The Parking Placard (Black n') Blues

or, How I Learned To Stop Worrying and Love the ADA, Which Just Turned 35

Thanks to the Underground Bookshelf for awarding this the winner of its Disability Pride contest. It will be featured on their website next month.

It’s an epiphany when you realize for the first time that the white stick-figure on the blue parking sign is you. That's you. Now you can park in that fat sirloin of a spot. Now you are “the disabled.”

For me, this leap to disabilityhood was as every bit as much a mental process as a physical one. And I fought the knowledge, down the line, tooth and nail. I always did, with every new adaptation or assistive device, fight, fight, fight. To some that sounds courageous, but really it’s ridiculous. But I was young, I was always healthy, and I was a guy. I didn't need no stinking hot parking placard: that's for other people. I didn't need nothing. 

I had a thick head. 

So what changed my mind? I can’t remember the moment I decided to pick up a disability parking application. It must have been some watershed event, perhaps my 1,000th fall, the one that rattles your very teeth. Falling itself was no big deal by then, and I might do it a half dozen times in a day (at least that's how it felt). After a while, my body looked like Keith Richards’ after a bender, but cry-cry, I dusted myself off and got back in the game – because you've got to, nobody's going to pay your rent. But maybe that 1,000th time was the one to slosh my brain in its comfy bath of cerebrospinal fluid: Wake up, you green-gray piece of fat!

I used a walker then. An aluminum walker, to go along with the studs of my biker jacket. I would drag the thing to the grocery store for a few items, forgetting half of them by the time I reached the aisles. No browsing, no price-shopping, just throwing things in a shopping bag, and teetering back to the checkout while I fished for cash. Then I dragged my Frankenstein feet out to the parking lot again, cars politely navigating around me   the occasional Einstein would honk, not that I could turn around to see him, not that I could reach around to flick him off.

As my legs exhausted themselves, my steps grew smaller, smaller, until my energy exhausted itself and my limbs locked into jointless boards due to muscle tone. In the middle of the parking lot, I stood stock still, like performance art, like the Tin Woodsman before Dorothy Gale came along. 

The walker had wheels on the front legs so I could push it along instead of lifting and planting it with every step. But once fatigued, I lost the power to hold the walker in place, and the wheels took on a more insidious role, creeping forward slowly. As they gained momentum, I thought, 'No, no, not again.' Unable to lift my feet, my upright posture deteriorated into a letter A, opening wider and wider as the walker rolled away. I couldn’t let go   my hands were locked   so at the fateful moment I'd take a deep breath and bail, thinking: Don't land on the Chef Boyardee!

This happened once on a cold winter's night, after my friend and I attended a wake and, on the way home, stopped for a nightcap. The tavern parking lot was a thin, solid sheet of ice. I straggled back to my car, up a slight incline of drainage built into the black asphalt. Along the way I stopped to rest, talking to my patiently shivering friend while we waited for my legs to unlock.

I detected motion. Yep, I was sliding backward over the ice, in the direction of the drain. I was unable to move or resist; like a Gemini astronaut, I was only along for the ride. At the time I had no idea where I was going: I wasn't even facing where I was headed.

My buddy circled around nervously. “Hey, Fred Astaire, what do I do?”

I was picking up speed. So I had to be honest with the guy. “I got nothing."

Jim dug in behind to brace me, but honestly, in our leather-soled dress shoes, we might as well have been wearing ice skates. At this point he's pushing back simply to save his own hide. But there was nothing he could do; there was nothing anyone could do. We were a runaway train, and I was taking him down with me. Sometimes you're the slowly rolling bowling ball, and sometimes you're the pin. He was the pin.

I could imagine what it was like for someone sitting in the warmth of their car, watching us gliiiide across that parking lot. Floating, gracefully rotating in space. Maybe the Blue Danube Waltz was playing on their radio, while we skated from one side of their windshield, all the way to the other. … Faster and faster… Have you watched curling in the winter Olympics?… On and on and on…

What would become of our intrepid lads?

That’s when I started laughing. When things are out of your control, you do well to laugh. In Chicago when freezing your behinds off we often laugh it off with friends. Because it's better to freeze your heart behinds off together and be laughing, than it is to freeze your behinds off with a straight face. And that's the science behind that.

Also, convulsive laughter is helpful in defeating spasticity. In an instant, we were a giggling heap of metal and man sprawled across the dark ice. In our slick shoes, we'd be stranded on that parking lot a long time. For the life of me, I can't figure out how we ever got up again.

Lucky were the times when there was a friend around and frictionless ice to fall on. More often, it was a sidewalk or a bathroom or a busy street crosswalk, hopefully with one or more gallant onlookers there to drag me out of danger and stuff me into my car. After rebuffing their offers for medical assistance, I would fall asleep on the front seat, sometimes more than an hour, sometimes with the engine running.

Somewhere in there happened magic No. 1000, the one to knock some sense in my noggin, the one to make my noggin scream, “Get the blue placard, already!”

Before then, I clung to a weird, outmoded notion of what independence was. But once I crossed into that thin blue sign, what I found waiting for me was a Technicolor world of fuller independence, of accessible services, jobs, housing, education and protected rights, medicines and tech and yes, even decent curb cutouts and primo parking spaces   a whole societal push to involve everyone, including me, and bring everybody to the decision-making table, even hardheaded fools who happened to fall upon the right decision one day, after he fell absolutely every other place first.

Viva the ADA. Let's get riled up and make sure it lasts another 35 years and another hundred after that.

Girl, it’s so worth it: This red nylon sheet is a powerful tool for caregivers

At Endeavor rehab, when transferring me to bed for the night, a couple of the nurse’s aides lowered me onto a torso-length red nylon sheet spread on the bed. They used this sheet to move me on the bed. My roommate in this place was recovering from shoulder surgery, and turned out to be a real busybody. She always had her nose in my business. “What’s that?” she said to the female aides working on me. See what I mean?

“We use it for positioning,” the aide said about the red sheet. “It makes things easier. I use it all the time.”

Or do you say "slide sheet"?

The roommate got on her phone and found it online. The aide explained that the sheet comes in one-ply and two-ply versions. Some people like the one, other people like the two, it all depends. “Either way, it doesn’t cost much,” the nurse said, “Girl, it’s so worth it.”

“Huh,” said the busybody. She was working that phone of hers, so I had a premonition that at some time in the future I would be seeing one of these at my own home. I guess I should mention here that the roommate was also my wife.. Details, details.

“Done,” she said. “I ordered one.” See? The nurse’s ‘girl’ sealed that deal.

I should further disclose that the roommate is also my caregiver. Also that she and I are mighty grateful to that aide because the red nylon sheet has proven to be a very useful tool over these last several, eventful months.

The way the sheet works is that the nylon material is so slick that there is little to no friction when sliding. Mab will lay it out on the bed and lower me onto it with the Hoyer. The sheet is about 26 inches from top to bottom enter before we incorporate and about 52 inches side to side — only large enough for my bottom, but I guess that’s where most of my weight meets the bed. ( ! ) (Do you like my character? I came up with it just now.) Next, by grabbing an edge of the red sheet, she can more easily slide me into position higher or lower, or side to side.

Also, since we ordered one that is a continuous piece between the top layer and bottom, she can pull the red sheet out in a really nifty way. From the side of the bed, she grabs the bottom layer of sheet and pulls it out from under me. With several small tugs, one after another, she pulls out more and more of the bottom layer, while the top layer directly under me lies undisturbed. Eventually even that top layer gets tugged out, and voila, she’s pulled out the entire sheet without having to turn me over this way and that, like she would to remove a cotton sheet, for instance. It’s pretty ingenious. And the more she uses it, the better she gets with it, and the more uses she seems to discover.

A good example was when we broke an axle on our travel trailer during a recent cross-country trip. We got stuck in a Motel 6 for a weekend until we could arrange a repair for the trailer. Of course, like so many hotel beds nowadays the motel bed was on a platform. Many of you know what happened next: We were unable to use the Hoyer lift to transfer me in and out of bed because the platform blocked the Hoyer’s legs from rolling underneath. Bed platforms are everywhere in hotels across the country and are the reason we moved to a travel trailer in the first place. We have many horror stories about dealing with platforms and with hotel management concerning them. But wait, now we have the red nylon sheet. Stand back, citizen, and watch it work its wonders!

Rather than brute-force me up and out of my wheelchair, my brother had the great idea of lowering me onto the corner of the bed as best we could with the Hoyer. So, I was barely on the bed and way out of position, but I was on top of the red nylon sheet. My brother took hold of the sheet and slid me all away up to the top of the bed, just like that. His eyes bugged almost out with surprise at how easily it went. Actually it was pretty fun!

We are especially glad to have it now with Mab's still-healing post-surgical shoulder. She’s been operating carefully with 1.5 arms. Since she insists on still caregiving for me, but her using the red nylon sheet, the tasks of moving me around, and pulling the sheet out at the end of the process, are all much easier and safer. Thank goodness.

The cost of this wonderful aid: $12.

If you’re a caregiver, or know a caregiver, then girl/boy, you need to know about this one.

Here are some demonstration videos.

Hard days night: To CPAP or not to CPAP? My New Mobility article

For years, Jennifer Miller, 55, of Carleton, Michigan, was a problem sleeper, snoring and gasping through the night. Because she struggles with PTSD from the car crash that injured her spinal cord — and isn’t the biggest fan of doctors and hospitals anyway — she put off seeking treatment for her sleep issues. “I didn’t say anything for a long time,” she says. But that changed a year ago, on a night that literally left her speechless. 

“I couldn’t find breath and I couldn’t say anything. I couldn’t wake up my fiance. I had to sit up and … kept trying to breathe in and nothing was happening,” Miller says. When finally she could draw a breath, her sleep issue had new urgency. “It scared me [and] prompted me to actually speak to the doctor.”  

Illustration by Mark Weber.

Miller’s overnight scare is an extreme example of sleep apnea, the interruption of breathing during sleep. Sleep apnea is experienced by between 9% and 38% of the general population, according to one study, but within the disability community it can be much higher. More than 80% of those with T6 -vertebrae-level injuries and higher have sleep-related breathing problems, according to pulmonologist Dr. Abdulghani Sankari of DMC DRH Sleep Disorders Center in Detroit. In those with disability similar to mine, at C4 and higher, the rate is more like 90% of people.

So then it's no surprise that I turned out to have sleep apnea. Although I didn't learn about it as dramatically as Jennifer Miller did, but I still do so remember exactly the moment I found out. I'd just switched to a new neurologist, Daniel Wynn of Northbrook, Illinois, who would change my life. My daily 20-minute naps clued him in to order an overnight sleep study. Shortly afterwards, he left a voicemail … on a Saturday afternoon: “Mr. Mohler, you have very severe sleep apnea.” My sleep study report read like a horror movie script. In six hours, I had stopped breathing 327 times, with full stoppages averaging 45 seconds each. In short, I wasn’t breathing for 2.5 of the six hours. My blood-oxygen level — considered healthy in the 90% range and severe below 80% — nose-dived to 62%. 

“At least we know you have a healthy heart,” he said later, “because if you didn’t, you’d be dead.” He always has a way with words.

Sleep apnea is nothing to snooze about. Uncorrected, it often leads to, fatigue, messed up decision-making and memory problems, as well as risks for high blood pressure, heart problems and type 2 diabetes. Chronic poor sleep has been linked to shorter lifespans.

The good news is that it can be effectively treated with CPAP and BiPAP machines — but for some people, the bad news is that it is treated with CPAP and BiPAP machines. Some people get used to the things, and others not so much. The masks and tubing come in various degrees of cumbersome, ranging from annoying and uncomfortable to triggering full-on alien-abduction vibes, with strange, elephant-like hoses and Hannibal Lector-type face masks. In terms of looks, they bring to mind the spidery face-suckers from the Alien movies, and they sound like Darth Vader gasping for air. And that push/pull between very good and very creepy, my friends, is the basis of a story:

https://newmobility.com/better-nights-better-days-cpap-bipap-and-disability/

How do you sleep?

Disabled Texas Woman May Lose Coverage and Home From Medicare Cuts

“I've worked hard. I'm to the point where I own my own house,” says Nancy Crowther, 67, of Austin, Texas. “I have [attendant] services, and to lose that would be to lose my livelihood and to be desperately placed in an assisted living or something.”

Although she has spinal muscular atrophy, a progressive muscular disease with no cure, Crowther remains socially active and fiercely independent. She’s thrived for years beyond everyone’s expectations, she says, and chalks it up to her Medicaid home-care attendants, who help with daily necessities she cannot do on her own — and which she risks losing if Congress passes historically large cuts of $625 billion from Medicaid. The Senate is working through the weekend to pass its version of the spending bill in order to meet Pres. Trump’s stated goal of signing it into law by July 4.

Crowther is one of 70 million covered by Medicaid, and she’s also someone who has publicly told her story for decades to help score wins for the Texas disability community and the attendants who care for them. Now that the U.S. House passed its bill that would cut 13.7 million off of health insurance, Crowther is using her voice to call senators to tell them what Medicaid does for her — and urging others to join her.

(Above, radio version of story, from The People's News, KPFT-FM Houston, May 22, 2025.)

“{Medicaid] involves so many programs for young, for old, for different types of disabilities. It’s just a multiuse tool and if you start losing pieces of that tool, that's part of your independence that you’re losing,” she says. “Our lawmakers don't even understand that.”

Medicaid is the primary funder for home- and community-based services to keep seniors and people with disabilities living in their own homes with families and caregivers, instead of in institutional care like nursing homes that are more costly to taxpayers. These popular attendant-care programs already have waiting lists for enrollees in states across the country, and with current plans to shift Medicaid costs away from the federal government onto the states, with fewer resources, “usually, historically, the first [programs] on the chopping block are those home- and community-based services,” according to Jason Resendez of the nonprofit National Alliance for Caregiving. Losing her independence this way would be Crowther’s worst-case scenario. “The lowest thing on the totem pole would have to be an institution,” she says. “That would just be the death nail.”

In the House bill, the savings only partially fund $3.7 billion in tax cuts, the largest share of which going to those with the highest 10% of income. The bill would add $2.4 trillion to the national debt, not counting adding interest on that debt.

Crowther discovered the power of her voice years before the Americans with Disabilities Act, in the 1980s. She got involved in the movement to make Austin public transit accessible not only for people with disabilities, but also seniors and families with strollers. Since then, she’s been awarded for her groundbreaking work and has continued speaking out across her state of Texas, sometimes sharing her personal story with policymakers, or being the only disability perspective present at a meeting or serving on an advisory board.

Crowther was part of the push that moved the Texas legislature to boost wages for attendants who care for the disabled and seniors in 2023. Last month, members of her group, ADAPT-Texas, were among 300 wheelchairs users and supporters who packed the U.S. Capitol. Twenty-seven were arrested for bringing a House committee hearing to a halt, demanding they not touch Medicaid. This week, Crowther encourages fellow Texans to call their U.S. senators and relate their own stories and those of families and friends to whom Medicaid is important.

“It really fills you up with a sense of boldness, strength and compassion because you've done what was right,” she says. “And, you know, when people complain about things, I just look at them, like, ‘And what have you done about it?’ Not to be mean, but I've got to put it back in their hands.”

To reach senators’ and representatives’ offices, call the U.S. Capitol Switchboard at (202) 224-3121.

Now how did I get into this one?

I rolled onto my side for pressure relief. I have the laptop in bed next to me — I change the screen orientation to portrait so that it’s sideways, and this works pretty well. But as I’m working, I notice the craziest thing. There’s an arrowhead sticking out underneath my nipple, the bottom half of it anyway. Not a typical arrowhead, but a smooth plastic one, almost like a guitar pick. It even has a purplish composite pattern similar to a guitar pick. But it’s sticking out of my skin.

What the hell did I do now? It doesn’t really hurt and I didn’t even notice it going in, but Mab is going to blow her stack over this. I mean, how did I even do this? Because I’m always getting into bonkers crap by accident. Pulling the cantilever table off of the wall. Plunging into a ditch getting the mail. Rolling over a floor-mounted art installation. Ramming into my desk while trying to sidle up for a sip of water and finding out I sliced back a layer of skin on my forearm. My chair ought to come with safety cones because I’m a rolling disaster.

To make things worse, the arrowhead is a good ways in, and angled so that it’s disappearing under my skin … almost like my otherwise healthy skin is pulling back into position and bringing the arrowhead with it. No blood yet but I’ve got to work fast before things get sloppy. Mab has forceps that would be perfect for this but by the time she gets here it’s going to be lost under the skin and then it’s a trip to the ER and all of that. So, I didn’t have much extra fingernail but I try pinching the small corner of arrowhead before it disappears, before it turns into a UN incident.

It’s while I’m pinching at the thing — unsuccessfully, because it keeps sliding further under my nipple — that I realize that I haven’t been able to move my hand this much in years, so either this is such an emergency that my body is pumping miraculous amounts of adrenaline into my hand (something like this has happened before, but that’s another story),

Or I must be dreaming.

Postscript. It was very comfortable lying in a new position like that. When I awoke, my nipple was not pointy. I was not in trouble with Mab. I don’t take naps, but that was a helluva good one.

A view on disability leave that you probably haven't seen before

On the MS Society's Momentum blog, I write that disability leave is usually very helpful, yet it's a two-sided coin:

I remember the quiet, so pristine I wished I could bottle it. It was my first week on Social Security Disability Insurance (SSDI). I couldn’t believe I didn’t have to go in to work: No more taking 3 hours to get ready, then driving 45 minutes downtown, parking and struggling to reach my desk on the 14th floor in time. I didn’t have to do any of that, only heal. My apartment was so silent and still that the air was almost ringing.

It was heavenly.

Fast forward a few years. I got up to start my day and begin the long process of pills, washing, dressing and breakfast. My apartment was so silent and still that the air was almost ringing.

And it was driving me freaking insane!

It surprises me that I've never seen another writer saying this: that going on disability was a lifesaving opportunity for me, but the comeback effects in terms of social isolation, depression and more, brought serious consequences for me. I'd definitely like hearing from any others who had experiences like this. 

I encourage you to go for a better life on disability ... but keep your eyes peeled for both sides of the coin. 

Disinvited to the party: A new administration means new challenges to people with disabilities

Seeing the president quickly claiming that disabled workers and diversity, equity and inclusion programs played a part in the fatal Jan. 29 Washington D.C. air collision, when investigations were barely underway and no one knew anything for sure, was certainly a batten-down-the-hatches moment. Especially when it was soon apparent that there is a long record of close calls between military and civilian air traffic in that area, and even now the NTSB is looking at several possible causes including equipment malfunction that may have led the military aircraft to fly too high in the air space. Yet the knee-jerk response was to go after people with disabilities. Then, it’s not surprising from someone who publicly mocks the disabled for a laugh line.

Obviously DEI is this season’s political bogeyman. However, there are practical reasons why DEI programs came about. Yesterday I learned about a paraplegic who works for the government developing emergency response protocols to cover people with disabilities, because who is going to know how to handle the needs of people with disabilities better than other people with disabilities? And since professionals in the field want to better their knowledge, they actually want to learn how to best help people with disabilities from people with disabilities. Does that follow? It’s hardly a nefarious scheme. Many times I have been asked, as someone who is disabled, for ideas on how to set things up in ways that are better for people with disabilities, from architectural details to technology questions and even the shapes of tables. This week I was hired for a job because they need someone who has experience with disability because some of their clientele have disabilities. I hadn’t thought of it until now, but I guess that makes me a “DEI hire.” Egad. I feel so dirty.

What’s interesting is seeing how quickly the broad-based corporate support for DEI fell like a tree, affecting not only the disabled and minorities but women too. But I understand that corporate America doesn’t want a fight with authorities — it wants stability and predictability, and so its support was always as thin as a dollar bill. Take note of that time you see a commercial tugging at your heartstrings about how much the advertiser cares about you. But it’s also wrong for me to paint with too broad a brush, when plenty of big names are standing behind their principles, like Apple, JPMorganChase, Delta Airlines, John Deere, Costco, Ben & Jerry’s and e.l.f. Cosmetics.

Add in that Medicaid — a major insurer of the disabled and the guarantor of services that keep people living in their own homes instead of (and for cheaper than) nursing homes — is a likely target for cuts after the U.S. House of Representatives passed a budget resolution this week calling for a massive $2 trillion in cuts.

Also, Section 504 of the Rehabilitation Act of 1977, a major piece of accessibility law that led to the Americans with Disability Act, is being challenged by the attorneys general of 17 states. Some of those bringing the suit claim that the challenge is limited to recently amended parts of the law that cover transgender people, but the language of the suit specifically targets the entire accessibility law.

Taken together, the disability community is definitely on edge. Rather than sit and squirm over the news though, long-time disability advocacy leader Bob Kafka’s advice is “don’t mourn — organize.” For instance, the House would have to go through many steps before any proposed Medicaid cuts would become a reality, so it’s a good time begin calling your rep (Capitol Switchboard 202-224-3121) and let them know what you think about how they voted this week and how Medicaid cuts would affect you or those you know. You can likewise chime in on the Section 504 case and tell your attorney general how important accessibility is to you, the voter. These policies and provisions were hard won, and once they’re diminished or gone, they’ll be extremely hard to claw back.

It ain’t pretty but it sure is beautiful: ADA accommodations like a concrete pad can be pretty cheap

We have needed new gravel on our driveway for a couple of years now. Dry sandy soil, thick tree roots exposed by erosion, and bumps left from heavy work equipment: All have made getting around our place more and more difficult. Actually for the past few months it’s caused me to go out less and stick to the porch instead. With every year and every gully washer of a storm, the problem has grown worse. We’ve invited contractors who seem interested in the job, but then don’t hear from them again. I’m guessing that our job is too small to warrant their time, but who knows?

Then last week, I got stuck at the base of the ramp in front of the house. I was chasing a rare patch of winter sunshine, being careful not to stray too far, but on that day, even 3 feet out was too far. When I turned to go back up the ramp, my wheelchair tire started spinning in the dirt. I called Mab over to help eye up the situation, and together we buried that tire down even deeper.

They say good guys wear white hats. Well, the good guy in my story drives a white pickup. And the first thing I saw when I lifted my eyes from the buried tire was that white pickup passing by on the street. It was my buddy Gary coming home from work.

“Siri, call Gary.”

A few short minutes later, the cavalry had arrived: The white pickup pulled up right there in front of us and out piled Gary. He’s a big guy, and even though his hip was ailing, he wasn’t content to just help with pushing. Instead, he lifted the rear of the wheelchair right out of the dirt. I skedaddled a retreat up the ramp before I could land in any more trouble, but Gary didn’t leave right away — here-around you’ve got to “visit” first. All the while, he scratched his head, looking at the derned problem-spot at the foot of the ramp.

It was a couple days later, a Saturday, when he showed up again. In the bed of his vehicle he’d loaded five bags of gravel and two more of concrete mix. He raked the rock into a hook shape, curving away from the ramp. Then he spread the powdered concrete over the gravel. Mab brought the water hose and the two of them worked the concrete into the rock. I was in bed, healing from a saddle sore, during all this. But by the time I laid eyes on it a couple days later, here’s what I saw:

Not good pics, but I've gotta get this posted already.

Behold $83 of materials, 700 pounds of material, less than two hours’ work, and a whole heck of a lot of friendship. The “pad” is about 3.5 feet wide and extends out some 9 feet before curving back around like the tail of comma, giving me a good start up the driveway. For now, this gets me through. To harden a couple of remaining loose patches of gravel, Gary brought one more bag of concrete to add over the top. So now it comes to about $90.

As has been stressed over and over by the Department of Justice and many others since introduction of the Americans with Disabilities Act of 1990, access accommodations needn’t be expensive — they only take a willingness to do them. Praise be for good friends who make life a joy. Meanwhile, I’ve found another contact for gravel, and we’ll see how it goes.

World Gone Sideways: Bedsore Recovery Turns Life Topsy-Tervy

I ruptured my hull.

I done sprung a pressure sore down there, on my business end. Actually not a pressure sore, it’s a pressure “sort of”: started with a tiny cut, a fissure in the skin. When we found it I stayed in bed the whole next day, that’s how seriously I took it, and in the morning it looked safe to sail again. I kept my sails trimmed, lying back frequently in my wheelchair to take pressure off, and everything was cool.

But the next morning, we were taking on water. The split had splat. The cut had widened into … well, you don’t need the details. But now it was a thing, with its own address. It had set up shop.

For a wheelchair user this is a code red. We do our best work on our asses. Some of us even are asses. Getting a wound there would be something like a nondisabled person stepping on a nail or broken bottle, except a wheelchair user doesn’t have a second, uninjured ass he can still get around on with a crutch for a couple of weeks.

Unless you’re lucky, these things heal slow, so I’ve been in bed since last week. Once I spent the better part of a summer in bed, biding my time. When I finally made my way out of the house in late August, the bluest sky in history was out there waiting for me, blUing its ever-lovin’ top off, right above my head. Heavenly days!

But back to the here and now. In true Texas fashion, where we go bigger and more catastrophic than anyplace else, my lovely wife tripped while she was walking the critter, and landed hard on her shoulder. The urgent care center said nothing had broken or ruptured, so she’s been going around doing everything, including the caregiving, with one arm. Baby’s still got chops, but does em at half-speed.

Capsized  

A couple of weeks in, we’re generally on the mend but it’s slow going. Mary Anne is the quickest of studies, learning how to do everything one-handed, and taking more breaks through the day. She has new respect for our friend Judy, who was born with half an arm. “How ever does she put on her bra?” Judy loved that.

I am lying on my side now writing you this. And we can't get the laptop computer to lie at the same angle as my face, so it's … weird. My world is tilted, like the bad guys' hideouts in the Batman TV show.

Mary Anne made some fried rice, zapped up with sambal oelek pepper paste from Indonesia. Sitting on a stool, she feeds us the spicy rice as I lie capsized in bed. It’s at once pathetic and more romantic than our first date together, which was 35 years and 10 days ago.

But we’ll survive and rise again, like we’ve done before, then, down the line, stumble into another breakdown, so that we can rise again from that one. The waves they go up and down, but always they carry us forward. Anchors aweigh.

MS anti-inflammation and improvement from a cheap, safe OTC supplement we all know?

Studies show that oral N-acetylglucosamine produced benefits for remitting-relapsing, primary progressive and secondary progressive types of MS. After one month, nearly one-third of subjects reported less disability. No serious side effects were seen even after supplementing for long periods of time. As of last summer, the National Institutes of Health was continuing to study it, but as lead researcher Dr. Michael Demetriou of University of California Irvine School of Medicine points out, "Anyone can get their hands on [it now] if they have $20."

And that’s just what I’ve done, except that it was $17.99 — for potential MS anti-inflammation and symptom improvement.

I don’t know how many out there are like me, but I’m without an MS treatment. With primary progressive MS like mine, there are few disease-modifying drugs available. The DMT most prescribed for PPMS is Ocrevus, but my neurologist, who was one of the researchers that helped to get the drug approved, strongly warned me away from it because of the risk of respiratory infections that I, as a full-time wheelchair user, may not be able to fight off. So while the MS Society recommends that everyone with MS should be on a DMT, I haven’t been on one for years. At this point my case is only very gradually worsening, but I don’t know how much more spinal cord I have left before I develop breathing and swallowing problems or more.

Then, instead of just playing defense with symptom management alone, I’m been open to looking at promising research-study results. Nothing crazy. I stick to NIH-related stuff. One of my past neuros, who had MS himself, pointed me to a study about intermittent fasting, which I read and, yes, gave a try for a few months. It wasn’t for me, but I tried.

Another, I still stick to. Overcoming Multiple Sclerosis is a program started by Dr. George Jelinek in Australia, who has MS and went through the scientific literature of the time to come up with his protocol. It’s a number of lifestyle changes, like exercise, meditation, minimizing stress and taking daily omega-3 fatty acids in the form of flaxseed oil. The most difficult step for most would be the largely plant-based whole foods diet, except for allowing various cold-water fish — so really it’s a pescatarian diet. The thinking behind it is to minimize saturated fats, which according to the work of influential doctors Swank and McDougall, contribute to the most rapid MS deterioration. I tried going the extra step of cutting out meat altogether, since I was 95% of the way there already, and I did fine with it, and have been vegan now for about a dozen years.

There are no miraculous cures anywhere on this page. OMS is about maximizing your well-being while living with MS, including using DMT’S, Jelinek writes.

Still, taking glucosamine — make sure it’s oral N-acetylglucosamine for best results — which is available for cheap at your local anywhere store, to maybe get both anti-inflammation and improvement? With little or no side effects? Tantalizing, yes?

Related articles:

https://jneuroinflammation.biomedcentral.com/articles/10.1186/s12974-023-02893-9

https://www.webmd.com/multiple-sclerosis/news/20240710/could-help-be-coming-for-progressive-multiple-sclerosis

https://multiplesclerosisnewstoday.com/news-posts/2023/09/19/sugar-molecule-supplements-glcnac-may-ease-inflammation-ms-trial/

https://www.ucihealth.org/news/2024/07/progressive-multiple-sclerosis

https://tinyurl.com/baj4ejzb

https://multiplesclerosisnewstoday.com/news-posts/2020/10/09/simple-sugar-molecule-may-be-potential-myelin-repairing-therapy-multiple-sclerosis-mouse-study/