Advice for a new/soon-to-be paraplegic?
September 17, 2013 6:22 PM   Subscribe

I have been disabled for years, but there is a good chance I will be completely paraplegic soon. I have spinal cord cancer, which was treated with radiation, chemo and the removal of the tumor a few years ago, but it seems to be growing again. I'm going to have another MRI in two months to see if it really is growing or if I have just injured myself somehow, but I think it is more likely that it's growing. The first operation and the tumor itself damaged my spinal cord, but the likely next step will be removing that section of the spinal cord entirely, leaving me completely paralyzed from that point down. This obviously sucks, but it gives me at least two months to prepare for it, which most paraplegics don't have. I'm trying to get my house made accessible as soon as I can, and I've watched videos about how to select a wheelchair and (ugh) bowel programs. I know a place that can fix up my car so I can drive it again. Please tell me anything you can think of that might help make the transition a little smoother. Thanks.
posted by WhathaveIdonenow? to Health & Fitness (19 answers total) 2 users marked this as a favorite
I recommend asking your questions at planetcancer. My old boyfriend used to post there about brain cancer and found it really useful to hear from fellow patients. It's a site for people in their 20s and 30s. It's affiliated with Lance Armstrong's outfit. Despite his reputation it's a great resource.

I also know that planet cancer organizes retreats at cool places around the country and provides funds for people who can't otherwise attend.

I hope that everything turns out ok.
posted by vincele at 6:30 PM on September 17, 2013 [1 favorite]

Transfer boards! They are made of smooth wood and are lightweight; when you want to transfer from wheelchair to bed/toilet/etc you stick one end under your rear and the other end on your destination and scoot your way across. How this works will depend on your own mechanics, so it may not help or it might help a lot - but definitely worth trying.

Wheelchair seats - if you will be sitting in a wheelchair seat all day, look into getting one that has good ventilation. There are ones with battery-powered fans inside. (There's a tradeoff with seat shape and ease of cleaning, tho; you'll want to try out different ones.)

A portable ramp - you can buy a short foldable portable ramp (heavy but you can bring it in the car). This will help you to get your chair over small barriers like curbs without curbcuts.

You'll develop a relationship with your local accessibility shop and they'll be able to help, and talking a lot to other people with mobility issues similar to your own will help. But basically - think of this as a series of engineering challenges, many of which can be solved in a way that keeps you mobile and independent.

Also, some of this medical equipment is very expensive. You might look into charities that collect secondhand durable medical equipment, you may be able to get eg a power chair or scooter at lower cost.
posted by LobsterMitten at 6:43 PM on September 17, 2013 [10 favorites]

LobsterMitten has it.
posted by michellenoel at 9:15 PM on September 17, 2013

Medicare will pay for a power chair if you need it to get around inside your home, but not a scooter. I bought a scooter used from Craigslist for $600 five years ago and love it; mine is made by Invacare, it's a 3-wheeler but it's one of the sturdier ones, and it has a thick seat with springs - very important. (I've had friends who tipped theirs over sideways because they bought very lightweight ones whose selling point was that they were easy to take apart and transport, so do be careful of that.) Mine needs the batteries replaced every year and a half or so and instead of taking it to the Invacare dealer or any dealer in scooters I take it to Toby's Batteries here in Spokane - they sell batteries for everything from hearing aids to airplanes and they do a thorough check of the electrical system on my scooter and replace the two batteries with very new, fresh ones - the whole service costs a little over half what the scooter places charge.

One advantage of the scooter is that you can hang your stuff in front instead of in back of your body, so when you go into a store and purchase something you don't have to figure out some way to turn all the way around and put it in the backpack hanging on the back of your set - or toss it over your shoulder and hope it lands in the backpack. Also, when you do go into a store and want something on the top shelf and can't reach it, there are a dozen very nice people in there who feel very good about themselves if they can get it for you - don't hesitate to ask them - think of how it makes you feel when you do something for someone who can't.

And if you do get a scooter - stay away from the ones who advertise on TV that if Medicare doesn't pay for your scooter, you get to keep it anyway; that particular company is absolutely a scam and I hate the fact that they exploit disabled people for another almighty buck.

I am so sorry for what you're facing and I hope you don't need any of this information - I hope your situation turns out to be something much less menacing. But, if not, I high-five your attitude - in the long run, the ability to adapt to our miserable circumstances enables us to keep on going with some sense of positivity and even joy now and then.

Best of luck to you.
posted by aryma at 10:11 PM on September 17, 2013 [3 favorites]

A few other thoughts -
You may eventually want to have more than one conveyance - manual wheelchairs, power wheelchairs, and mobility scooters have different pro's and con's. You might want a scooter for going out and about (they're more stable, better on uneven ground, and often their batteries last longer) , and a wheelchair with a tighter turning radius and a raising/lowering seat for inside the house. You might have one chair you use on the first floor, a stair-chair to get to the second floor, and another wheelchair for upstairs only. There are lots of different arrangements. As you get familiar with what you need and the options that exist, you'll start to fit the pieces together in a way that works for your real-world needs.

You'll want to think about how you'll get your chair/scooter into and out of the car. There are lifts or cranes you could have in the trunk/rear of the car (if you have someone else who can help or if you can get yourself to the rear of the car on canes, eg) and there are ramp vans where you can transfer inside the car and drive out. If you get a rampvan, it can be useful to keep a couple of orange cones in the car, so you can block off a parking spot next to you (if you can't find a handicapped marked space, park way at the far end of the lot and put a cone in the space next to you).

If you need a bed that can raise/lower and reposition, there are options. There are hospital beds, which can have uncomfortable mattresses, and there are adjustable beds sold by more general bedding companies, which can have a range of mattress types including more comfortable ones. You may want grab bars along one side to help you sit up and swing around; often there is the option to attach/detach these.
posted by LobsterMitten at 10:27 PM on September 17, 2013 [2 favorites]

Oh - and for wheelchair use in the house, the more accessible you can make your whole house, the better. You'll want to de-clutter. You want nice clear paths, ideally wide!, and room to turn 360 degrees in at least one part of every room. Now's the time to get more shelving, or whatever is needed so that everyone in the house can keep clutter up off the floor.

You could maybe simulate this by either getting a manual wheelchair to try, or just using a rolley office chair to scoot around your house and see how it is.

This will also let you see what things you can reach from wheelchair height - you'll probably want to rearrange cupboards, kitchen counter items, etc to be sure all the stuff you need is within reach.

Other little house things - Check your entrance to the house to be sure there isn't a lip or little one-step barrier. In a manual chair, go over bumps like that backwards (but obvs that isn't safe if you're rolling yourself outward); power chair, you'll need to find a way to ramp it. Inside, you may end up wanting to take unnecessary doors off their hinges to give you a little more room in narrow doorways. Pulling up to a table requires enough room for your chair to go under it without bumping into the table legs, or you can pull alongside it.
posted by LobsterMitten at 10:44 PM on September 17, 2013 [1 favorite]

Response by poster: Doorways! I forgot about the doorways, so thanks. I have so much work to do and I'm so glad I have at least a little while to do it.
I'll probably get a power chair, but I'd really like to get a manual because I have been sitting on my butt so long I actually want exercise now, and because I'm a fat woman from the southern US, and not using a power chair all the time appeals to my vanity.

And this is so gross, but I have no idea how you're supposed to use a toilet if you can't lean up on it? I know not every paraplegic goes to the bathroom lying down in bed, but I don't know where you're supposed to learn.

Oh crap, where do I get money for fixing my house and a new bed and a manual wheelchair? At least I already have a shower seat thing.
posted by WhathaveIdonenow? at 1:56 AM on September 18, 2013

It seems very reasonable that your doctor would set you up with physical and occupational therapy sessions to help you learn safe and useful ways of moving around and living your life with a new set of limitations. That would include things like transferring from bed to chair, chair to toilet, etc. as well as introducing you to a world of gadgets that can help you reach things from a seated position. They will also teach you about proper positioning and exercise to prevent pressure ulcers, contractures, and other complications of immobility. This stuff is really important for your safety and ongoing health and quality of life. I would bring it up with your doctor ASAP. I don't know that any insurance will pay for such treatment on the reasoning that you might soon be paraplegic, but there may be some leeway given your medical history.

Get them to hook you up with a social worker, too, to help with funding the house adjustments and the medical equipment. They'll know about all the resources, from second-hand equipment places to government and nonprofit programs that help defray costs.

You might also want to look into a spinal cord injury support group. It'll probably be more people who've had traumatic accidents than cancer, but you might find it more relevant than a cancer-focused group, especially if altered mobility feels like your biggest challenge at this point in life.
posted by vytae at 4:15 AM on September 18, 2013 [2 favorites]

Hi, fellow para here, welcome to our select and privileged club.

Oh, my dear, manual chair? Do you know how buff you will be in a year or so? You will be Amazonian from the waist up. Look forward to arms that put Michelle Obama to shame.

Problem: you need really good insurance for a manual chair. Or you will have a substantial co-pay. Your wheelchair, and your cushion, are sooo important and will make a huge, huge, huge, difference in your life -- that is getting the right one.

Honeycomb seat cushion. They are about $300 but you can, as I did, find them used on ebay. Cushion is so important.

Are you on/applying for SSD? You can work while SSD as long as you don't top 1k/mo. But if you do, you can use that money for many medical expenses you've had to pay out of pocket.

And pooping. I guess memail me? Once you get accustomed to the pooping thing, it's like you've unlocked a level of human existence where you are like, yeah, this is gross, but is my body, and I love every gross part of it, and hey, butterflies! That's how it works for me, anyway.
posted by angrycat at 4:56 AM on September 18, 2013 [4 favorites]

Oh, btw, if you are in an SSD working situation examine the rules -- the Red Book, I think, is online.
posted by angrycat at 4:58 AM on September 18, 2013

You've smartly identified the gift of time! I endorse vytae's comment -- get the support network in place now. Does your medical network offer a patient advocate? Exactly what does each doctor on your case offer, in terms of continuity of care and ongoing disease management? To whom do you move once the surgery is done? Who's the lead on your case? Does your insurance company have care managers or coaches?

It's time to assemble Team WhathaveIdonenow and rely on them to think the physical/practical stuff through WITH you. They have the experience and the access to the equipment, specialty stuff, etc., that you need. Keep a running list of worries, and take "project" meetings (in some cases, these will be by telephone, or will be at a doctor's appt, but go in to them knowing what you need to get from them!) with the appropriate person to help you find solutions.

You can allay a lot of anxiety, and concentrate on making the best best best of whatever's coming. I mean, I can hear it in your post -- you are on the way to figuring this out. Good luck!
posted by thinkpiece at 4:59 AM on September 18, 2013 [1 favorite]

thinkpieces list of questions to ask re: patient advocates and insurance are spot on.

also, in terms of adjustment: give it time. You can be at your most on the ball with prep and everything and still be assaulted, at first, with the different needs of your body. Just prepare yourself for those moments; you'll survive them and go on to kick major ass to boot.
posted by angrycat at 6:47 AM on September 18, 2013 [1 favorite]

Would a product like Re-Walk be useful?

(I'm not part of the club and don't offer this as a replacement for all the solid advice that others have posted, but as something whose existence you may not be aware of. I've no idea of the logistics of actually acquiring, using, or paying for such a device)
posted by jindc at 8:06 AM on September 18, 2013

If you can get access to a wheelchair in advance, even just a rental for a day, you might want to actually try to go through your day in a chair and then take notes on which problems you need to solve.

You should also practice the actual maneuvering of using a wheelchair to (for example)approach a door, turn the knob, reverse your chair so you can open the door and swing it past you, then go through and figure out how to reach it so you can close it behind you. Our science museum had an exhibit like this for the kids to get an idea of what it's like to be handicapped, and it was really really hard to figure that stuff out.
posted by CathyG at 8:07 AM on September 18, 2013 [2 favorites]

You'll almost certainly want a copy of The Accessible Home, although it's more for long-term alterations than quick fixes.

Medicare will pay for a power chair if you need it to get around inside your home, but not a scooter.

There's a bit more nuance here. Although some scooter sellers have been over-hyping the benefit, and one is getting shut down, you can get a scooter that works both inside and outside as long as in-home mobility is medically necessary (I just checked the Medicare site). On the other hand, I think your instincts are right about keeping your own capability up for now. The important thing is that you discuss this with your doctor and make that decision based on your physical needs.

We've dealt with wheelchairs and ramps in our home. I guess I would go around your house now and assess which doors you have the best access from and which might be best placed for a ramp. I know that locally I hear of charities and volunteers building one a couple of times a year, so you could look into that, especially if you already have a group affiliation e.g. to a church, scout group, or similar.

But also look at your house with regard to one-floor living, if at all possible. Are you upstairs now? Can you move into a den or other downstairs room? Are you in an older home, or a modern ranch? How difficult would it be to widen doorways, are there bumps (even 1" can be murder) or split levels, and what sorts of flooring/carpeting (rugs won't work well with wheelchairs)? It may be time to cull your furniture so you have more room to maneuver.

You probably won't be able to immediately alter sinks and counters, but maybe you already have a table or a space for a table that could allow you to do kitchen work and other self-care activities while using a wheelchair.

What about light switches? If they're at a modern code height, you will probably be able to reach them, but older homes may have them too high. Lights may have pull cords that are too high.

You'll need to re-think cabinets, drawers, and other storage. Up high will now be WAY up high. Get a grabber tool or two and practice using it, but it probably won't be sturdy and manipulable enough for heavy cans of food or anything made of glass.

Probably one of the more critical areas to consider alterations is the bathroom. You will probably want to consider a roll-in tub/shower enclosure. You may want a toilet that has a different base height. You may want a bathroom sink that has a projecting counter. Yes, this will all cost, so you may want to find another way to link up to some volunteer labor to keep that down.
posted by dhartung at 10:42 AM on September 18, 2013 [1 favorite]

If you are going to use a manual chair, maybe start getting your arm strength up now while it isn't your main mode of locomotion. Weights or even taking a manual chair to a track.
posted by thatone at 11:49 AM on September 18, 2013 [2 favorites]

Check out the center for independent living in your state. They vary in terms of services offered but they should be a good resource for referrals as well as possibly some skills training.
posted by metahawk at 10:07 PM on September 18, 2013 [3 favorites]

Response by poster: Hi again. I've not had surgery but I am a wheelchair user now, and I've learned a couple of things. Wear ponte pants if you can get away with it, because they're basically sweatpants, only less ugly. Get a ramp to go into your house if you have any trouble with it at all. A walk-in tub is really only useful for people who can...walk. Really, really impress what you want upon the people you're getting your chair from, i.e. you want to be able to pick it up, you don't want to have to stand to transfer. Youtube lied: you don't have go to the bathroom in bed, though a...ugh...commode chair added to your regular toilet might help. The kind of bath chair that extends to or beyond the edge of the tub is much easier for me. Talk to other disabled people--especially me if you have any advice!
posted by WhathaveIdonenow? at 12:47 AM on February 8, 2014 [1 favorite]

Response by poster: And gloves, get some gloves to grip better if (like me) you are weak/want to go fast. Leather backpacks fit easily around your chair handles, and cross-body bags can work if you can make 2 little loops with the strap. Jeans work okay, but softer pants really are more comfortable. I need to rub my feet every day, and can't spend too long sitting in my chair. Buy diabetic/non-constricting socks.
posted by WhathaveIdonenow? at 2:02 PM on February 8, 2014 [1 favorite]

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