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/