My experiences so far are based on three wheelchairs: a large power wheelchair (Perimobile M300) (since 10/2017), a folding manual chair with a raisable footrest and headrest (used as a backup since 12/2017) and a Falcon folding power chair as my new backup (as of 3/2021) with an added headrest and footrest (not included). I will now donate my manual backup (which I hate).
I am going from the experience of my own wheelchair needs. I am able to transfer and walk short distances. With my ME/CFS I need a recline and headrest to support my upper body. I don’t have the strength to hold up my torso and head for very long. The raisable footrests help with orthostatic intolerance (another thing that happens with ME/CFS). You need to find a wheelchair that works best for you, but my guidance here is based on what I have and my own abilities and challenges.
In the House and Outside
Some of us just need the chair for outside and some of us need the chair all the time. My personal setup is to leave the wheelchair in the wheelchair van or garage and use a rolling office chair in the kitchen for cooking. I can walk some so I can get from room to room and sit in a chair or lay down in each room. This is fairly common. Don’t feel like you don’t need a wheelchair because you can get around the house! If you can’t safely walk far outside the home, you need a chair, or at least a scooter. If you are systemically weak so that your arms or body as a whole are compromised, you probably need a power chair. You should be able to cover as much ground as a healthy person walking if you have the right chair for you.
I cannot speak to using the wheelchair full time inside the house from experience, or for the experience of not being able to transfer on one’s own, but I hope if this is the case for you that some of this blog will still be useful.
I am based in San Francisco, so my experience with chairs relates to that as well.
Getting a Wheelchair
For most people, going through your doctor and getting a wheelchair evaluation is a first step. They evaluate fit, ergonomics, needs, your house, etc. Often this step is done through insurance, and keep in mind that insurance companies want to say you need the least expensive thing they can get away with. For many conditions, for people who are not average size, and for manual chairs which come in more sizes this is probably a necessary step and even if you decide not to go through insurance it may help you understand more about what you need. You may need a custom built chair.
Working with insurance
Insurance sucks. I have great insurance. I have a doctor fully prepared to back me up. Even with that, in the very best case scenario it would have taken me a minimum of three months (according to the insurance company), and more likely a year to get my wheelchair through insurance. You need a doctor’s recommendation with an extra doctor’s appointment just for that. Then insurance company sends out two specialists (a PT and a “lifestyle evaluator”) to your house to decide for you what you need (on their schedule- the first appointment available for mine was three months out). Keep in mind that the insurance companies aren’t familiar with some conditions like ME/CFS (or don’t want to be) and might have no basis for understanding your needs and may not account for those needs. Then if you have really good insurance and they agree to do it they pay some percentage (in my case 80-90%) of the model they think you need. A lot of insurance companies will say you don’t need a wheelchair at all if you can walk short distances (10-30 feet) inside the home. This isn’t because it’s true, it’s because they don’t want to spend money. They generally only cover FDA approved chairs.
My Solution: EBAY. I got my Perimobile M300 used with only 20 miles on it on EBAY for less than what I would have had to pay after what insurance covered and it arrived in under two weeks. I’ve since checked back and now nearly new ones like mine are selling for half what I paid four years ago (which makes it way cheaper than a copay with great insurance). You can also get them from dealers. They raise the prices for insurance buyers, but as soon as a model has been on the floor too long it sells for 20% of the full price. Used ones are even cheaper. I suspect this is true for other types of chairs too. Thankfully I did not need a custom chair.
If you do manage to get one through insurance, they all work differently, but some will replace your chair every ten years. Most will replace your battery every year and cover some maintenance. Call them up and figure out what you need to do, look at the deductibles and decide if it is worth it for you compared to going for a used one.
There are Abilities Expos like this one which help you find the right chair for you.
Types (big power chairs, foldable power chairs, manual chairs) Pros and Cons
Big power wheelchair Pros and Cons:
- If you are too weak to push yourself or your whole body is compromised in some way, they do the work for you.
- They are very comfortable. With ME/CFS and many other conditions that might put you in a chair you become uncomfortable and exhausted more easily than most people and need full support. A chair like this will give you that. I could not stay in a less robust chair all day, but at the end of a very long day in my big chair I’m still doing pretty well.
- They will go over rougher terrain. They will go over bumpy lawns and dirt roads and wet slopes. They will handle some snow.
- There are many models that fully recline. You can actually lay down fully in the chair and sleep if you need to. The recline also tilts the seat so you aren’t sliding off the chair.
- They go pretty fast (up to a gentle run or brisk jog- way faster at top speed than the foldable ones). I feel this is a safety feature when crossing streets.
- the footrest is solid and fully supports you.
- The Perimobile and similar large power chairs require real wheelchair transport to get anywhere. You can’t fold it up and toss it in the trunk. If this is your main chair you will probably need a wheelchair van.
- They fit less easily into restaurants and things. Generally people will make it work, but it’s harder.
- If it gets stuck it is 350+ pounds. I got stuck in both mud and sand in Morocco and thankfully there there are always lots of friendly people to haul me out.
- Price. They are the most expensive. *Though you can get one used for a lot cheaper and then they can be about the same or less than a new folding power chair.
Foldable Electric Wheelchairs
- If you are too weak to push yourself or your whole body is compromised in some way, they do the work for you.
- You can fold it up and put it in a trunk
- You can pack it into a case for airline travel, meaning it is not likely to get damaged.
- You can remove the controller for airline travel and even without the case it is less delicate than a big chair.
- Smaller. You can maneuver indoors and in tight spaces more easily.
- While they generally don’t come with headrests or footrests, you can add these on to some models.
- A handful of models can recline (but the seat stays in place in most models).
- If you get stuck you are easier to get out because they only weigh around 50-70 lbs.
- Less expensive than large power chairs (at least new)
- In some models like the Quicknmobile chairs you can easily swap out batteries and charge extras. You can run on one battery while charging the other, or run on two while charging a third. My foldable Falcon with the two batteries has a longer range than my large Perimobile M300 by 4-10 miles depending on who you ask. Battery range will vary chair to chair.
- Less comfortable than a large power wheelchair.
- The seat does not tilt with a recline in most models (the Quickie tilt models do).
- Recline is much more limited than in a large power chair. The large chairs will go flat, these just go back a ways.
- Less fast than a large power wheelchair.
- Generally less able to handle rougher terrain than a large power wheelchair.
- They tend to slide down if going across a hill (sideways instead of up or down) where a large chair will use go straight across without trouble.
- They are not as safe in rainy, snowy or icy weather as a big power chair (specifically not designed for those conditions at all).
- The footrests that raise up aren’t always as supportive as the footrests in a power chair. For me this means I end up using muscles I shouldn’t use and wearing myself out.
- If you can propel yourself there is so much more you can do! There are dancers and daredevil stunt riders in wheelchairs!
- You can get one fit exactly to you.
- There are many models to chose from that fold up and fit in a car.
- There are models that have a recline, footrests and headrest.
- If this is all you need and you are able to propel yourself there is an incredible range of models that can handle various terrains and situations.
- if your condition means you cannot propel yourself you are dependent on others. This becomes dehumanizing in ways that are hard to describe without experiencing it. With the wrong person pushing you, you become stuff. You can get left places when you are in distress. It’s awful.
- less comfortable compared to a large power chair.
- The recline doesn’t tilt the seat, so you can feel like you might slide off if you recline very far.
- Most models which are built to be pushed rather than self-operated don’t handle rough terrain well.
- The footrests that raise up aren’t as supportive as the footrests in a power chair. For me this means I end up using muscles I shouldn’t use and wearing myself out.
- Random people will try to push you without asking! One lady solved this by making spikes for the handles of her chair which she now sells on etsy.
You can get a chair to measure or for special circumstances. This is most true for non-power chairs, but can be true for power chairs too. Here is fit advice. This is likely a conversation with your doctor and possibly your insurance company. For me the most important things were power and recline and there are limited fit options there, but the standard options were adjustable in terms of leg length (my legs are very long) so fit wasn’t an issue and I was able to get two standard chairs (one large power and one folding power for when the big one isn’t an option) that work for me.
For power chairs: if you are heavier/wider many standard chairs come with wide options or wide kits. If you are very tall, very short or have more specialized needs you may need a custom chair. I distrust what insurance thinks you need. They will always try to cut their costs regardless of your needs. …but maybe they can help you measure.
Wheelchair Vans see the section at the end of the “on the ground” page.
More Wheelchair Notes:
When you get a wheelchair, read the manual. Make sure you know how to lock and unlock the brakes, fix loose things, lock and unlock the joystick, shut down the battery and anything else that might come up. Spend some time familiarizing yourself with the chair to minimize nasty surprises.
Power on the Power Chairs
- Know Your Range My Perimobile M300 has a range of 10-17.8 miles depending on who you ask. In my experience it makes it (barely) through a very full day and evening of Disneyland, which is according to various internet accounts about 11 miles of walking (many people walk more like 7-10 miles there). My Falcon is supposed to cover 22-26 miles on its two batteries, so I can’t imagine using a full charge in one day. The cool thing with the Falcon is you can pull out one battery and charge it while using the other battery. If you are traveling with other people who have Apple watches or Fitbits or similar that can track miles walked they can help you keep an idea of where you are in your range.
- Watch your battery At first you will probably get stuck once or twice while you figure out how much charge you’ve really got to get back. If you are out for a full day bringing your charger with you is a good idea.
- If you aren’t using your chair every day, don’t charge it every day. The battery wears out with each charge cycle. Obviously if you are using it every day, charge it every night. If you do this your battery for a big power chair will last about 1-2 years before it needs to be replaced. When you notice the charge not lasting as long, it is time. I charge mine every night when I’m traveling, but during the week I only use it a little on weekends, so I charge it every 1-3 weeks. Somehow my battery lasted 3.5 years! My Falcon (foldable power chair) batteries are supposed to last 3-4 years.
- Never forget to bring your charger with you on a trip!
- Make extra sure when you plug in that you are really charging
- I don’t know about other chairs, but with my Perimobile if it is out of batteries and you plug it in for a very short amount of time it will say it is fully charged very quickly. It lies. It is fully charged for doing what it is doing now, which is nothing. Drive it for a few minutes and it will go right back down to red. Look at your manual and see how long a getting fully charged actually takes. Plugging it in for the night generally is the thing to do with the big power chairs. My foldable charges both batteries fully in 4 hours.
- Go slow at first. If you use high speeds when you are still getting the feel of the chair you will crash into people and things. Stay in low speeds indoors (1-2 of 5 settings).
- If you store it for a length of time, shut off/disconnect the battery.
I was not good about maintaining my chair. I got it lightly used in 2017 and it was made in 2016. I just got a “regular” maintenance check today for the first time (3/1/2021). Up until then the only maintenance I’d done was fixing broken parts from flight damage. They were horrified. My wheels are falling apart (I called for maintenance because of a dreadful wobble) and apparently batteries should be replaced every year! It must have lasted so long because I am only able to get out in my chair on weekends, and often not that. Trips are the majority of my usage. Still, I was lucky to not have it completely fail me in some place where I couldn’t get it repaired. So the take away is: get your wheelchair checked out every year. It might cost you, but getting stuck somewhere and trying to repair it in a random place will cost more.
Many repair companies will come to you so you aren’t without your chair for long.
Also, always carry tools (in my case allen wrenches) to help you repair your chair if things come loose. I keep mine in the bag attached to my chair at all times.
Until you get a good idea of what kind of incline your chair can take you should find someone to spot you. Your manual will give you a guideline for how steep a grade the chair will take, but it may not help you when you are looking at a hill and trying to judge (what exactly does a 10 degree slope look like?). Also, being reclined may increase the chance of tipping when you are going uphill. I live in San Francisco, so this is a regular concern.
You can buy bags that clip on to the back of your chair. These are great, especially if you are with other people who can get things out of it and keep an eye on the bag. Don’t put anything valuable that someone would want to steal in there. It’s a great place to keep your charger and whatever tools you might need to repair your chair, a blanket and a hot water bottle.
Some chairs (like the foldable power chairs) have space under the chair for a bag and the place that sells the chairs will generally have them or it will come with the chair.
There are also little bags that can go under the arm of your chair that are big enough for a wallet and a cell phone. Very handy.
What I don’t recommend is hanging regular bags off of the arms of the chair. It’s very tempting but you will destroy the bags and whatever is in them the first time you forget they are there when you go through a tight doorway. I’ve killed two iPads this way. I just don’t do it anymore. Instead get a bag for the back/bottom and a regular bag (purse or small messenger bag) that you can put over your shoulder and keep on your lap/side if you can.
Will get put on your lap and constantly fall off it in a wheelchair. I recommend getting a phone case with a strap you can put around your neck. Things like bandolier are nice because it is good quality and it holds a few credit cards and the strap unclips, but knockoffs have the same functionality for a third of the price. I leave my strap by the door and have it unclipped in the house.
I have a pillow I always have with my chair. The headrest on the perimobile does not support my neck properly and it wiped me out at first, so I got a pillow. I kept dropping it until I attached soft velcro to the chair’s headrest (so it doesn’t catch your hair) and the sewed the scratchy side to the pillow. Here is my pillow case, pillow, and with the velcro I got both the sewable (for the pillow) and sticky kind (for the chair). I did sew put a few stitches into the top of the chair velcro with button weight thread. This has worked great for years. The Falcon’s headrest is super adjustable and I don’t need a pillow with it. It depends on the chair.
If you need a power chair and you can feed yourself you want a cupholder. Trust me. Get one. Stay hydrated. A lot of us who are in chairs are there for an overall health reason (rather than an injury) and we need to keep on top of hydration. Beware of bumps and hot drinks though! That thing you can stick in the sip-hole is useful. I attached mine underneath the non-control arm and it works great. It is designed to go on top but that didn’t work with the perimobile. I use the same one on the top of the Falcon’s arm.
The little “beep beep” thing built into the power chairs is totally useless. I got myself a big clown horn and attached it to the bottom of the arm with the straps in the cup holder and a zip tie. There’s something about it that is funny enough to be excused its “rudeness” by most people. You will find that people will often not move, and when you say “excuse me” they won’t even turn around. You may not have the energy to raise your voice. The horn is awesome.
If it is cold outside and you are with people who are walking, you will be colder than they are. Their bodies will be generating heat from the exercise of walking and yours won’t. At night or in cold weather always carry a blanket in your bag. Fleece is nice and collapsable. I also keep a hot water bottle in my bag. Any cafe can fill it up for you. Make sure you get one that has a metal in the neck to seal it because the flimsy ones that don’t can pop open and spill hot water on you. You’ll want a cover, and some of them come with them.
You may want to light your chair for night time to make it more visible to both cars and pedestrians. Going somewhere like Disneyland or a concert at night with a dark chair is a real issue. People crash into you enough in the daytime!
DON’T plug lights into your chair. The manufacturers all say don’t do this. Use batteries.
There is a lot going on here. In the wheelchair you can be seen as powerless, but also can be seen as homeless, and we (in the US) don’t treat our homeless well. When you dress extra casually you can get treated badly by people because of these two things, especially when you are alone. I have countered this by wearing very vibrant 1940’s-50’s era clothing. It’s obviously dressed up and put together and has a power of its own. It feels confident and it delights people. It helps them see the person more than the chair.
There is power in good dress which offsets the impression of powerlessness that people get from the chair. If you find a dressed up version of your own style, you may notice a big difference. Getting suits that fit for wheelchairs is hard, but there are some companies out there. There is also adaptive clothing that is easier to put on than regular clothing. I tend to focus on the parts people see most in the chair (chest up, knees down). I keep my clothing comfortable even if it is more dressed up because anything that makes me uncomfortable adds to my mental load and can wear me down. For me putting extra energy into dressing costs me, but the energy I get back from being treated nicely instead of badly makes up for it. I don’t always have the energy to project confidence in my body, but the clothes can do it for me.
One exception for women in particular is the doctor’s office. I have heard from a number of women saying that when they are dressed up nicely their doctors don’t treat them as seriously. So for the doctor’s office apparently less put together is more effective for being heard and treated seriously. I feel very lucky in my own doctor. I can’t imagine her doing that.
Stigmas and Self Image
A message to those who have limited mobility and are on the fence about getting a chair.
This is rough. I used to be the strongest, most physically capable person in the room (gymnast, dancer, martial artist, circus artist). Then suddenly I had trouble supporting the weight of my head for more than minutes at a time. If I hadn’t gotten a chair I would have been stuck at home, mostly in bed for the past four years and probably the rest of my life. I have since improved some, but while I can stand and walk for short distances, my ability to do anything is essentially on a timer. It’s hard to make the transition to accepting what you can and can’t do now, but to get the help you need to be more functional, that’s what you need to do.
I can walk short distances around the house now, but to stay within my energy envelope and not make myself worse I need the full support of the chair outside the home. To be able to travel and go outside I need the chair, and the chair gave me those parts of my life back. A lot of us can do some walking, but walking very far is out of our range. Society seems to teach us that wheelchairs are only for people who are paralyzed on have damaged legs. It’s just not true. There are so many reasons to need a chair! If you can’t safely walk very far, you need a wheelchair to get out in the world.
It’s hard to get over the mental block of needing a chair to live a full life, to leave the house safely, but not wanting to be seen by oneself or others as disabled. All I can say is that accepting where you are at right now gives you more power and freedom now. If you get better you can sell it and help someone else out.
It takes some adjustment to be seen as disabled, but I think what you get is worth it. For some of us (who have invisible conditions like ME/CFS where we suffer alone at home), being in a wheelchair makes it more obvious to others (even friends and family) that we need support, and that can help them be more supportive, which helps overall.
Things that happen when you are out in a chair– yes they suck, but knowing what to expect helps.
People think you’re homeless and they don’t treat homeless well, especially when you are alone. They will follow you in stores or be suspicious of you if you ask a question on the street. I used to wear very casual clothes all the time, but I have found that I have to dress way up when I go out to be treated decently when I’m in the wheelchair.
Sometimes it is easier to stand for a moment to do something than to try to do it from the chair, and some of us can do that. You get nasty looks for that. People seem to think that you only need a wheelchair if you are paralyzed. It’s just not true. Many wheelchair users can walk short distances. You need a wheelchair when you can’t safely walk far. I have printed out little cards to give out to people that explain what’s going on when I get those looks but I don’t have the energy to educate.
There are some people who will try to take advantage of you because you are in a wheelchair. There are people who will treat you like you are stupid because you are in a wheelchair. People who will aggressively tell you you don’t look like anything is wrong with you. People will cut in front of you in line for some reason. They will lean on your chair and it shakes you. There are a thousand little things you will encounter every day that suck. Even with all this is is totally worth what you get back.
People will also be very helpful, sometimes in unhelpful ways. At first this can be overwhelming (especially if you have sensory issues). You will get used to it and find your own ways of quickly communicating what you do and don’t need to stop the deluge of helpfulness or at least channel it in a way that works for you.
Going out with a companion in early days if you can will help buffer some of this. They can field the people, but in my experience you don’t get as much of this when you have someone else with you.
Another thing that buffers a lot of this is dressing really well. When you are dressed more “powerfully” people treat you with more respect. It helps people see the person before the chair. I do what I can to stand up for myself and educate when I have the energy for it.
I promise you, what you get back when you can safely leave the house and even travel is worth all of this. Make the most of it!
Chair Costumes (for fun!)
I made slipcovers for the chair arms with velcro closures to hold the lights. I added velcro on top (soft side) so I could attach costume pieces. They also make the arms more soft and comfortable. I made a chair cover that mimics the rattan chair Morticia Addams uses to compliment my Mortica Addams costume. The shape is held by the same stuff you put in hoop skirts (flexible metal) and the shape of the fabric. The bottom is just loose and tucks around the cushion. I also hid LEDs in the arch of the chair for nighttime visibility.
You can have fun with your chair. Why not?