Living with Your Wheelchair

(Maintenance, accessories, experiences, tips, etc.)

a family in front of the Disneyland castle at night.  The mother is in a wheelchair in the center and the daughter to the left and husband to the right.  They are hugging.

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 if it has one, shut down or remove the battery for travel (remove for lithium, shut down for others), how to detach the joystick for flight and anything else that might come up. Spend some time familiarizing yourself with the chair to minimize nasty surprises.

Maintenance

I was not good about maintaining my chair at first. I got a 2016 Perimobile M300 lightly used in 2017 and it was made in 2016. I just got a “regular” maintenance check up for the first time on 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. If you got your chair through insurance, insurance should cover the maintenance.

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.

Clean it.

Power on the Power Chairs

  • Know Your Range My Permobile 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.
  • Don’t leave your chair unused or uncharged too long (this can also kill the battery). The manual should have a guide on this.
  • 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 Permobile 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 charge 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.

Cushions

They MATTER. If you spend all day in the chair you can develop sores which can become infected. It’s not pretty. Also back issues can be a problem. Getting a good cushion is HUGE. It really depends on what your condition is, but Roho ones are generally great. If you need more support they have a air+ foam combo. Less support, just air in quadrants. Shop around and make sure you get something that works for you. When you are getting your chair, talk with the occupational therapist/pt/wheelchair expert who measures you about cushions that would be right for you.

Hills

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.

Foldable power chairs are mostly designed for indoor use and will not handle the smallest slope in the rain. Very dangerous to try.

Bags

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.

Your Phone

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.

Pillow

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.

Cup Holder

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 a cheap one underneath the non-control arm and it worked ok, but I had to replace it twice since it bent. 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 (where it doesn’t bed because it’s on top as designed). I finally broke down and got a fancy one (RAM self-leveling) for the perimobile on ebay. It is actually designed for the chair and it goes in the track system under the arm and works way better.

A Horn

a clown horn and cupholder attached to a wheelchair 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 velcro straps. 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.

Heat

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 if you are in a power chair. 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.

Lights

You may want to light your chair for night time to make it more visible to both cars and pedestrians. Some chairs come with lighting or you can buy lighting kits from your wheelchair supplier, but you can also DIY. Either way, have SOMETHING. 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!

Here is my post on lighting up your chair. Also an Instructible (step by step how-to) for LED chair sleeves.

DON’T plug lights into your chair. The manufacturers all say don’t do this. Use batteries.

Clothing

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.

How do I go shopping?

My solve is to get a basket and put it in my lap. When it is full I go to a cashier and ask them to hold it, repeat until I am done. Then get help from the cashier to the car.

I can stand, but I have learned that if people are around it is easier to ask people to hand me things that are high up than to deal with the shocked prejudice, hostility and ignorance if I stand to reach something.

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). One thing that happens to people in push-chairs with handles is that strangers randomly push them. There is a solve for this (spiked handle covers). 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!)

a woman dressed as Mortica Addams (black wig, tight long black dress, headless rose in hand) sitting in a wheelchair which has a covering designed to look like a ratan chair.
Photo by Greg Autry @gregautry.cga

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?

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