Chapter 21 - Wheelchairs

Currently, I have quite a few different wheelchairs, six in total, two of which are almost prepped for donation. Each chair has a fairly narrow set of circumstances that they are optimized for. That means that each chair comes with its own unique set of compromises or issues. The chairs also range wildly in price from $3,000 for my commode chair to upwards of $40,000 for the new power chair. Here in Colorado, Medicaid typically pays for a new chair approximately every five years, if necessary. The cost and time involved in making decisions about the chairs feel enormous. If you want to change some measurement, you need to be prepared to deal with any unforeseen effects for the next 5 years. Even if you are lucky enough to get to trial the exact equipment you are ordering, you rarely get the opportunity to try it in every relevant situation, and there lurk those little quality of life details that can end up being so important. I’ve made a number of changes I thought would really help, and while the vast majority have had the intended overall effect, I definitely ran into a number of difficulties just dealing with small unforeseen consequences. As a quick example, I chose to not have the seat back on my new manual chair lock in place to have fewer parts and make it easier or quicker to fold for transport; I quickly realized that I used the seat back when I leaned to the side or leaned forward and I had to completely rework how to do it without that rigid structure to rely on.

Let’s go through the chairs one by one and try to give you a picture of why I might choose to use one chair over another, or just why I have so many chairs. We’ll go in chronological order, starting with the first chairs that were ordered for me while at Craig hospital.

The first chair that was prescribed, my primary chair, was my power chair, a Quantum 6000Z. When it was ordered, the quoted price was in the range of $15,000 to $20,000. I don’t remember the exact amount because my insurance covered the entire amount; plus, there is a whole game that manufacturers, vendors, and insurance companies play that make understanding the actual costs really difficult. To complete the cost section, there have been nearly $20,000 in repairs and maintenance, over the last 5 years. I had no reference point for typical repair costs over time, but when my favorite tech, and just all-around amazing human Ben, saw my repair history recently and just said “jeeesus, bud…” I had a fairly good idea that was probably over average. That chair topped out at just over 6 mph and had a range of approximately 18 miles. Weighing in at over 250 lbs. it is a bit of a wrecking ball. Underneath the chair there is a special hook-up that allows me to just drive it into my van and drive over a box that locks it in place. When moving around, if the chair senses resistance, it applies more torque to go over the obstacle; the thing is, it has no idea if the thing stopping the chair is a large crack in the sidewalk or someone’s foot. If I am inside my apartment and accidentally run into something like a table or wall, the chair becomes possessed and tries to play monster truck, attempting to destroy everything in its path. I have broken table legs off, punched holes in baseboards and walls, torn doors off of the hinges, it actually only broke the bottom hinge then swung from the top hinge and punched a hole in the ceiling, and broken a plethora of other items, but thankfully I haven’t hurt anyone, as of yet. It’s not a small chair dimensionally, so small spaces are a bit of a nightmare. On the other hand, it is basically unrivaled in terms of the convenience it provides for getting from place to place.

At some point towards the end of my stay at Craig hospital I was given the option to order a manual wheelchair, once it was determined that I could actually use one. Of course, I was excited and wanted to move forward right away but my PT Mary was much more hesitant. Her concern was that I didn’t necessarily need the manual chair right away and there was a high probability that I would have significant functional or strength changes which could change the specifications of the optimal chair for me. Her thinking, from what I remember was that I could wait a while and see how things were progressing and reevaluate at that point, reducing the risk of getting stuck with a suboptimal chair for 5-ish years. That was definitely the smart, responsible option, and so obviously I stared my impatience and excitement in the face and defiantly said, “nah, let’s do this, boys!” I’m not very good at impulse control in certain situations, and this was definitely one of those. I trusted Mary and her opinion implicitly and had she said it was a bad idea I would have listened; I did take a few days to consider it all, though I don’t know whose idea that was or how willingly I went along with it.

After deciding to move forward with ordering a manual chair, they took measurements and asked my preference on a few details, such as the frame color, and ordered my Quickie QRi wheelchair. That chair retails for around $2,000, but after all things were added, the cost was probably over $3,000. To the credit of Mary and Ben, my wheelchair rep, they nailed the measurements and when I ordered a chair years later, I used nearly the identical measurements. The Quickie QRi is a very simple aluminum frame rigid manual wheelchair, if you google image search for “rigid wheelchair” mine will be in the top results. Because it is so much less chair, it was much easier to navigate indoor spaces, fit under tables, and get closer to people; it’s kinda like the difference between trying to hug someone sitting in a La-Z-Boy [this spelling, while correct, haunts me… why is it not Lay-Z-Boy!?] and hugging someone on a classroom chair. The issue came with trying to traverse longer distances or up any sort of hill, which meant that for a while, I only really used the chair at home.

After a few months, I was able to go to Craig hospital and try out a few different power assist devices for manual wheelchairs. There is one device, called a SmartDrive, which is a motorized wheel that sits behind the chair and attaches to the axel; it is controlled by tapping a watch on the side of the chair or on a leg and works to push the chair up to 4 mph for up to 12 miles. The thing is, it only helps in pushing forward and doesn’t help brake, meaning, if you are rolling down a hill towards traffic and are having trouble slowing down [remember, I don’t have hand function so I can’t grab onto the push-rims to slow the chair], it can only hasten your inevitable meeting with the cars. On that topic, one of the younger guys who was testing the SmartDrive before me decided against it because he forgot to turn off the wheel before approaching a downhill and it boosted him down the hill until he decided to bail from his chair, a terrifying act as a quadriplegic knowing your body is just gonna do what it does and it’s not a guarantee that you will be able to protect your head.

Next up were two different sets of wheels, both from the German company Alber [E-motion wheels and Twion wheels], that replace the main wheels on the wheelchair; each wheel has a motor and batteries built into the hub that are activated by the motion of the push rim. Essentially, the wheels detect the user pushing or pulling on the push rims and amplify the force being put in, making moving the chair, getting up to speed, going up and down hills, and crucially braking, much easier. I end up feeling like my arms aren’t just mostly decorative, which is always a nice bonus. The e-motion wheels are generally for quadriplegics and offer a number of features such as anti-rollback for hills, adjustable sensitivity for unequal strength between the arms, and multiple assistance levels. The Twion wheels are significantly lighter because they are slightly less powerful and have a shorter range, due to the smaller battery. They are typically meant for paraplegics with “good coordination and strength in the arms, no limitations of hand or finger function, and good upper body stability,” which is basically everything I don’t have. If you know me at all by this point, you know that half my brain was saying “obviously, logically, the e-motion wheels are the best suited for us,” while the other half was screaming “you shut the fuck up, we’re going with the Twions, they look better, are for paras, and have a higher top speed…” I went with the Twions… All three power assist options that I mentioned range in price between $6,000 - $7,000. Honestly, I ended up going with the Twions because they were easier to control [for me] and were half the weight of the E-motion wheels… and they look better…

After being hosed down in my closet for over a year and calling it a shower, I once again headed out to Craig hospital to see if a sliding bath chair might work to allow me to shower in any bathtub shower. The chair I was trying was the Nuprodx Multichair 6000 Tub Slider System. It consists of 4 important parts: the tub portion, which is just 4 legs with rubber feet attached to a square aluminum frame; the roller portion, which is the same as the tub portion but with caster wheels instead of rubber feet; a bridge, which attaches to both the tub and roller portions side-by-side; and a seat portion which looks like a normal chair with a padded seat with a hole in the middle, seat back, and armrests, but with the legs cut off. The seat portion can attach on top of either of the lower portions and can slide from one to another when attached by the bridge. This means that I can roll around and position the chair over a toilet but then slide over into the shower without technically leaving my seat. It also disassembles and packs up into a suitcase so you can take it with you if you travel. Again, insurance thankfully saw the benefit of being able to shower as justifiable and paid for the chair, which costs around $3,000. It was definitely not cheap but it has possibly been the most important tool in my independence. I should mention, it also breaks down and packs into a suitcase for travel, which is pretty awesome.

About 4 years after my accident, my physical picture, in terms of things that would affect my choice in wheelchair, wasn’t changing in any significant way anymore and I began researching manual wheelchairs. When insurance is paying for the chair, you are typically limited to a few major manufacturers and more standard materials, such as aluminum, for the frames. When you start venturing out into the world of individually funded chairs, there are dozens of companies building custom chairs out of more exotic materials such as titanium, magnesium, and carbon fiber. In that world, as long as you are willing to pay, you can have pretty much any modifications or customizations that you could think of. Following these companies’ Instagram accounts really reveals all the little things that you might never have thought of but could be game changing. I was almost instantly sold on one particular chair after talking to my wheelchair tech, who is a paraplegic, about his daily wheelchair; he had an unreal number of chairs for all different uses like shooting, basketball, wheelchair rugby, etc. and worked with all different companies so it wasn’t hard to trust his opinion. Based on our conversations, I ended up ordering a LasherSport BT-Mg-A. I have no clue what the BT stands for or signifies, but the Mg signifies that the frame is made from a special magnesium alloy, while the A signifies that the chair features an adjustable center of gravity, basically how far in front or behind the axle you sit, affecting balance. Now, I’ve only adjusted the center of gravity once, but even putting a backpack on the back of the chair can make it really prone to flipping backwards, something that can be compensated for by adjusting the center of gravity, so it’s nice to have that option. With all of the options I wanted, the chair topped out at around $9,000, though I opted to order a few parts separately from the chair and fabricate a few parts myself because it was marginally cheaper.

Some of the upgrades I added were purple anodized rims and hubs on my wheels, a carbon fiber seat back and seat pan [what the cushion sits on], Froglegs front casters [front wheels with little suspension bushings built in to smooth the little bumps out], and some German push rims designed for quads with no hand function [they have a specific shape and coating to help increase grip without destroying skin and clothing]. I basically ordered the chair as if I were a paraplegic with no power assist and no anti-tippers preventing me from flipping over backwards. Shortly after receiving the chair, reality smacked me in the face and I flipped over backwards, bringing my table and laptop down on top of me, splitting my head open, requiring my scalp to be stapled shut; I learned my lesson… mostly, I still don’t have anti-tippers. 

Finally, we come to my most recent chair. My old power chair was slowly falling apart and not very comfortable for me anymore and so I was evaluated for a new power chair at Craig hospital, after waiting until 5 years from when I received my first power chair, for insurance reasons. I got to trial multiple chairs and assess them in a few different environments, a much easier process when you have slightly more than 0 experience like last time. Given my previous research, which I did quite a lot of, and specific requirements for the chair, the field was quickly narrowed to chairs from three different companies Permobile, Invacare, and Quantum, the manufacturer of my previous chair. I had basically the whole week to try them out and really get to know the chairs, but after a few quick rides and a talk with some of the people who repair the chairs, I quickly decided on the Permobile M5; it offered the best combination of reliability and functionality. The chair, as spec’d for me, costs over $40,000, and for reference, that is the cost of more than a kilo of pure platinum; you could buy two 2021 Volkswagen Jettas for that price… TWO brand new fucking CARS… Part of what makes it so expensive is the fancy seating system that raises 14”, lays completely flat, reclines, tilts, etc.

Here is a little timeline of how things went trying to get the new power chair. In mid-January I contacted Craig hospital about scheduling a reevaluation there, where I would get a general check-up, an appointment with urology, and an appointment to be evaluated for the new power chair. Due to Covid-19 pandemic, they were on a reduced capacity for visits so my appointment was scheduled for mid-February. It felt like an eternity but when mid-February finally rolled around and I got to go in and see everyone I was filled with excitement and anxiety; excited to finally get a new chair and to see everyone, anxious about driving out there and about seeing everyone. The whole process was spread out over the whole week as there were lots of people to see, unrelated to the chair, and we would need to try multiple chairs, select one, take all relevant measurements, and decide on all the possible options. That meant that by around February 19th, the order was ready to move to the next phase, which was to pass the completed order forms to Numotion, my mobility dealership. After processing, I got a notification on March 8th that Numotion had made the request for my physician’s signature on the medical documentation, basically verifying I am crippled enough. I don’t know why the order wasn’t submitted with the signature included, saving multiple weeks of waiting… I’m sure there is some logistical problem preventing that. After another couple weeks, the medical documentation had been processed and it was on to the insurance approval phase, probably the most nerve-wracking part of the process because of the possibility it all just gets rejected. At this point you just sit and wait for a response for an indeterminate amount of time. It feels a bit like what I imagine sending a letter back in the day felt like; it takes weeks to get there and back and, in the meantime, you have no idea if they even received it.

Thankfully, my pony hadn’t died of dysentery [Oregon Trail X Pony Express] and on April 13th I received notification that the chair had been approved by insurance, apparently with very little trouble; often there can be a lot of back and forth to medically justify each and every bit of the chair. The same day, they also let me know that Numotion had placed the order with Permobile, the manufacturer of the chair. A little over a week later, on April 21, I received another pair of updates; the first saying that Numotion had received all of the parts and they were moving to the assembly phase, the next saying it was assembled and ready for delivery… Well, that was quick. At this point I started to get pretty excited; my chair was assembled and “ready,” just across town. I had a strong compulsion to drive up there and tell whatever lie necessary to take the chair home with me. As life has a habit of doing, it took me down a peg as the days rolled by and I didn’t hear from anyone. By May 4th, I started to get anxious… well, more anxious than usual, and I emailed my OT, Ruby, to see if she knew anything about what was going on. It turns out the chair had a little electronic issue that needed to be fixed before they delivered it to Craig, but it was being delivered soon. The sheer number of things you can change, both mechanically and electronically is mind boggling We set up the appointment for the chair fitting for all those fine adjustments, but it wouldn’t be until May 20th… ugh, I get why, but waiting another 2.5 weeks just hurts…

This is where things started to get overly complicated and difficult, resulting in a lot of wasted time. The problem was, in order to drive from the new chair, I need a special bracket installed on the chair to allow me to lock the chair in place in the car. Sounds simple enough. However, apparently, I need to take possession of the chair before they can take the chair to a third-party dealer to install… but I would need to drive it to the dealer to have it installed, except, obviously, I need the bracket installed to drive, a fun little Catch 22. Also, I need to be fully fit in the chair before going to have the bracket installed because you don’t want to set up the lockdown system in the car and then go change your position in the chair. Oh, and no one had ordered new positioning belts for my torso, which I need to keep me upright while driving. We thought we had a plan to move forward and juggle everything effectively; it turns out, we had thought through how to juggle that many items and then tossed them all in the air, hoping for the best. Fun fact, the ability to throw a large number of items in the air is technically not juggling. There were just so many moving pieces and all of them were interconnected. In any case, I showed up at the appointment excited to at least get the process started. I wasn’t overly concerned about it all getting finished eventually, but that is in large part due to the fact that I have the luxury of working from home and choosing my hours. If you have to be at work every day, it would be a bit of a nightmare having to schedule multiple appointments for the chair; either having no prior notice or having to wait weeks between each step. Thankfully, in that first appointment, we were able to finish the whole initial fit for the chair and I was able to take the chair home to test before the final adjustment. Unfortunately, the chair still didn’t have the positioning belts or the lockdown system for the car so I couldn’t use the chair as my everyday chair. There was also the whole, trying to take home a power chair, while sitting in a different power chair; highlighting the need to not be handicapped so you can move your handicap equipment thing.

My next appointment was set for June 3rd, so I had plenty of time to test the chair and start to build a list of adjustments and issues that I would need addressed. When I discovered an issue with the transfer from my manual chair to the power chair, I realized that, in order to get help fixing it at the next appointment, I would have to figure out some way to get two power chairs, a manual chair, and a dog into the car, out to the hospital, and inside. I decided to take a shot in the dark and asked if the OT, PT, and wheelchair tech could all drive up to my place. Well, they are amazing, and all agreed to make the 40+ min drive up to my apartment, instantly relieving a metric ton of stress and anxiety. On the day, they got to my apartment and got right to work adjusting the chair and reprogramming the controls. It wasn’t anything major; adjusting the arm rest, slowing down the turning acceleration, setting the memory positions, etc. However, being the princess and the pea, each minor adjustment made worlds of difference. In terms of my positioning in the chair, everything was set; or at least set enough to be confident when positioning the lockdown system for the van. One problem we ran into along the way was that the seat cushion that I use [and most in general] only has Velcro on the front half that holds it on the chair. This meant that between the play in the cushion cover and lack of Velcro on the back, the cushion just slid to the side as I tried to transfer into the chair. We ended up using some extra strength Velcro for the front and a Dycem [silicon] mat to give the back some grip or extra friction; it worked, but it’s still pretty sketchy. Fun fact, I didn’t realize it was an issue until I found myself stuck between my chairs needing to call 911 for help… well, technically I used Google home mini to voice call my sister in LA, who called police non-emergency here in my town in Colorado, who connected her to 911 here. I feel like a real ass hole having a fire truck and ambulance, and all the associated personnel, show up with lights and sirens just because I fell… 

Rather than waiting for people to order the positioning belts, waiting for insurance approval, delivery, and scheduled install, I just ordered, paid for, and installed them myself; still not sure why they weren’t ordered with the chair… Anyway, everything else being done, I called the company who would be doing all the modifications for driving and they ordered the bracket to lock my chair to the van. After the parts finally arrived, a few weeks later, we took the van and chair down to them, let them do their thing, and voila, I was back to driving. From start to finish, the whole process took a little over 6 months before I was able to fully use the chair and be fully independent again. There were LOTS of opportunities to streamline this process and cut months of time out of the whole thing, but there are a lot of moving pieces and the cheapest option is typically the slowest option. I don’t blame anyone that I worked with, I am incredibly grateful for everything they did to help me get the chair; I’m sure there are lots of things on their end that make them want to pull their hair out and they did an amazing job in spite of them.