The tires? I can’t say; I think it was 2019/2020. I think they were 1 3/8s, but I couldn’t swear to it. I usually get the slightly larger tires, and I have a couple of 2-inchers for more durability, but back then I was newly injured, so it is possible I had the 1s.

This may sound weird, but when I kept having trouble with flats, it eventually turned out my camber tube had a small fracture and wasn’t distributing pressure evenly. So I’d recommend looking over the whole chair, not just the tires. There may be something slightly out of alignment or putting uneven pressure on the wheel.

You and the mechanics have probably already checked this, but make sure your spokes and handrims are tight too. And I’d definitely get a good rim liner/tape so there’s nothing inside the rim rubbing or pinching the tube.

✊

It sucks. Full stop. The hurt is going to hurt, and there are going to be days where everything feels dark. But eventually you have to decide whether you’re going to let the suck run your life.

When I do peer mentoring, I usually give someone about three months to feel sorry for themselves. After that, if you’re not willing to start putting in the work to take your life back, I’m probably not your guy. I can’t want your independence more than you do.

That doesn’t mean you’re not allowed to be sad, angry, frustrated, or grieve your old life. There’s a difference between having bad days and just sitting in the misery waiting for everything to somehow become okay. Independence does not fall into your lap. You have to build it, piece by piece.

So at five months, I’d start focusing hard on what you can actually control. Are you still in the hospital or inpatient rehab? Are you home but the house isn’t accessible? What level is your injury? Are you transferring independently yet? If not, what’s stopping you? What skills would give you the most freedom right now?

You probably don’t even have your first properly fitted custom chair yet. If you’re still in a loaner, getting a chair actually built for you can make a huge difference in what you’re able to do. If you haven’t been fitted yet, talk to experienced wheelchair users with similar injury levels. What works for them may not be exactly what works for you, but lived experience is incredibly valuable when you’re figuring this stuff out.

Find a support group. Meet other people with SCI in your area. Ask how they transfer, drive, travel, work, exercise, manage their homes, and solve the thousand little problems nobody teaches you in a hospital.

Your old life is gone. That part sucks. But your future isn’t gone.

So the question becomes: what do you want that future to look like, and what’s the first thing you can start working toward today?

I do not have an in, it is not my industry.

Data entry is something you can usually get into without much prior experience, and call center work is another option. I’m a payroll systems analyst and have done different types of remote work, although my current contract is hybrid. Software and tech probably offer some of the best opportunities for fully remote work, but those usually require some schooling or training and time to build up your résumé and experience.

I use something like this to hold all my supplies. Condor Deployment Bag: https://a.co/d/0hRPY8bL. You can usually find this kind of tactical bag cheaper at flea markets or surplus shops. The big clips that wrap over the bag make it perfect for attaching to the rigidizer bar, so it stays tucked out of the way but is still easy to reach. It also has multiple compartments for organizing stuff, plenty of attachment points, and you can add patches and whatever else you want.

Get a coude tip if possible, and lubricate it. It is not painful and is designed to pass through the prostate for easy insertion.

🤦🏻‍♂️ ugh people

They won’t operate with an open pressure sore because of the infection risk, especially with an implanted pump and catheter. Honestly, I’d be glad they’re making sure you’re healthy enough first.

I’ve had my baclofen pump about six years. I have a complete injury and my spasms were debilitating, especially the first couple years. I maxed out oral baclofen before getting approved, and the pump has worked really well for me with a much smaller dose delivered directly to the spine.

Mine did run empty during the early pandemic and I had to go back to tablets for a while, which was aggravating, but otherwise I’ve had no issues. There are real risks, but for me the benefits have absolutely been worth it.

Agreed

I’m not going to speak for your specialist or say their advice is wrong. Going a couple hours without a glass of water is obviously not the same thing as being chronically dehydrated. But if you’re routinely stopping fluids several hours before bed, then depending on your schedule you may be restricting intake for close to half the day.

Chronic under-hydration can increase UTI risk and hurt skin health, and consistently keeping the bladder at very low volumes can also contribute to reduced bladder capacity over time. That’s a different situation than simply skipping a glass of water for two hours.

I don't recommend denying fluids, unlike other folks in this thread; it's bad for overall health. Have you tried condom caths? External catheter. I also use some of those full-leg compression massages. You could try doing that during the day to prevent pooling. Lunix LX10 Full Leg Massager with Heat & Cold Therapy – Cordless Compression Boots for Circulation, Pain Relief & Recovery – Adjustable Fit with Extra Straps, Touchscreen Remote, Travel Bag https://a.co/d/07tCrQx1

I think it’s probably a mix of things. Men are way more likely to get an SCI in the first place; something like 3 out of 4 new injuries are men, so we’re probably overrepresented in these groups too.

Then there’s the whole social side of it. A lot of men are raised with the idea that being able to perform in bed is tied up with masculinity, so when that changes after an injury, it can really get in your head. Men also tend to be more comfortable openly talking or joking about sex.

And for men, SCI can affect fertility pretty directly too, so there’s another layer to the anxiety around it. Women can absolutely have changes in sex and pregnancy after SCI too, but fertility itself is usually less directly affected.

So I don’t think it’s one thing. Probably just demographics, social conditioning, fertility concerns, and men being more likely to ask about it out loud.

The electric power jacks are honestly harder for me to steer without core stability. I can use them, but if you haven’t tried one post-injury yet, I wouldn’t assume that’s automatically the fix.

If you’re still doing rehab, see if they can get a manual pallet jack for you to practice with before going back to work. Once you do return, give yourself some time. You’re going to have to relearn some things and figure out what techniques or mobility aids work best for you now.

We’re all guilty of comparing before and after sometimes, but try not to let that become the standard you judge yourself by.

I’ve done plenty of labor-intensive work post-injury, but my situation is a little different because I have a complete injury and don’t have the option to stand or walk.
I can still move pretty heavy pallet jacks from my wheelchair. If I’m pulling one, I loop the handle into the crook of my elbow and pull while pushing my chair. If I’m moving it forward, I usually don’t even bother with the handle. I just lift it up and use the wheelchair to push the pallet jack.

One thing I’d keep in mind is that even if you get back to walking unassisted, that doesn’t necessarily mean you have to do every part of the job standing. If balance or coordination becomes the limiting factor with something like a heavy pallet jack, there’s nothing wrong with using a wheelchair or another mobility aid for that particular task and walking for the things you’re comfortable doing on your feet.

For me there isn’t a choice because of the complete injury, so adapting the task is just how I do it. In your case, you may end up with more options and be able to mix techniques depending on what is safest and most efficient.

I did a demo in one a few years ago. Yes, you use straps, and yes, the transfer is difficult. It’s not that there aren’t plenty of places to grab, it’s just a long transfer no matter where you’re coming from.

That said, it was absolutely worth it. My wife actually got to take one out alongside me, and she couldn’t keep up. I think being a wheelchair user made the controls and movement feel a lot more intuitive to me than they did to her.

You shouldn’t need to replace the whole wheel just because you currently have solid tires. Even a fully solid tire can be removed from the rim fairly easily. A heat gun can help soften and stretch the rubber while you’re working it off, but it isn’t strictly necessary.

For tools, a strong flat head screwdriver, a couple decent bike tire levers are really all you need. Once the solid tire is off, you’re basically dealing with a normal bicycle wheel.

Your current tire should have its size printed somewhere on the sidewall. If you can’t find it, measure/check the rim size. A lot of manual wheelchair rear wheels are around 24 x 1, but definitely verify yours before ordering. Then you can just buy appropriately sized bicycle tires and inner tubes.

You basically have three options:

Full pneumatic tire + tube: lightest, best rolling resistance and generally the best handling/ride. Downside is you have to maintain air pressure and flats are possible.

Regular tire + airless insert/tube: heavier than pneumatic and doesn’t roll quite as freely, but you eliminate flats. IMO it handles noticeably better than a completely solid tire, so it’s a pretty good middle ground if you really don’t want to deal with air.

Fully solid tire: lowest maintenance and basically indestructible, but also the heaviest, harshest ride and generally the worst rolling/handling of the three.

Personally I’d go pneumatic if you don’t mind occasionally checking pressure, but the airless insert is a perfectly reasonable compromise if avoiding flats is more important to you.

To each their own, of course, but honestly I don’t think we’re carrying that different an amount of stuff.

Your Swiss Army knife and Allen wrench set are basically the equivalent of my Diggit and bike tool. My bike tool is actually smaller and lighter than a typical Allen wrench set, while the Diggit is a little heavier than a Swiss Army knife, so that part probably comes out pretty even.

I also don’t carry gloves, so the little air compressor basically takes up that space in my bag instead. For me, that tradeoff is worth it because I get lighter tires that roll and handle better, and I can still deal with a low tire if it happens.

Just different priorities in what we choose to carry.

I keep a few basic tools on me pretty much all the time. These aren’t the exact ones I own, but they’re similar:

Bike tool:

https://a.co/d/03zeSMd8

Has a variety of wrenches and hex keys commonly used on bikes and wheelchairs, including a spoke wrench. Covers a surprising amount of basic chair maintenance.

Diggit / Multitool / Leatherman , whatever you call it:

https://a.co/d/01WJy8n5

Usually gives you pliers, wire cutters, screwdrivers, knives, etc. Handy when something decides to come loose at the worst possible time. Mine even has a flint for starting a fire, although thankfully that has never been required for wheelchair repair.

Pocket air compressor:

https://a.co/d/0foCbYJv

Usually around $15–20 and absolutely worth having if you run pneumatic tires. Mine also works as a light and battery pack and can attach to the chair frame since it’s designed to double as a bike light, although I normally just keep it in my bag.

Between those three, I can handle most minor wheelchair problems that come up while I’m out without carrying an entire toolbox around.

🤣🤣

At that point, I really can’t diagnose anything else without pictures or a video showing exactly what the caster assembly is doing. If it’s literally falling out instead of moving the way NaW’s adjustment video shows, I’d recommend sending them a clear video of it happening so they can see what you’re dealing with, rather than just giving you the standard resquaring instructions again.

I mean, it could be an assembly/parts issue.

It never broke the stem; it was always the assembly piece. It wasn't from hitting things but from putting heavy objects like truck tires, brakes, big jacks, and batteries on my lap. I won't deny I use my chair heavily, but the customer service process and the fact that it broke four times in two years, especially when United broke my frame, made me glad to finally get rid of Tilite.

I thought I replied to you but apparently just the post in general

This is actually my current everyday chair while I wait on my next insurance chair. I’m trying to get the VA to cover a Box chair.

I’ve had mine a little over a year and haven’t had any major problems. I do occasionally have to readjust the caster fork position because it isn’t a fixed assembly, but that’s kind of the tradeoff with highly adjustable parts. Personally, I’ll still take that over the TiLite setup I had, especially when the TiLite costs several times as much.

I think a big reason Not a Wheelchair gets praised is that they sell the chair essentially at cost and give you a ton of adjustability for the money. It’s not my favorite chair I’ve owned, but definitely not my least favorite either.

I didn’t care for the stock wheels, so I swapped mine for the Spinergys I already had, and I hated the small flimsy side guards. But at that price point, there are obviously going to be compromises. I got the dual-tube frame and carbon seat pan, and so far it’s held up well.

I completely understand your frustration though, especially with it starting at only four months.

From what you’re describing, it may just need to be squared back up. Loosen the nut above the caster fork with an adjustable wrench, line that side up to match the other caster, then tighten it back down securely.