accessibility - helpful for users with visual impairments who may find it difficult to locate small buttons on a screen.

UPDATED THREADS: Apple (nuked: "not constructive") ~ Android (nuked: "irrelevant") ~ FB (shake to silence) ~ IG ~ LI
©2025 Alan C. Baird

Labels: ta