072323d

when I was young
I was a baby
I was dependent on everyone

as a young man
I took care of myself
never saw a doctor
tho I was still dependent
as we all are
on the infrastructure
of our society

but now, once again
I can't walk
and depend on others
and what I have to look forward to
I understand all too well
but I understand too
as when I was a baby
my best philosophy:
live for today

112621d

My take on ramp vs lift in wheelchair vans or at houses.

When I first got hurt, I didn't know. I fault the rehab hospital for not discussing pros and cons with me. To be fair, I should have asked a lot more questions. Be that as it may, these are my takes after 18 years.

VANS: lifts are just not a good idea if you are using a power wheelchair. They are prone to electrical and hydraulic malfunctions, which can be very inconvenient if you are in the van or not at home. In the US, it's hard to find a wheelchair-ready vehicle to get you home. In Tuscaloosa, one of the ambulance companies has two wheelchair vans. For a six-county area. Boston has wheelchair taxis. These are common in larger cities, and even some small towns, in western Europe, but they are rare in the US. And not just anyone can maintain or repair accessible equipment. If you can find qualified repair people at all, keeping a lift working (I'm looking at you, Braun and Ricon) is going to cost a lot. But the biggest problem is the danger. What do you do if you get stuck in the van when it's 98F and sunny? By contrast, a ramp is hardly capable of breaking down. For me, this trumps every other consideration.

HOMES: Outdoor lifts can be reliable (my Wheel-o-vator worked well for about 12 years). However, finding people who can repair such things can be difficult. And even though mine worked well for a long time, when it did need work, we found that bad choices had been made. For instance, the outlet where the motor plugged in was exposed to the elements. We were lucky it lasted as long as it did. A wooden ramp, in a hot and humid climate will need to be replaced after 10-15 years. However, this is cheaper and easier than replacing a lift. The ramp will work even if the power's out. The surface gets slick when it's wet, but some sand mixed in paint solves this problem.

If at all possible, you should have two exits from your home, in case of fire. Unless your living space is far above ground level, this is most easily done with two ramps.

112121d

Mini-review of a small pen

Who would have imagined that a plastic "Y", designed for use by people with arthritis, would be the greatest thing since sliced bread for quadriplegics. Maybe that's a slight exaggeration, but hear me out. I need both hands to sign my name with a straight pen, which is quite frustrating. This pen (see below) slips over my forefinger. I can use it even though I have no grip at all. You don't need finger mobility, but you do need to be able to use your arms. I've experimented with other pens with a narrower "V" and they did not work for me. The brand I use is called PenAgain. It is possible to get an employer (I did) or other entity to pay for them.

I previously used a cuff, which wraps around my hand and is held in place with velcro. A pen or pencil slides into a long narrow pocket, such that the pen sticks out between thumb and forefinger, but perpendicular to your forefinger, or the other way, past your pinky and at right angles to it. In practice, the cuff loosens and rotates unhelpfully around your hand. It works, but not well. Also I could not hold my hand in what felt like a natural position.

The pens are not perfect. The ink cartridges don't last long, and the separate piece that covers or uncovers the pen tip breaks off easily. And they're not particularly cheap. Fifteen years ago they cost about $3.50.

111321c

I was inspired recently to write some reviews of adaptive equipment, so here goes.

Shortly after my accident (2003; I'm a quad) I was given a cuff. It wraps around the middle of my hand, crossing palm and back, and has a slot for the back end of a bent spoon or fork. The business end of the utensil protrudes between thumb and forefinger at a very convenient angle. I used cuffs for years, but they cost more than I think they should, and I discovered that I don't need them. I still prefer bent cutlery, but I wedge the utensils between forefinger and middle finger. I hold them in position with my thumb. I can eat nearly as easily with unbent spoons. Straight forks are only easy with soft food. Considering that the cuffs cost $13 plus shipping in 2003, I'm not going back.

050121c

 

Self-management for people with SCI: Welp, pleased to learn that I  haven't done every single one of these. I am learning something for myself. If only, so far, the impetus to set additional health goals.

042321b

 

wool scarf and hat

spinal cord injury means

I'm cold below 80F

042121b

 

 

C6/C7 quad here

I am participating in a study of accessible attachments for a tablet. So far, two things are very useful.  A loop that attaches to the part with the screen, and one that sticks to the flap that makes it stand up when it's open. So why didn't we think of that? Now I can open it by myself!

020918b

we have purchased an old bus that a small city (really a large town) used as part of its public transportation system.. It holds 22 passengers,, plus one in a wheelchair.  We have to get it here from Mississippi and then turn it into an RV.. We are thinking of names,, especially names that end with the word rocket or the word  flyer.  But not "flexible!" Suggestions?

111116

stuck in bed again
banned from the freedom
of the wheelchair

101416

quadriplegic
buckled in my own chair
in case I fall out

unconscionable

$400 for a bent lift foot on my van. If I was trying to live on just my disability pmt I'd be screwed; what I'm actually making is way more.

Hotel Review: C+

Hotel Review

Courtyard Marriott Chevy Chase
just outside the District of Columbia

Score: C+ (79%)

Dates I stayed: Nov. 23-30, 2013

Reservations made by Able to Travel, which is affiliated with the United Spinal Association

So I'm a quadriplegic, & when I travel I have specific requirements, of which the most important are a roll-in shower & a roll-under bed. My ride is a Permobil power wheelchair, and out of it there's little I can do. We travel with a portable battery-powered lift called a Trixie Lift, chargers & other small essentials, and a shower chair, the purpose of which is obvious. I used to fill ½ a suitcase. Now it's two, plus lift & chair.

We learned long ago that making our own reservations led to us getting fucked by brainless & uncaring hotel staff 3 times out of 4. This was actually the first time Able to Travel didn't come through with an A+ experience. And I think they might've been lied to.

We arrived about 11:30 pm after a 14-hour drive. My wife used to drive 2-3 hours out of each long road trip. Now it's all on her. One of many clues to how lucky I am. I'd called from the road and sure enough the reserved room really had been saved for us. I don't know what Mary at Able to Travel tells reservation clerks. Maybe how many barrels of cement their next of kin will have to find if they want the whole body to be buried in one place. (Just kidding, Mary, please put down that knife & back away slowly.) My wife said “Roll-in shower and roll-under bed, right?” “They said they'd have that installed by now,” the clerk said, risking taking one for the team. “It's been delivered....” So we go up to the room, and sure enough, we have a platform bed. The Trixie Lift is a long-egged feller, and the legs go under the bed. If not, it's throw me or drop me. And that's going the easy way, getting into bed. Or, that would be the case, but we brought bed lifts. These are stout plastic flat-topped pyramids about a foot high. Drag the mattress & box springs a foot to the side & shove a bed lift under each exposed corner. Then laugh at the platform. The first time we needed a bed lift we didn't have one. Luckily we were visiting my dad. He lent us two cinder blocks. Anyway, the bed in the CMCC wheelchair room was on a platform, & we were damn lucky to have bed lifts.

Otherwise the place was great, except for the non-accessible doors to the back parking lot, which was the only place a wheelchair van fit. Also, the bathroom had no heat lamp. Did I mention that quads have internal thermometers for shit? My body thinks it is ALWAYS COLD. Sweat's rolling down my face and I'm still shivering. So yeah, a heat lamp helps. C+. The large bathroom & roll-in shower are nice, but not nice enough.

David C. Kopaska-Merkel

quadriplegia and professional employment

I just sent this letter to one of the organizers of a conference that I will attend next month. I believe that people planning conferences simply don't think about accessibility or don't understand what it involves. They deserve to be chastised, perhaps, but I prefer to enlighten.

I am well aware that the hotel connected to the conference center would be the most convenient for access to the meeting. I would stay there if I could. Unfortunately, the Americans with Disabilities Act requires accessible rooms without defining them very carefully. Most hotels that have accessible rooms have rooms that are accessible to paraplegics, people who can get in and out of their wheelchairs without assistance. Only some hotels (the Microtel chain is one good example; most of their motels qualify) have rooms that are accessible to a quadriplegic. I basically need two features, in addition to a sufficient amount of space. I need a shower with no lip, so that a wheelchair can roll into it, and a bed that is up on legs instead of a pedestal (box). This allows my portable lift to roll right up to the bed where I can be swung into or out of bed safely. This may be a lot more information than you wanted. However, if you are ever involved in the decision about a conference hotel, this should be a consideration. Improved emergency room and rehab technology over the past couple of decades means that more and more people are surviving with severe injuries. Many of these people are still able to function in the workplace and therefore attend conferences.