“Mama Told Me Not to Come”

April 2, 2026

Ever notice how things seem to come in “threes?” 

Three Blind Mice? Three Little Pigs?  The Three Musketeers? The Three Stooges? Peter, Paul & Mary? Crosby, Stills and Nash? (Okay, Neil Young might have something to say about that one; you’re right.) The Bee Gees (that is, before Andy)? 

Threesomes? Never appealed to me, but I’ll admit you’ve got your good ones…

Your bad ones…

And your…hard to explain…ones

Scientists will tell you the belief that things come in threes is something called apophenia.  That’s our human tendency to perceive meaningful patterns in random events as a means to cope with fear and uncertainty.

I don’t know about that. I’m pretty certain there’s something to it.

Take this trio

No, that’s not Three Dog Night.  But good guess.

These fun boys are Jean Martin Charcot, Pierre Marie, and Howard Henry Tooth. Two Frogs and a Brit. Back in 1886 they lent their names to a genetic disease that was all the rage. They called it Charcot-Marie-Tooth or CMT. 

Catchy? No. Imaginative? No. Descriptive? No.  

CMT has nothing to do with your teeth. “CMT” is a nervous system disorder in which some lucky contestants, gradually over time, lose feeling, first in their feet, then their ankles and then their calves. It’s genetic, gradually gets worse and there are no drugs to treat it.

You can spot CMT club members by their club feet. Look for high arches and “hammer toes.” Here’s a good example. 

See the arches? The balls of the feet. The heels. We’re talking precious little surface area to serve as the foundation for an overweight high-rise. This, combined with decreasing sensation, rules out the cha-cha and makes staying upright a tad dicey.

Now normally you would think a loss of sensation might come in handy. (Footsy?). But it turns out that’s bad. Pain is apparently your friend. Your body’s way of signaling “Don’t bend your ankle that way, bozo.” If you don’t have pain signaling boundaries, you hurt yourself without knowing it. Not good.

So, there’s that. I’ve got that little co-morbidity going for me.

Great. 

Let’s see… No. 1: Parkinson’s. No. 2: Charcot-Marie-Tooth…

What other nervous system malfunction have you got for our contestant, God? I’m guessing there’s another acronym up that celestial sleeve, or we wouldn’t be talking threesomes.

[God’s thunderous voice.] “That’s right, Johnnie.” 

“Just to keep this poor wretched nonbeliever miserable, we’ve thrown in a bonus nervous system torment. Some call it WED (Willis-Ekbom); some call it RLS (Restless Leg Syndrome) For this clown, we thought sleep deprivation might be just the ticket, so we’ve added an old favorite, PLMD or Periodic Leg Movement Disorder.”

Not familiar? Here’s the skinny.

Every day, starting typically around 4:00 in the afternoon, one or both of my legs jerk. It’s not painful. It’s not the “creepy/crawly” sensation often associated with RLS. It’s not a muscle spasm. Not a cramp. (Although those are often in the mix.)

How to describe it?

You remember those bathtub motorboats we made in Cub Scouts. The ones propelled with a rubber band.

It’s like someone has turned my motorboat paddle end-over-end, tightening the nerves in my legs, tighter and tighter until they can’t twist further. When the tension is too much, they jerk. It looks and feels like a reflex.  You know the one where they hit you with the little triangular hammer and your lower leg kicks. This “build and burst/burst and build” loop happens every 15 to 30 seconds. You can almost set your watch to it.

Sometimes it’s minor. Sometimes it is explosive. If I am standing on the affected leg when it’s bad, I will collapse to the floor.

The insidious thing about my PLMD friend is …it knows. 

I mean…she…knows.

She knows when I’m tired. She knows when I need a nap. She knows when I climb into bed at night.   At the very moment I can’t keep my eyes open, she says,

“NOT SO FAST, JACKSON. GET UP AND WALK.”

Only two things can stop her. Standing up and walking. 

Or drugs.

“That’s easy,” you say. “Take the friggin drugs, Rob.”

I do.  Believe you me, I’m no hero. I always say, “Better living through chemistry!”

So…what’s the problem?

[Whispering] She turns on you.

“Who turns on you, Rob?”

“The PLMD drug.”

The go-to drug used for PLMD is Requip. It’s what’s known as a dopaminergic drug. Works dandy for a while, but with prolonged use, something called “augmentation” occurs. 

Augmentation is bad.

The drug actually begins to make things worse. The symptoms start earlier in the day and grow more severe. The more pills you take, the worse the PLMD gets. And…just for laughs…  the worse the PD tremors get.

Okay, you say, what’s the big whoop? Deploy the chutes. All engines stop. Bring her about, captain. Stop the damn drug and find another one.

I would, but…

But what, Rob? 

“[Whispering]…She  knows.”

“Who knows, Rob?”

“The drug knows”

“Knows what Rob?”

“You’re trying to leave her.”

Requip is like Glenn Close prepping the bunny burn.  She knows when you’re trying to dump her.

Doctors say going off Requip…cold turkey…is worse than withdrawal from heroin. We’re talking sleeplessness, sweating, nausea, intense abdominal pain. And the leg thrashing and Parkinson’s tremors go into overdrive. Sometimes doctors resort to Methadone, oxycodone, tramadol or clonazepam or some really heavy opiates to get you through it. 

The trick is to taper. Slowly cut back. Slip out the back Jack before Glenn Close knows you’re making new plans, Stan.

Back in the day, I took as much as 4 mg of Requip a day. Now I’m down to 1.5. Next step 1.0, then a half, and then I’m free.

“Free at last, free at last, thank God Almighty I’m free at last.”

Well…not quite.

You remember the three pebbles? 

The tests you must pass before you get the green light for Focused Ultrasound or Deep Brain Stimulation? 

Right?

The first was the Psyche Test. 

Check.

The second is what the neuros blithely call “an off-med examination.” Basically, the docs want you to come in having not taken your meds so they can size you up with and without your meds. Normally, this would mean a night without my Parky med, Sinemet. Big deal, so I have tremors all night. No fun, but no biggie.

But… a night without Requip?

Gulp.

Which brings me kicking and screaming to February 23, 2026. The Night of the Living Dead. The Night They Put Ol’ Robbo Down. The longest twelve hours of my life.

Quick side note before I continue. I’ve not experienced childbirth. I’ve seen two of them up-close-and-personal and could barely deliver the ice chips without feinting. So, I hear many of you mothers out there saying, “Welcome to the Big Leagues, Berto.” 

I get it. Fair point. I admit it: Put me down for a whining wuss. I don’t blame you moms if you’re not moved by my story. I suspect my night from hell was child’s play (pardon the expression) compared to what you have endured.

But…

But…

Can I just say… 

IT WAS AWFUL!!!

From 7:30 p.m to 7:30 a.m. I stood, then walked a few paces, then stood, then walked. Clutching the edge of the countertop, doubled over in gut pain hovering somewhere between food poisoning and the bends.

Think…one of those inflatable tube men you see at auto dealerships, but without the smile. That was me.

Legs jerking. Hands trembling. Trying desperately to remember Lamaze class and the shallow breathing technique I was taught to model. 

Time stood still. Accent on the “stood.” Not so much on the “still.”

I think I watched every minute…all 720 of them… pass on my phone. 11:25…11:26…11:27. Every passing minute was a godsend. Every pending minute agony. 

There’s a reason sleep deprivation is a violation of the Geneva Convention. It’s torture. Amnesty International, the United Nations, they all say forcing a person to go with less than 6 hours of continuous sleep for more than three days is a human rights violation.

Hell, I average 4.5 hours on a good night. The night from hell was zip. Nada. The big goose egg.

Poor Cathy awoke at 7:00 to find a shell of a man cowering in the corner of the family room. Like when Scout saw Boo Radley behind the door at the end of To Kill a Mockingbird.

Add to that the final 40-minute ride from Petaluma to Terra Linda, during which there was no way to stand-up, no way to walk it off, no way to stop the torture, and …well…

Let me put it this way.

I’ve been tired and hurting before. I’ve completed four solo double-century bike rides…that’s 200 miles, 17 hours in the saddle, 5:00 a.m. to 10:00 pm. I have a pretty high threshold for fatigue and agony. 

At least I used to. 

Now? 

I just don’t know.

I’m tired. I’m seeing things, not in double, but in triple. And I can’t close my eyes to rest.

Want some whiskey in your water?
Sugar in your tea?
What's all these crazy questions they're asking me?
This is the craziest party there could ever be
Don't turn on the lights 'cause I don't want to see.
Mama told me not to come,
Mama told me not to come,
That ain't the way to have fun, No.