How to find the right vehicle for paraplegics, quadriplegics or anyone in a wheelchair.
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When I was in the market for a car, I couldn’t find a list of cars that are good for people in wheelchairs. I now realize why that is as I undertake writing for you something deserving of this title.
Here are the two reasons there isn’t a succinct list, it depends on the individual and nearly any car can be used. The “best car” is relative, there is no absolute best car for everyone.
However, there still needs to be a guide for how to find the best car for paraplegics, quadriplegics, or anyone in a wheelchair.
There are some cars that can be ruled out right away, but not many.
I’ll be using “car” referring to a vehicle of personal transport, including trucks, SUVs , etc.
Finding the best car starts with what you want, the state of your physical condition, and what your values are.
First, we’ll go over some questions you’ll write down and answer for yourself, then we’ll go over your answers and what they mean for you and what you should look at within the confines of what type of cars will work best for you. You can definitely have multiple cars of diverse types if you can’t make up your mind, but whatever modifications you need will have to be added.
Towards the end of this post, I’ll put in my videos where I talk about what to look for in a car and how to transfer into different types of cars to help you visualize and for extra help in finding a car.
When I was searching for a car, I looked at hundreds of cars online and I went to all the dealerships in my area to look at and try out the different cars. I would mostly look at the cars, look at how the doors opened and visualize whether or not it would be a good fit. Some cars I checked out and tried to get into at dealerships didn’t work at all. I could barely get into the car and once I did, there was no way of me getting my chair inside. That car was the Fiat 500x, one which I thought had a good chance of working and luckily, I tried it.
So, lets begin with finding what type of car you’re looking for.
Questions for how to find the right car for you:
Do you know what style car will fit your lifestyle?
A van with space for kids and cargo, a sports car built for speed, an SUV with all wheel drive made for extreme weather with sufficient space, or a truck made for towing, carrying and use of 4×4.
How much do you care about the time it takes to get into the car?
If the car you want took you longer to get in than your second choice, does the time or preference matter more?
Do you care more about style or about convenience?
To what level are you able to disassemble your wheelchair?
How fit are you for lifting your chair and do you have any injuries or weakness of any muscles?
Would you rather stay in your wheelchair or have to get out of it each time?
How much do you want to take apart your wheelchair (if you can)? All the way, partly or not at all?
What are some general features you would like in a car? All wheel drive/4×4, speed, economical, luxury.
What is your budget?
Once you answer all of these, you can begin to break down what these answers mean. Let’s review (coordinating with the bullet numbers above).
If you know the style that will fit your life, then that’s good, you already narrowed down where to look.
When it comes to the time to get into a car, depending on your ability, strength, and modifications, it can take a few seconds or a few minutes. If you know for certain that you want a truck, then it might end up taking a minute or more to get in. Are you okay with that? Imagine you go to get gas, park and get out only to realize you’re on the wrong side and need to get back in, turn around and get back out, all the while, you’re late for a meeting. Would you still want or need a truck enough to merit the time it takes to get in and out?
If you’re willing to change the car type based on how long it takes to get in and out, you’ll find more info for what options there are to minimize the time it takes to get in and you can determine for yourself if that type of car is what you’d want or can afford.
Depending on your physical condition, you’ll have to make some trade-offs based on the minimum of what you need. After that, you could either keep going down the road of modifications and possibly different car types so that it is the least amount of work for you to get in and out, or you can stop at the bare minimum and opt for more style or preferences that might make it harder or a slower progress to get in, but if you value style/features more, it’ll be worth it for your happiness.
What type of wheelchair do you have? Along with that, considering your physical abilities, how easy is it for you to take apart your chair? The ease of taking apart your chair varies with the type of car and modifications you get. I recommend watching my videos to get an idea of what ways a chair can be taken apart for different types of cars. The type of car/modifications you get will determine how much you need to disassemble your chair. If you’re a quadriplegic and you plan on driving alone, then a Bugatti would be out of the question unless you want to leave your chair behind. Consider the space that your chair will take up in the car, that will affect the style car you get.
Not everyone is a bodybuilder, not even most people who say they are. If you have shoulder injuries that affect your ability to take apart your chair and lift it into the car, then that’ll affect the car style. Maybe you just aren’t strong enough to lift your chair in and out multiple times each day. The degree to which you’re willing to take your chair apart will determine the style car you get along with any modifications.
If you had the option to remove the driver’s seat and roll into the car and be in your wheelchair behind the wheel, would you take that option and accept whatever style car and features you got? Removing the driver’s seat so that you can stay in your chair will affect the ability for others to use your car if the situation arises. If you’re a quadriplegic and more or less confined to staying in your chair, getting a van where you can roll in through the trunk may be the only viable option.
If you have a manual wheelchair, there are various levels that you can take it apart. Myself, I only take off the wheels and that’s it, it makes the process faster and requires less work. You might not mind of you had to take off the backrest as well. If you’re driving a smaller, sport car, then you might have to take off everything that can come off – wheels, backrest, cushion.
You can find almost every car style with all wheel drive along with other features. Since we are buying a car, it’s important to consider, within budget, what features you’d like. It’s not always possible to get all of them, but it can sometimes be the tie breaker.
Considering your budget is important (if you have one). Once you’ve answered all the questions above, you’ll be able to find out what type of modifications you’ll need, which are always very expensive, as well as the type of car.
I recommend this process:
Have your top two car types. For me it was a coupe and an SUV.
Find out what type of modifications you’ll need or want (it might not be necessary but could be preferable based on if you value the time getting in).
Will these modifications work with both, one, or none of your top car types?
If yes, then you can begin the process of finding the specific cars that are options.
If no, then find out the type of cars that the modifications will work with and then you’ll be at the step above.
Go to the dealership(s) and try out your top 5-10 options.
If the car option is a modified van that you need to roll into from the trunk, then you can usually try out different types at a nearby location that sells the vans with the modifications.
Choose the car that best aligns with your values.
When it comes to the specifics, here are some things to look for in the car.
For manual wheelchair users that will be taking the chair apart and lifting it inside:
The bigger the door the better – when it opens and the opening itself.
Try to find a car with the seat close to the outside when the door is opened.
Check into how much the seat can adjust – you might need to move it back to bring the chair inside.
The seat shouldn’t be too much lower or above you when you’re in your chair.
If it’s an SUV, test out to see if you can grab the trunk when it’s open and if not, attach a rope or something to help.
If you were to have someone else take the chair apart and put it in the car, how easy would it be? Could they just fit it into the trunk?
If you’re getting a truck that’s high above the ground, how will you get in and how will you bring your chair inside or put it in the truck bed? There are a few types of modifications for each.
For powered wheelchair users:
If you’ll be staying inside your chair, then your options (to my limited knowledge) are not vast. Most likely it will be a van or SUV with a ramp that comes out of the back or side and you’ll roll into the car.
If you’re in a manual wheelchair, here are the different cars that I’ve seen work to act as a guide:
Some coupes, such as Infinity G35
Subaru Outback & Forester (they have the ideal big door openings)
Chevy Malibu, it’s a sedan but not hard to take the chair apart from within.
Convertibles would be easy to lift the chair into.
Older cars such as the El Camino or El Dorado with the big door openings
Choosing a car holds more weight for those in a wheelchair than it does for others. Once you choose a car, you get the modifications, which are typically bespoke and can’t easily be transferred to another car. So you really only get to make one choice unless your finances are in a very fine spot and you can afford making a mistake purchase of a car.
Immediate actionable items: If you’re looking for a car, write down your answers to these questions and create a checklist of mandatory and preferred options for cars. They style, the modifications and so on. Then, go out and look for some cars as well as suppliers for modifications.
Summary: The best car for paraplegics, quadriplegics or anyone in a wheelchair doesn’t exist. Cars, though mass produced, are very personal and the best car for someone in a wheelchair won’t be the best for someone in a comparable situation. We go over the basics and in depth questions to be asking yourself when it comes to finding your best car. Overall, SUVs and vans are the most popular, but not all of them will work, it’s important to go and try your top 5 options after going through the checklist we created.
Overdeliver: If you’re in a wheelchair and also have a facebook account, you can join some groups with others that are in a wheelchair and ask them for personal recommendations, though you need to remember that everyone is different and has different values. Don’t blindly accept advice and buy the first car suggested to you. I was told by many people that I need to get a van and I’m happy I didn’t get a van.
Featured photo is my brother, mom and me just a few weeks after I got my new wheelchair
Getting your own wheelchair. It’s very important and can be done very wrong if you haven’t done it before. I was almost entirely on my own when it came to getting my wheelchair. I wish I knew more.
This is everything you need to know about getting your first wheelchair. There might be some details that are different for each person, so be sure to ask a lot of questions as well.
I’ll be giving you a list of questions to ask along with some information about what to do or expect when you get your wheelchair.
We’re going to go through my experience as I remember it and I’ll tell you what I did and what you should do, whether it be the same or different. This information is aimed mostly towards those in rehab.
During rehab, I didn’t know anything about wheelchairs. I could’ve asked or looked some things up, but I had different priorities and it never occurred to me to ask.
One day, as I was nearing my departure from rehab, I was given a week’s notice for my wheelchair appointment. This is where I would get my bespoke chair with anything I wanted.
It was scheduled for an hour. Much, much too short of time. As soon as you can, ask about your wheelchair appointment and have it be AT LEAST 2 hours. I went over my one hour slot and still needed more time. As a result, my chair is pretty good, but far from what I wanted and what I need.
When you’re in rehab, or at least when I was, a lot of the details are figured out for you. I have insurance, so the insurance company worked with my therapists and the rehab facility to find out what wheelchair supplier I would be working with.
A wheelchair supplier is the company that you work with when you get your wheelchairs. They are similar to a market. You go to a store (the wheelchair supplier) and you want to get something (wheels), you look at their selection and notice that it’s not infinite and only has a select number of brands.
Ask to be notified when the wheelchair supply company is selected. For me, this was a cross between who the insurance company would work with and who the rehab facility worked with.
Once you’re notified of the supply company, IMMEDIATELY ask for a catalog!
This was my biggest mistake. Not even a mistake, it took me over a year to discover that catalogs even existed. Honestly, this infuriates me even today because I could’ve been much more informed and subsequently gotten a better wheelchair.
Because this catalog is coming from your new wheelchair supplier, this will be all of what they can supply (sounds about right). You can talk to your nurses, friends, family, therapists or anyone in rehab about what they think of different parts for your chair. This is both for style and usefulness.
When it comes to deciding what things you want on your wheelchair, it gets down to what type of person you are.
For me, I’m a minimalist and do almost everything on my own. So, I didn’t get push handles or arm rests. I made sure to get a seat belt, though. I also have a carbon fiber wheelchair, so it’s lightweight, which makes doing all the crazy things a little easier.
Look at different parts and ask about their purpose and ways it could benefit you, or hold you back.
Do your research!
The one bit of advice I got from someone before my wheelchair appointment was to request that they make it slim because they typically make the chair a fair bit wider than your hip measurement.
When I went in to my wheelchair appointment, they had a few tester wheelchairs based on my measurements taken previously in rehab. In rehab, it’s kind of like a car rental, you get measured and they go to the used car lot and try to find the best fit they have for you. I think I went through 2, maybe 4, different chairs.
We spent a lot of time talking about wheelchairs because I actually knew nothing. Everything they said, I questioned. You should do the same.
I’ll include questions at the end along with a description of the questions’ purpose.
Anyway, during the wheelchair appointment, remember that these people are here to help you, but you have to help yourself first and be informed on what you want. I made the mistake of telling them “I just want the best.” That’s a lofty request, they don’t know anything about me other than the few things they learned in the first 45 minutes of talking.
In order to help yourself, you need to really think about what you’ll be doing. It’s hard to know the future, but for me, I’m extremely adventurous and I was already planning a trip to Germany just a month or so after I got out of rehab. I knew I wanted it to be lightweight, extremely durable and minimal. It will help if you’ve gone through catalogs.
When I was getting measured, I told them to make the wheelchair slim. Spoiler: they didn’t.
Something I should’ve done is gotten more involved, look at the measurements they’re taking of your body and then look at what sizes they’re writing down for the chair to be. Ask them how much space they’re adding to either side of your hips. This space can prove to be useful, if it’s a rainy day, I can fit an umbrella in between my hip and the chair. However, with this extra width, I struggle to fit through certain doors and maneuver in tight spaces. As an adventurer, I value my mobility and ability to access more places more than I value having extra space to hold things.
Really make sure that you’re getting involved in the measurements they’re taking. Ask them to show you what it might look like. If they plan on ordering a back rest at a certain height, have them take a measuring tape and show you on your body where that is.
Be intrusive. This is a one time thing. You get one chance to do it right. Once you get your chair, if you want something changed, it’s a near impossible task to get it changed (in my experience).
I was told that most insurance companies view the lifetime of a chair to be around 5 years. Meaning that, on average, my wheelchair supplier has seen insurance companies approve of people getting a new chair once every 5 years.
The same chair for 5 years. Let that resonate. Think of how much you’ve changed in the past 5 years.
This chair will be with you for 5 years, you really need to make sure you do this right. No pressure.
Over the next 5 years, you will do more, probably more than you can begin to imagine, if you did know, then you’d be psychic, and I know that you aren’t (because I’m psychic). So, even if you haven’t learned to ascend stairs or do tricks, you will and you need to be ready.
Make sure to get your chair with skills in mind, skills you have now and skills you’ll have in 5 years.
Imagine you’re a kid. You go to the store and you get to buy 1 shirt. You’ll be wearing this shirt for the next 5 years. You’ll get bigger, your style will change and you want it to survive 5 years of use. Every. Single. Day. For. 5. Years.
You want to buy a big shirt, a shirt that you can grow into, not out of.
Don’t get a wheelchair only to have it hold you back from living your life the way you want. Don’t get a wheelchair for yourself now, get a wheelchair for yourself in 5 years. On Team Cosmo, we hate being stagnant. We love trying new things, exploring and being adventurous. If you want to go do something, your wheelchair should be your last concern. When I want to go on an adventure, I don’t want my first thought to be “I probably can’t do this because my wheelchair isn’t made for this, I wish I got one that was built better.”
While I was getting my wheelchair, we had to be cunning. In the room was the representative from the wheelchair supplier, a therapist who worked at the rehab facility, and me. We all talked and laughed pretty much the whole time. We all worked together on finding me the best chair possible. It comes down to what you know or what you find out by asking. I asked a lot of questions but not enough and not all the right ones, my limited knowledge limited what wheelchair I got.
While in the room, with every part of the chair, it needed to be medically necessary. For insurance purposes, since insurance was paying, every time we talked about what I wanted for the chair, we had to think of how it would be medically necessary. This is where the cunning part comes in. In many ways, the insurance company is the enemy, maybe not so much a villain but rather extremely stingy for its own interest, so there will be many battles.
For most of the chair, medical necessity wasn’t even debatable. Things such as my body measurements that dictate the dimensions of the chair. But for things such as carbon fiber, is it truly medically necessary?
This is where we get into the area of making great arguments, something I’m particularly keen on. Make sure to work with everyone you’re with, get an attorney if you need to, and push for getting what you want, because it will ultimately make your life better.
My chair is K5. A quick lesson in lingo: wheelchairs are classified by K-numbers or K-levels. They basically define what the chair is made for. It tells you about the weight class, durability and so on. Similar to how Apple has the iMac or the iMac Pro or Macbook Air or Macbook Pro Air. Those names tell you what performance you can expect from the product.
So, while I was in the room, we were talking about what options I have and the therapist was filling out a form for the insurance company. I never saw it, but I know that it documented every part of the wheelchair that I was getting, all the specifications and the reasons that these were medically necessary. For carbon fiber, well, I have my own car that I get in and out of and I do a lot of traveling. I’ll surely injure my shoulder if my chair is made out of anything heavier than the lightest material available. I also like to test the limits, which means there is always a chance that my wheelchair could break in some way. Even if something is just cool, that right there is mental health and having more self-confidence if you’re chair was to be a certain color. For most things on a wheelchair, there is a viable reason for getting it, you just have to find out why.
Once our allotted time had passed and the appointment was nearing its end, the form was sent to the insurance company.
In my experience and I’ve been told this is the standard, the insurance company will take many months to review and approve or deny specific parts of your chair. Some employee at the company will review each part that you’re ordering and approve or deny it, on the grounds that they want to. This is where you need to hold your ground. It could end up taking a year, a miserable year, but don’t just give in. If they reject one of your proposals, fight it and make sure you get what you need and want. Everyone is on your side except the insurance company, we all want you to succeed and have the chair you want, but damn does it get expensive, and that’s why we’ve been paying for insurance our whole lives, right?
Once the insurance company confirms all the parts of your chair, the wheelchair company will order them, which could take about a month for all the parts to ship. Remember, this will probably be a hybrid chair, with different brands for a lot of the parts, so they’re coming from different places at different production rates.
Once all the parts of your grandiose chair are delivered, they only take a few hours (I was told between 2 and 4) to be pieced together.
Then, the hardest part comes, getting your wheelchair. Because this is soon after you got out of rehab, there’s a high chance you aren’t driving yet. It took me 4 or 5 months to be able to drive (it only took me a few hours to relearn, but the formalities take a long time), but that’s another post for another time.
For me, circumstances couldn’t be more against me. I was at college, I couldn’t drive, and I was taking classes. All my friends were also taking classes, most of them busy everyday. I was also about a 6 hour drive from rehab, which is where I needed to go to get my new chair. On top of that, they were only open during the weekdays (this is even worse if you’re working a full time job) between certain hours.
Because of this, it took nearly a month from when I could’ve had my wheelchair to when I actually got it. This is a problem I encourage you to talk about towards the end of your wheelchair appointment. For me, the wheelchair appointment was the first and last time I saw the representative and discussed my wheelchair until I went and got it. So, if your experience is anything like mine, you have one chance to meet in person and talk about this before it’s too late.
Discussing what will be done when the wheelchair is ready for you and figuring out where you can go. The company that supplied my wheelchair has locations (they call them branches) all around the US, it’s worth asking if you can pick up your chair in a location closer to where you’ll be. Some people travel across the country to go to certain rehab facilities, so having to go back isn’t easy, especially so early on.
In my case, I had flown home and back to college and then gone to Germany and back, all while I had my loaner wheelchair (4 flights total). Loaner wheelchair is the name for the intermediary chair you’re given when you leave rehab and before you get your own chair.
After Germany, I finally had my wheelchair appointment and then I had to find someone to drive me 6 hours to Chicago for a 1 hour meetings and then 6 hours back.
After many inquiries, I found a friend who could drive me to Chicago on a weekday. I had my car up at college with me, so we drove that, leaving later that day, finding our hotel, which was very hidden, then waking up early, going to the appointment and then leaving right after to get back for class.
We were on a very tight schedule and I put my friend through a lot.
There were many times that the restrictions set by others on the things I needed to do carried over to not only inconvenience me, but also my friends who were still gracious enough to help me regardless. It’s extremely important to have friends that are willing to help you in this way. They’re the only reason I am where I am, without them I would’ve had to wait months or even years just to get my drivers license (for using hand controls).
When I finally got back to rehab and went into the room where I got my chair, I was stunned. Almost frozen, as if my mind was so occupied with comprehending the shock that I had no room left for any motor functions. The backrest was HUGE. It was much bigger than the one on the loaner chair I had and it was way too big for me, medically and comfortably. Because I have full core and lower back control, I don’t actually need a backrest other than to keep me from sliding off the back of the chair.
A little detective Cosmo tip: when you look at someone in a wheelchair, the height of the backrest can tell you their level of injury or how much control they have. If the backrest is mid/upper back, they probably don’t have much core control and the top of the backrest is about where the injury level is. This is a rough estimate but you can make your prediction, ask the person and then see how right/wrong you were.
The chair was also much wider than I wanted. I actually had them measure the base of the new chair against the loaner chair and they were the same width. I was not happy about that. When I had gone home, in the loaner, I wasn’t able to get through many of the doors in my own house, the chair was too wide for me and for the doors.
I do like the chair that I have and I’m grateful for it, but this is an account of my experience when I first got my chair, and because I’m honest, I’m telling you how I felt and the problems I had so you can avoid them.
It also looked pretty sleek. But I have to admit, the imperfections casted a shadow on my excitement. There weren’t many, but they were the type that made all the important difference.
My biggest mistake, and I urge you not to fall prey to this all too common psychological bias, was that I accepted my chair anyway.
I regret few things, most of them involve me not speaking up. I was caught up in the moment, tired from being in the car all day and, on some level, probably just wanted to get out of there because I had already put my friend through enough. I remember signing some papers confirming that I’m taking the chair. I don’t remember what they were exactly, but I think it’s safe to assume they were saying that I agree to take the chair as it is and confirm my approval.
Do not do that unless the chair is exactly how you want it. I should’ve told them that I wouldn’t take the chair until the changes were made. I didn’t. And now, as I’m writing this over a year later, I still have these imperfections on my chair. Of course, I’m still alive and I’ve made it this far, so it can’t be all that bad, right? Sure, but it’s possible that it could’ve been even better. I also could’ve taken the time to get these issues fixed, but I didn’t because of my values.
Stay firm on what you want and if it doesn’t meet the standards of what you want/need, don’t settle. Team Cosmo doesn’t settle. I’ve experienced it, it’s not fun and now I’m here to tell you, so you can avoid making these mistakes.
Well, that’s my story and now, as promised, here are the questions to ask at each stage.
When you talk to therapists from start to finish
In the beginning, ask them to teach you about every part of your wheelchair. What the parts are called and what purpose they have.
Ask about some common upkeep that you’ll need to do.
Ask to be shown how to address common or even uncommon problems. Ask if you can take a video for personal use or take notes.
Ask if they have any other types of wheelchairs or parts that you can look at.
Ask how soon they can set up a wheelchair appointment. Having one where you just talk and learn/ask questions is valuable and will make the second appointment (the one where you actually order the chair) go faster.
When you find out who your supplier will be
Ask for a catalog from the company for all their wheelchairs and parts (that apply to you). This might be a huge catalog, it might be digital.
Ask if there are any other wheelchair suppliers that you could work with and why this one was chosen. It’s good practice to question everything so that you can have the opportunity to make a better decision
When you find out when your appointment will be
Ask for the appointment to be at least 2 hours. If they can’t do that, ask for 2 appointments, and have the first one sooner.
Ask about what the general procedure will be, so that you can be prepared to talk about what parts you want.
During your appointment
Ask the wheelchair supplier a lot of questions about their service, such as:
Do you have any branches near me?
What times are you open? (make note that if you plan on having a job, their open hours are important)
What is the procedure if the insurance company rejects one of my parts? (and how to fight back and not give in)
What is the procedure for getting my chair after the insurance approves it? Where will I pick it up? What times can I pick it up? (think about how this might affect you if you have to travel the country to get your chair on a Wednesday morning)
(if you don’t know what to get) Based on the things I plan on doing, what have you seen similar people do/get?
(when they take measurements for the dimensions of the chair and the parts) Can you show me what this might look like on me? (they could outline a square to show you the size of your seat)
Which products have the best warranty?
Which products are known to not work or be the best? (this is important, the brakes that I have on my chair are known to be terrible)
Which products are known to be the most durable and or require the least amount of upkeep?
Ask if there is a place to see reviews for some products.
(after choosing all the parts for your chair) How familiar are you with these products/brands? Do you know if there might be any better options that require less upkeep or are more durable?
After your appointment
Keep in contact with the supplier and ask for updates on the approval process and once the items ship, ask to be notified when all the parts have arrived.
As soon as the insurance approves the parts, the time they arrive after being ordered is unknown, still, ask to talk about setting up a time to get your chair.
Talk about where you can pick up your new chair, make sure that it is at a branch location close to you and at a time that works for you.
I recommend buying some fast bearing for your front wheels, the bearings that come with the chair are cheap and slow. Have a look at these bearings and bring them with you when you pick up your chair.
When you get your wheelchair
Once you arrive, look over the chair and make sure it meets your standards and expectations. If anything is wrong with it, immediately tell them and ask what can be done to make the changes.
If all the parts are good, ask about how it was built and what tools were used, i.e. what tools you should have to do maintenance.
Ask about how to fix certain issues, such as if the front wheels become loose and start to wobble when you go a little fast.
Ask about how to change the wheels in the front and how the chair comes apart.
Ask how to fix any of the parts if they break and keep the chair from disassembling properly.
Ask about the procedure if the chair breaks in a major way and needs to be professionally fixed.
Ask about the procedure for getting new parts if one of them breaks prematurely.
Ask about possible modifications that can be added to the chair.
Ask them to measure the chair when it’s assembled and weigh it when all the parts are on it. Take note of this, it’ll be important for travelling.
Look at the bars on the wheels that you use to push, if they’re too far out, ask them to be moved in to make the chair a little slimmer.
If you remembered to bring your bearings with you, ask to have them put in.
Ask for the warranty information for the different companies that correspond to each part. That way, if a part breaks, you’ll know which company to call to claim a warranty on it.
I really hope all of this helps. It’s a lot of information, but this is one of those times that you get once chance to do it right.
This is how my brakes were just a few weeks after getting the chair.
Immediate action item: Write these questions down in your notebook and start asking right away!
Summary:My experience when I got my first wheelchair was less than perfect. Luckily, I learned a lot from it and now you don’t have to make the same mistakes I did. Basically, you have to ask a lot of questions. The right questions. And take a lot of notes!
Overdeliver: One thing you might not think of is the backrest. When it comes to the backrest, you need to really consider what you’re getting. Think of the material, if it’ll be breathable during the hot summers or not (mines not). Think about whether or not it has lumbar support to help you avoid back problems. Another big part is the height. How high up do you really need the backrest to go? I recommend challenging yourself to get it just a little lower than you need so you build up some strength. Another important thing to consider is whether or not the backrest goes to the bottom of the chair. You absolutely want the bottom of the backrest to go down to your seat. If there is a gap, you might be showing the world more than you want to, and in the winter, cold winds will get to you. Make sure to get your backrest so that it only goes up as high as you want and it goes down all the way.
Let’s make this quick. I should be studying right now but I became so enticed with the idea of sharing this that I couldn’t resist. I also used a very grainy picture and I’m not ashamed.
The list is simple. You have 2 sections. One for what you will do in a wheelchair and one for what you will do when you are out of a wheelchair.
PS, if you’re not in a wheelchair, this applies to any dichotomy in your life. Maybe you have a broke leg or something that has a before (right now) and after (in the future). It can also apply to being in quarantine.
Why do you need to make this list?
There are many psychological reasons to do this type of thinking. We’ll talk about the benefits of this list along with some explanation of what this list really is.
This list is ever-growing. I call it the Dual Dreams. But don’t let the word “dream” confuse you, these are actual goals that we will actually achieve. Convince yourself of that right now. Before you even know what this list really is, it’s important that you let the benefits of psychology take over and truly believe that this list is not some cozening list full of pretentious, drivel hopes that we retreat to in tough times so that we can take our minds to a mythy world. This is about real life, not mystical fiction.
You can also call it the “twain aims” list if you’re feeling fancy and the rhythm is within you.
Here are the two main benefits that I get from having this list, and there are probably a lot more.
I would even recommend printing this list and posting it up on your wall next to your bed or somewhere in sight.
The first benefit is that it will give you hope. When things seem down, maybe you’ll never walk again, take a good look at this list, visualize yourself doing these things and remind yourself that it is your goal and your mission to walk once more. Don’t allow this list to dispirit you, instead, have it imbue you with excitement for the future and remind you that you CAN and WILL do these things. Even if everyone is against you, you will prove them wrong!
The second benefit is that it makes you seriously consider and challenge what you can do NOW. Never get caught up in the pernicious feeling that life is over and you can’t do anything anymore. Maybe you won’t be able to achieve the “Things I’ll Do When I Walk” list right away, but that’s why we have the other section. You are forcing yourself to challenge what you can do while in a wheelchair.
This list excites me beyond exposition. It reminds us that we can still achieve a lot while we’re in a wheelchair and that life is pliable, we shape it with our actions and mind. If you perceive your life as over, everything will soon reflect your philosophy.
How do you actually construct this list? What does it look like?
I recommend making the list of things you’ll do when you walk, or gain some degree of ideal mobility back, first. Make this list ample. Be creative and think big. What else will you do? Think small?
After you make this list reflecting your wildest dreams, explicate and challenge each item, give serious thought to whether or not this is something that can only be done after you’ve recovered.
Sometimes, I’ll think of something new that I really want to do and write it down in the “recovered” section but then realize that I can totally do it this week if there weren’t issues with money or some learning curve. So, I take the ambition and move it to the other side.
[Aside] This list actually started off as just a list for what I’ll do after I walk until I realized how powerful it will be if I add the “while injured” section.
This is a real list, some of the things on this list will be humdrum, but they are nonetheless important to us. You may not think that playing volleyball is all that grandiose, but for me, it’s something I really enjoy. I’ve never shared or told anyone about this list and now I’m going to reveal it to the world. Remember that this is MY list, based on what I like and how I want to live my life, we will have big and small things, so long as they are important to us, and we intend to complete them as if it’s life’s dictum.
Here’s what MY list looks like. There are some things that we could belabor on whether or not they should be on the “Walk” side of the list, but we won’t.
Remember that the things on the list are for you! (I’m saying it a lot because it’s important)
For me, I know I could ski while still in a wheelchair, and I might. But when I say ski, I envision the type that isn’t in a wheelchair/adaptive skis, and that’s the type of skiing that I want to do. I also want to live in an RV and drive around. That one was in the “recover” section until I realized that what I envisioned could easily be done in a wheelchair and it wouldn’t impact the reason I’m doing it (explore, travel, learn and have fun). I could technically travel to Greece in a wheelchair, but I wouldn’t be able to do the things I want to do (lots of stairs in Greece). I think you get the point.
By the way, this list is in an iPhone-only app called “Bear”
Immediate action item: Make this list right now!
Summary: Create a list with two sections: Recovered and Injured, then write what you’ll do for each part of your life. This is a must have list for anyone in a wheelchair. If you’re not, then I still recommend making the list based on whatever dichotomy is present in your life. It’s helped me a lot!
Overdeliver: Even though I’ve kept this list private, until now, I have gotten involved in the communities for most of these topics and then I inform people of my ambitions (naturally, in conversation) and they are always wanting to help. Take flying for example. I went to EAA Oshkosh and now I know many pilots or retired pilots who want to help me and see me succeed. I’m very grateful for all of them and the only thing really holding me back is the money and the ability to prioritize the apposite time commitment to flying. Remember that everything you’re doing and not doing (within your physical limitations, but even that’s debatable) is a representation of how you prioritize.
PS: PS can be Post-Scriptum or Pre-Scriptum, language is malleable
At the beginning of my journey, I was in the hospital (of course), and I was extremely uncomfortable with everything. The thought of a catheter makes anyone squirm, even at this point, over a year after using catheters every day, I try not to think about it.
I’m not as manly as you might think. For the 6 days, I was in the hospital after my surgery, I hated when I had to “cath.” I would take a pillow and put it over my face and tell the nurse to just tell me when it was over. Even though I couldn’t really feel it, I was afraid that I might.
Just a few days before, I was walking and NOT using a catheter, I didn’t even know what a catheter was.
I took it to an extreme. By the third or fourth day, I was down from four IV’s to just one. I didn’t need much of any medication. However, I was so terrified of being able to feel the catheter that I still took pain killers. I demanded it. I didn’t need them at all, though.
That’s how scared I was about feeling the catheter.
Right now, I’d go back in time and slap myself.
Don’t make the same mistake. For using a catheter or anything, really.
When I went to rehab a few days later, I knew something had to change. I realized that I can’t be scared about cathing if I expect to recover and gain my independence back.
The very first day, the nurse who came in, his name was Caesar (his name is Caesar), I told him that I need to cath (it was a long ride from the hospital to rehab) and that he needs to teach me how to do it.
Two mistakes I made in the hospital:
I didn’t take responsibility for myself and I avoided doing what was necessary
I didn’t learn how to be responsible for myself
Some of you might not physically be able to cath, that’s totally fine.
The point here is that you have to do everything you’re capable of doing.
In the hospital, I could have asked the nurses and doctors about how catheters work, best practices, and how to do it.
Visualize what life will be like once you’ve recovered. For me, it involves living a life of freedom – traveling and exploring. I might buy an RV and live a life of touring the country. If that happens, and I hope it does, I will probably have to poop in the woods at some point.
When I was scared of cathing, did I expect someone else to do it for me my whole life, when I absolutely can do it for myself? Honestly, I can’t understand why I was even okay with someone else doing that for me.
It gets a little worse.
A catheter is only for #1. What about #2?
This next part is 18+
Don’t continue reading unless you’re prepared to feel uncomfortable.
If you’re not 18, but in a wheelchair, then you’ll probably be familiar with this, so for anyone in a wheelchair, this is another day in the park. (Not that it’s nearly as pleasant).
For me, and it may differ drastically for everyone, this is called the bowel program. I came up with many names, such as “poopy program” or anything that didn’t sound so medically uptight. After all, I already had a finger up my ass.
It took me much, much longer to accept that I had to “manipulate my bowels.” I don’t remember when I first did it myself, but if you’re patient and a fast reader, I probably mentioned it in one of my Instagram posts.
This is one of those things that I look back and shake my head a little. I don’t remember if I ever pooped in the hospital, but before I tell you about my first time doing this myself, here’s how it worked in rehab when I didn’t do it for myself.
At a set time every night (rehab was very regimented), I would grab my fancy hospital bed remote and press the button I was all too familiar with. The SOS. The help button.
The nurse assigned my room would come in. We always bantered and had good conversations. They would grab the incontinence pad unless I already had one under me. It’s pretty much a square diaper. I would take off my diaper. By now, the door was shut and my Mom had left the room, thank God.
The first step for the nurse was to put on some medical gloves, then some medical lubricate on their finger and while I lay on my left side, go in and clear out the colon. Then, with the “ready to go” stuff out, we wrapped it up in the incontinence pad and like planned magic, there was another pad underneath. Part two is that a laxative was put in and the nurse left, waiting for me to call 15 minutes later to take the second incontinence pad, wrap it up and we’re done.
Nurses were both men and women. One time, I played this song as one nurse came in. Luckily, she thought it was funny. Even when a nurse is coming in to put their finger in your butt and pull out poop, you can still be lighthearted.
This went on for a lot longer than it should’ve. If you’re reading this while you’re in rehab or even still in the hospital, then I’m happy.
I want this message to get to as many people as it can early on.
This was something that I just couldn’t accept doing for a long time. It was outside of my comfort zone. This was astronomically out of my comfort zone. I didn’t expect it to be done for me forever and again, I was completely able to do it for myself. Because of that, I can’t imagine why I was so much more comfortable with someone else doing this.
The first time I did my own bowel program
I had prepared. The past three or four nights, I wasn’t just lying on my side in silence. I was asking for gruesome details. I knew that I needed to do this on my own. In rehab, they also have standards they hold you to. They expect you to progress and have thresholds for how long you can be in one spot. I had reached the limit for how long I could avoid doing this.
It was the nurse that I carelessly whispered who came into my room and told me to get up and do it myself. Instead of doing my bowel program on the bed, which would’ve been a lot harder, she had me get into my wheelchair, go into the bathroom and transfer onto the toilet commode (a cushioned chair with a hole in the middle). At this point, she was giving me the tough love that I am more than thankful for. I live for tough love. She wouldn’t believe me that this was actually my first time and that I still didn’t know what I was doing.
I double gloved. I wanted to put as much distance between me and this process. Two gloves was the best I could do. After that, I put on the lubricant and manipulated my bowels.
A quick note: while I was doing this, the nurse told me that sometimes this will cause people to pee and that sometimes people peed on her! It takes a brave person. She was still helping me and making sure to coach me through this unthinkable process, so, she was sitting right in front of me. You can use your arm to point “it” down while you do this (doesn’t apply to women).
Ever since that day, I’ve been doing the bowel program myself. I only wish that I had done it myself a lot earlier than I did.
Immediately actionable item: Ask yourself, am I avoiding doing something that I shouldn’t be? Set a plan to do it today, or begin the process today.
Summary: Don’t hesitate cathing or your bowel program. Do as much as you can early on. You’ll have to do it on your own at some point. I waited way too long to do some things on my own. It takes a lot of courage, but it’s something you need to do.
Over-deliver: A lot of people won’t give you the tough love you need. They’ll give you the easy way out and help you if you ask. If things seem too easy, ask for tough love.