New Treatment of Locomotor Ataxia by Suspension

In 1889, Scientific American (pay-walled) ran a cover story a possible new cure for people with ataxia: hang them up. 

Today, you can put together that cover from puzzle pieces (scroll down … way down). 

In the past one thousand, two hundred and twenty-three days, I’ve tried at least four dozen supplements, medications, exercises, and therapies, from Alpha-lipoic acid, balance exercises, and cognitive therapy, to thumb push-ups, yogic healing, and zirtek.

Don’t ask me about the thumb push-ups. I found them on a list of things to discuss with whatever specialist I was seeing next. I have no idea.

How many of them will sound just as ludicrous, 137 years from now, as hanging people from the ceiling to cure a neurological problem does today?

Violence against Women: Hate Crime or White Noise?

Melania told the media yesterday that Congress should hold a hearing with Epstein’s victims, of whom, she insists, she was not one.

The survivors were not impressed. Fifteen released a joint statement saying that they’ve already spoken, and it’s not their place to be called to testify again.

The right-wing chatterers were baffled that she put the issue back on the front page of the news. The president was just confused.

Violence against women is so pervasive that it’s often almost invisible. Treating Epstein as a monster helps to maintain the fiction that it’s anomalous.

From that perspective, Mrs. Trump’s press conference makes sense: point to Epstein to avoid pointing to everyone else. And it also makes Mr. Trump’s desperation to keep the files away from the public seem, well, weird.

Trump is on record as calling up Michael Reiter, then chief of the Palm Beach police department, to say “Thank goodness you’re stopping him [Epstein], everyone has known he’s been doing this.” 

But it seems completely out of character.

DoJ investigators believe that Epstein sexually assaulted more than a thousand girls and women during nearly five decades on the prowl. (Students at the Dalton School, where he taught physics and math in 1975 — though he hadn’t graduated from college — said his behavior with female students was “weird” and inappropriate.)

It’s a horrifying number. Epstein is a monster.

But let’s put it in context. The US government estimates that more than 63,000 children are raped or sexually assaulted every year, as well as seven million women and 2.5 million men. Lifetime totals: 60 million women and 20 million men (pdf; pages 8 and 15). 

The perpetrators? 99 percent male. 

Who are they? A non-trivial fraction of the male population.

A review of 78 surveys of more than 25,000 men found that on average, almost 30 percent admitted to having committed sexual violence, and 6.5 percent said they’d ever raped someone. 

Caveat: when 34 men were given a written survey and then interviewed, 100 percent of them turned out to have checked off no on a question about sexual coercion, but later said, well actually, yes. (The article: there are “a significant number of false negatives.”)

Which gets me back to Mr. Melania Knavs,* more commonly known as President Donald Trump.

Despite the reported phone call, Trump has repeatedly claimed he knows nothing about Epstein’s crimes. But he has also admitted to sexual coercion, claiming “women let you” if you’re rich and famous.

Here’s his conversation with Billy Bush, the host of Access Hollywood. It’s been quoted, parodied, and memed so many times it’s almost white noise at this point … but I’m quoting it again anyway.

Trump: You know, I’m automatically attracted to beautiful — I just start kissing them. It’s like a magnet. Just kiss. I don’t even wait. And when you’re a star, they let you do it. You can do anything.

Bush: Whatever you want.
Trump: Grab ’em by the pussy. You can do anything.

Asked about those comments, he doubled down: 

If you’re famous, rich or whatever, … if you’re a star … women let you. People who are rich, they tend to do well in a lot of different ways…. It’s been true approximately a million years.

It was true for a very long time that men, and especially wealthy men (by “people,” he means “men”) could rape (they used to call it “seduce”) their household staff with impunity. It remains true that teenage girls are assaulted by their coaches or offered good movie roles in exchange for sex. That some men force sex on their dates, with or without alcohol or roofies. 

Raping your spouse was legal in some states until 1993. (It was legal in all of them until 1975.) Loopholes remain: in several states, if she’s unconscious it doesn’t count as rape.

The data I quoted above about sexual violence? 

Trump ordered ordered it be removed from the US Government’s web sites.

It’s available again only because a judge ordered it restored after a lawsuit.

With a disclaimer:

The Trump Administration rejects gender ideology due to the harms and divisiveness it causes. This page does not reflect reality and therefore the Administration and this Department reject it.

Got that? Data about sexual violence is driven by gender ideology and isn’t real.

Back to the 2006 investigation. Palm Beach police talked to more than a dozen girls who said Epstein abused them and tried to file charges on multiple counts of sex with a minor. But Barry Krischer, the county prosecutor, didn’t believe any of it. Keep in mind, he’s the prosecutor, not a lawyer for the accused. But he thought the girls, as young as 14, were having illegal but consensual sex with Epstein because they wanted money for clothes. 

He didn’t bother actually talking to any of the girls, but he did call a grand jury — unprecedented in this kind of case. He assigned a prosecutor who called the victims prostitutes in front of the jurors, and told the girls testifying that *they* were guilty of crimes.

The jury came back with one count: solicitation of prostitution.

Chief Reiter took the case to the FBI. They investigated. When they brought the case to court in Miami, US District Attorney Alexander Acosta didn’t believe the girls either. He dragged his feet for a year, talking to Krischer and to Epstein’s lawyers, and then cut Epstein a deal — kept secret from the victims — before the feds had even finished their investigation.

Epstein served 13 months. Acosta’s plea deal allowed him to go home every day to work and gave him immunity from further prosecution.

The (mostly) men who remained in touch with him claim they knew nothing of his crimes or, more plausible but still creepy, as Noam Chomsky put it, he’d done time for his crime and had “a clean slate.”

But plenty of people knew about his behavior, and objected to it.

In 2008, Tina Brown, then-editor of Vanity Fair, was invited to a party at Epstein’s place; other guests included the former prince Andrew and Woody Allen. Her response: “What the hell is this — the Predator’s Ball?” 

In 2017, Trump nominated Acosta as Secretary of Labor. His treatment of Epstein came back into the news. Nevertheless, several labor unions endorsed him and the Senate confirmed him. 

Trump’s claims that he knew nothing of Epstein’s crimes sound sketchier and sketchier.

In 2018, Julie K. Brown tracked down the victims, interviewed them, and wrote a series of searing articles for the Miami Herald. The feds reopened the case and arrested Epstein again. Acosta had to resign, finally.

In 2019, Melinda French Gates filed for divorce. Besides the fact that Bill kept chasing female staff members, French Gates objected to Bill’s relationship with Epstein.

In 2020, Trump ran for re-election and lost. It was a pretty decisive defeat, in terms of both the electoral college and the popular vote. But Trump claimed his victory was stolen and encouraged his supporters to storm the capital while electoral votes were being counted.

From here, I’m going to jump over Biden’s entire presidency to Trump’s second term. On his first day back in office, he pardoned everyone convicted of crimes as a result of the January 6 riot, and ordered all pending cases to be dismissed. (Even Vance said this was a bad idea.)

A full dozen of them are back in jail or face charges of child sex crimes or violence towards women: rape, sexual assault, stalking, strangling, and assault.

A couple dozen more are accused or convicted of killing by DUI, building a bomb, death threats, home invasion, forgery, and other violent crimes.

Meanwhile, the media. What they’re not saying: people knew Epstein was repugnant, called his plane the Lolita Express, but still wrote him friendly emails, asked for advice about women, “liked the torture video,” wanted him to help their kid get into college, or find a job or a place to live.

What they are saying: the files, not people’s actions, are causing fall-out, repercussions, chaos. Somehow the files are the monster, and letting them out into the world is the problem.

How would we think differently about violence against women and girls if it were classified as hate crime? Would it make it more visible? Or will it be possible to think about it as hate crime, only when perpetrators and their friends learn to see it and when everyone learns to see women as fully human?

How Not To Get A Covid Vaccine

I read a few weeks ago that the CDC recommends two doses of a covid vaccines this winter for people at high risk of serious disease. So having been vaccinated in September, I asked my primary care provider if I should get a second dose.

Yes, good idea.

Can you write me a prescription?

You won’t need one, just go to the pharmacy.

Okey dokey. I went off to the pharmacy. 

There’s no one on staff who can give it to you right now, but you can make an appointment.

I was already so aggravated about the rumpus over the underfilled prescription that I walked away to calm down, and left my always supportive spouse to continue the conversation; she made dates for the next morning.

Next morning: a phone call.

We can’t give you the vaccine, it has to be at least six months after the previous dose.

The CDC: the minimum interval is two or three months, depending on the manufacturer. I have no idea which kind I had last time, but it’s been almost five months; I contact my doctor. She writes a script. I go back to the pharmacy.

How old are you?

62.

We can’t give you the vaccine, you have to be over 65.

I have a prescription from my doctor because I’m at higher risk.
You need to have a condition.
My doctor said she sent a prescription, did you get it? 

We have it. mYou need to have a reason. What condition do you have?
You need to know that?
Yes.*

There’s a line behind me now. She takes my deets, gives me a form to fill out, and goes off to run my insurance information.

It’s expired.
The policy I had expired, but I’ve had a new one since December. It’s on record. I’ve filled several prescriptions.
They’re saying it’s expired now.
…..
…..
Do you have a card?

I hand it over. She huddles with three or four other pharmacy employees. The line behind me is getting long. She comes back, hands me a printout.

Your insurance won’t cover it.

How much is it?

Over a hundred dollars, I think. I’ll go check.

…. 

$245.

I look at my very patient spouse, who has been waiting, patiently, behind me. The line is about ten deep by now. She nods. I get out my credit card. 

Administrative Burdens of Being Sick: Drugs

I sat down the other morning to fill my pill sorters for another month and discovered that the pharmacy only dispensed ten pills, instead of 30, for the prescription I’d filled the previous day.

I called them up and left a message. No reply.

I drove back to the pharmacy with the bottle. Did my doctor’s office make a mistake in the prescription, or was there a mistake in filling? Good question, said the pharmacist.

Tap tap tap.

We ran out, he said. We don’t know when we will have more. No, we can’t call you when we get more in. No, we can’t give you the rest of the prescription. You’re going to need a new prescription from your doctor. And you can’t fill it for ten days.

I got so frustrated I walked off to calm down, and then went back and apologized to the pharmacist for dumping drama on their day. They were very, very nice about it.

It’s of those ADHD meds. A controlled substance. So the hurdles for filling the prescription are high, very high. 

Once, I waited for half an hour in a busy CVS because the pharmacists had to keep the stuff in a vault, enter a passcode, and wait three minutes. They kept missing the window to open the safe because they were busy helping other patients.

Everyone needs their meds.

But why shortages?

It’s not just ADHD meds — weight-loss drugs and antibiotics also regularly run short, making patients sicker (and sometimes dead) while doctors sink even deeper into bureaucratic quicksand. Almost nine out of ten primary care practices, and one in five patients, struggle to get the medications they need.

For one thing, there’s a profit motive. Is there ever not a profit motive?

Pharmaceutical companies aren’t doing research on antibiotics because they don’t think they’ll make money on them. Insurance companies pay as little as they can manage — which seems reasonable given the cost of drugs with no generic equivalent, but then pharmacies lose money and stop stocking the meds. Which brings us back to the manufacturers, and how they use legal games to keep patents in force.

Albuterol, a widely used asthma medication, was developed in 1966, first sold in 1969, and patented in 1972. The most recent patent expired, finally, in 2020. 

But the supply of ADHD medications has unique limitations.

The DEA says ADHD meds are addictive and controls how many pills can be made every year. In 2022, they cut production of one group of ADHD drugs by almost 30%, resulting in immediate shortages. Drug manufacturers exacerbated the issue by failing to produce their full quotas.

Meanwhile, Covid lockdowns saw ADHD symptoms get worse among young people worldwide, while ADHD diagnoses zoomed* among adults, as demands on executive function increased dramatically with remote work and school. This predominantly affected women, because they (we!) do most of the child and elder care, and because girls with ADHD are so often called ditzy and spaced-out — or misdiagnosed with anxiety or depression.

When I was diagnosed with ADHD and finally started meds, I could suddenly get things done, which made me realize I wasn’t actually lazy, disorganized, and dumb, which in turn vastly improved my mental health. Go figure.

But why are ADHD meds even regulated? 

The idea that disease is caused by weak discipline or poor life choices is widespread and long in the tooth. 

Mental health stigma is particularly deeply ingrained. Denial that ADHD even exists persists, long after it was added to the DSM in 1980 (as ADD). No one (I hope!) would object to stabilizing a broken bone with a cast, but the current US Secretary of Health thinks medications for depression, ADHD, and weight loss are a threat to Americans’ health.

Despite claims of soaring stimulant abuse, 1.4 percent of people older than 12 misuse ADHD medications, and the numbers have gone down in the past decade. 

It is hard to find data on adverse effects experienced by people who misuse ADHD drugs, partly because studies of overdoses often lump them together with other  prescription and black-market stimulants. Large studies of adverse effects associated with ADHD medication abuse report rates of serious side effects between 0.2 and 0.4 percent, though smaller studies have found higher rates; a handful of deaths are reported (pdf, page 106).

For context (pdf, pages 2, 10): In the US in 2024, almost three out of five people older than 12 had used any illicit drug, consumed alcohol, and/or used tobacco in the month before they were surveyed; one in five binge drank. More people used cocaine (1.5%) or hallucinogens (3.6%) than took ADHD medications they hadn’t been prescribed (1.4%, pdf, pages 10, 12, 17).

More context: Drug overdose killed 80,000 people in 2024. Drinking caused about 178,000 deaths annually, in 2020 and 2021. Tobacco use is linked with half a million deaths every year. 40,000 people died in car accidents in 2023.

Medication is really helpful for people with ADHD. 

People with ADHD who take medication have 40% fewer injuries in car crashes. Women on ADHD meds are 41% less likely to commit crimes. (Among men, it’s 32%). Both men and women are 31% less likely are to abuse non-prescription drugs, an effect that holds even after they stop taking ADHD meds.

On top of that, people with ADHD are at higher risk for dementia — but not if they are medicated for it. Fifty percent of people older than 75 are expected to get dementia, mostly women, and it’s not just that we live longer: at any age, almost two times more women than men get diagnosed. 

I’m not likely to start committing crimes or taking cocaine, but I’d love to live out my life without losing my mind, or at least, not losing more of it than Long Covid already took.

And I would love to know why it’s harder to get medication for ADHD than it is to buy a cigarette, a bottle of tequila, or a car.

“You Can’t Know Until You Try”

Visiting Florida, my then-partner and I talked about our plan to go to Universal Studios next. My grandmother got out a faded technicolor photo album from her trip to Disney World in 1970.

I got the hint.

“Do you want to come with us?” 

“Let me think about it.”

                …

“If I go with you, I’ll need a wheelchair, and then we’ll get to go to the front of all the lines.”*

At Space Mountain, if I recall correctly, signs warned that the ride — Raiders of the Lost Ark? — was intense.

“Are you sure you want to go on this one? It won’t be too much for you?”

“You can’t know until you try.”

It was a little too much for me, but not for her. I have such happy memories of that day, because my grandmother had such fun.

========

The Long Covid learning curve is a never-ending thing. Would it be too much for me to go to my cousin’s diving meet? 

Diving rounds, it turned out, ran simultaneously with swim heats. There was a lot of cheering, whistling, clapping, and general exuberant happy college student energy bouncing off the walls. I found a seat at the back, put in the earplugs, started taking photos.

I watched the various dives, recalled my own brief period of diving lessons, wondered what might happen if I tried a back flip now. When the dull roar crescendoed into deafening rumpus I put my hands over my ears. I was having a good time. 

After 30 minutes I stood up to leave. My stomach threatened revolt, my legs were weak, my balance was shot; I took the stairs carefully, gripping the rail. Back home, I staggered in the house and dropped into bed.

Catherine, bringing me tea: “was it worth it?” 

I don’t know. 

I’ve been working an hour a day, maybe two, trying to finish editing a book. I try to pace myself carefully: if I push myself too hard, I can’t work the next day. Or days. Or weeks. My eyes don’t focus. My short-term memory, gone. I can embiggen the type, and read the letters and the words. I can follow a short sentence. Anything longer, my brain runs out of memory buffer. I can’t hold on to it, so I can’t process it. 

The rest of today is shot. Tomorrow? I won’t know until I get there. 

========

* Not a scam. My grandmother could stand, and she could walk. But she couldn’t stand in line for an hour or two, and she couldn’t walk miles around the park all day. Even the distance from the parking lot to the main gate would have wiped her out.

See someone who looks like they can do stuff, sporting a handicap tag? You have no idea what they’re carrying. Don’t judge.

Who Makes Health Care Decisions?

Yesterday I had a nerve conduction study and electromyography (EMG): they put electrodes on different spots to see if electricity will go through your nerves, and then they stick needles in your muscles, ditto.

“It’s not painful.” — the world wide web. 

When the study is underway, the surface electrodes will at times transmit a tiny electrical current that you may feel as a twinge or spasm. The needle electrode may cause discomfort or pain that usually ends shortly after the needle is removed.

That “tiny electrical current” hits me like a powerful jolt. At best I levitate right off the table; at worst, it hurts like hell. Oddly enough, the needles didn’t bother me. But the electrical current buzzing through them… yeah, I felt that.

“Your reflexes are working.” — the doctor.

By the time the test was done, I was simultaneously dizzy and vertiginous. Dizzy: feels like the world is spinning around you. Vertigo: feels like your brain is spinning inside your skull. Both: you don’t wanna find out.

I asked for a wheelchair to get to the car. (Catherine was driving.) The med tech took one look at me and got a nurse, who told me jokes and checked my blood pressure and let me rest for another half hour, and still the med tech wheeled me all the way to the car door.

Let’s just say the rest of the day was not particularly pretty.

I went to sleep dizzy, woke up with vertigo. Eventually I wove and staggered from bed to couch. Dogs know: Coco has been very attentive.

What’s really wrong with this picture: 

there is no medical rationale for the test.

Peripheral neuropathy makes my feet feel like they’re on-fire burning. I keep a bag of beans and rice in the freezer; it takes the edge off.

Nerve conduction and EMG can rule out nerve damage. Docs haven’t recommended the tests, because neuropathy, without nerve damage, is a common symptom of Long Covid.

But the insurer [I’m calling them “Mutual Farm”] wants me re-evaluated — less than a year after they started paying disability benefits. Send updates from all your doctors, they said. And get an EMG.

I can’t make this up:

Mutual Farm: Get an EMG.

Me: What’s an EMG?

MF … aahhh, electrosomething, I dunno…

If Mutual Farm says get an EMG, and I don’t, they can say, no benefits. They’d probably lose if I fought it, but they’re gambling on that being just too hard.

So, I got an EMG, and I crashed. The technical term: post-exertional symptom exacerbation. Six hours of neuropsychological battery, two weeks from now, is also going to take the stuffing out of me, and I’ll crash again. The more often I crash, the longer it takes to “recover” to post-covid normal. And the more likely I end up at a lower baseline.

In other words: to protect their profits, the insurer is damaging my health. 

Charlie Kirk’s Legacy: “Free” Speech*

I told myself I wasn’t going to spend any more time thinking about Charlie Kirk, but here I am.

Opposing what Kirk stood for is in no way “celebrating” his death, a charge leveled at hundreds of people who have been fired, disciplined, or investigated over their opinions about him (and at me, over what I wrote two weeks ago, which mostly just quoted the man himself).

To the contrary: it’s important to make an honest assessment of the causes he supported, both rhetorically and financially. As Nikole Hannah-Jones cogently argues, “The mainstreaming of Charlie Kirk demonstrates that espousing open and explicit bigotry no longer relegates one to the fringe of political discourse.” 

When I was a teenager in the late 1970s, an aunt got me a subscription to a magazine that counseled young women that if we wanted to get dates, we should learn to ask questions, listen with interest (or at least pretend), defer to guys’ opinions — and certainly never contradict or correct them. Oh, and “smile, honey.”

Charlie Kirk, on Taylor Swift’s engagement: “Reject feminism. Submit to your husband… you’re not in charge.”

Christine Craft was a TV news anchor whose boss demoted her because, he said, she “was too old, too unattractive, did not defer to men and did not hide her intelligence to make men look smarter.” This was in 1981 … not 1950 or 1881. 

She sued, and won; a judge overturned the ruling; she sued and won again, an appeals court struck down the ruling, and with it the jury’s proposed $325,000 award. The Supremes declined to hear the case. Sandra Day O’Connor dissented.

That was four decades ago, ancient history, things are different now, right?

Sigh.

Kirk: Young women should get married, “submit” to their husbands, and “have more children than you can afford.”

By the mid 1980s, respectful use of language was derided as “political correctness.” More recently, #blacktwitter and #metoo moved to hold people responsible for their words and deeds; angry people who didn’t like being called out for bigotry and sexual assault complained that “cancel culture” deprived them of their right to free speech.

Put another way: if people disagree with them, they think they’re being being censored. 

Disagreement is not an assault on free speech.

Having freedom of speech means you don’t get jailed for what you say. But it also doesn’t mean you get to dictate how people react.

Kirk: Women who are still single in their early 30s get “depressed, suicidal, anxious, and lonely” because they’re “not as desirable in the dating market”; so they “lash out … by voting democrat.” 

=====

The Trotula, an influential handbook of medieval medicine: Virgins of childbearing age who don’t (get married and) have intercourse will get sick. This can also happen to widows (pdf, §47, p. 85).

Studies of discourse and language have demonstrated that in mixed groups, men talk more than women. But everyone thinks women talk more, because patriarchy.

When they get interrupted, men fight and yell to finish making their point.

Men interrupt more frequently than women, and they usually interrupt women; when women interrupt, they also interrupt other women by an even wider margin than men. Kirk regularly cut off his interlocutors.

Kirk didn’t, in fact, foster intellectual curiosity or collaborative learning. 

His definition of “debate” meant interrupting and hectoring his interlocutors, peppering them with irrelevant questions, and changing the subject if he didn’t like how a conversation was going. He lied liberally bolstered his arguments with things that weren’t true. In short, he fought to win, not to learn or to persuade.

The folks who think Kirk’s death represents a blow to free speech seem to have forgotten, if they ever recognized, that he actively encouraged harrassment of university faculty via the “Professor Watch List.” His followers listened: numerous professors got threatening messages as a result of being named on the site.

The right’s claim that people who disagree with Charlie Kirk (or simply quote him accurately) are celebrating his death, and their calls to discipline, demote, or fire those folks, suggests that they feel/fear speech opposing their agenda as if it were an assault.

*Free speech, it seems, is for Kirk and others like him.  Not for those who disagree.