A First Attempt with a Wheelchair

Last Thursday, Shawn, the Rehab Specialist, loaned me a Permobil C300 wheelchair to try for four days.

The idea of switching from the scooter to a wheelchair came from a phone conversation with a driving specialist at Courage Center. Earlier this year, I fell frequently when transferring to the driver's seat in the van. The woman at Courage explained that, if I used a wheelchair, I could drive right up to the steering wheel, use an automatic lock-down device, and drive with no transfers. This would, it seemed, prolong my independence. My neurologist agreed and signed a prescription for a wheelchair evaluation and purchase. My husband agreed and arranged for an ibot test drive. That was loads of fun, but I was not surprised when the insurance company (after months of consideration) said we would have to pay most of the $29,000 ibot price.

I set up an appointment with a vendor of more traditional wheelchairs, who sent Shawn to visit me. We probably went off in the wrong direction immediately because we discovered we're both Renaissance Festival fans. Shawn suggested a couple of chairs with good cross-country capabilities and delivered the Permobil as a test.

Understand that, in the intervening months, I'm noticing everything I hate about the scooter. It's uncomfortable; my butt is frequently aching by noon. Several times a day, I have to use my hands to lift my feet from one side of the tiller to the other. If I want to get close to something, I have to parallel park the scooter and swivel the seat. When working in our little kitchen, I have to go out, turn the scooter around, and bring it back in.

By the time I get the loaner chair, I've built a fantasy of how great this is going to be.

I hated it.

First, due to a misspent youth reading books instead of playing video games, the joystick control is difficult. My right hand feels so weak so soon that we change the controls to the left hand. That feels safer, but I later discover opening doors is difficult. (I have to reach the door knob with my left hand and then can't drive through the doorway without the door starting to close on me.) The wheelchair is actually wider than my scooter, so getting through the doorway is harder.

Transferring is more difficult (this, I expected) because I don't have a tiller-height handle to push against. Also, I have to bend down and flip up the foot rests. Not an easy manoeuvre, as I have no control of my feet.

After a few days using the wheelchair (off and on, because I don't trust myself to transfer from it without help), I have a whole list of cons...and a few pros. I'm wondering whether this switch is really what I want.

Sunday night, I'm testing the wheelchair in the bathroom at work. Yay, it fits in the stall! How the heck do I get the door closed? I swivel one direction and still can't reach the door. I swivel the other and reach it. I can (with difficulty) get those foot rests flipped up. I can cling to a grab bar, get my dress up and underwear down, swivel and sit. How am I going to get up? The other grab bar has a mongo toilet paper dispenser two inches above it AND the two grab bars are so far apart I can't reach both and push against them to stand. I need my scooter tiller!

Other people with disabilities make wheelchairs and bathrooms like this work for them. I must be doing something wrong or missing some obvious solution or I could make it work, too. Okay, I think, if I get the surgery to install the supra pubic catheter, I won't have to transfer and can use a wheelchair. I'm considering surgery to make up for the limitations imposed by technology and architecture.

Yesterday, I heard a radio report about the Little Rock Chili Incident, a story from the struggle to integrate schools in 1957. Minnijean Brown Trickey, the African-American woman (then girl) who was involved said she tried hard to be perfect, but couldn't be. The message she got was: "You have to be perfect to come to our imperfect school." She says, "That is the nature of racism: you can't measure up. We'll make sure you don't measure up. We'll do everything we can to keep you from measuring up, for as long as this country exists...And we'll do that so well, you'll think it's your own fault."

Once again, I am surprised to recognize that my situation is a human rights issue. I realized I have been thinking it's my fault.

I have one mentor in this whole disability thing: a lovely woman named Carolyn who had polio as a young mother (of four). Over the years she has been a quiet advocate of disability rights. Her advice to me was to make sure I get what I want. "You're the one who will have to live with it," she said. "Don't let them sell you something that doesn't meet your needs."

Proposing a Mutual Help Partnership

A recent study found that, among the 21 major occupational categories, the highest rates of depression among full-time workers aged 18 to 64 were found in the personal care and service occupations (10.8 percent). This includes people who help the elderly and severely disabled with their daily needs.

Today I thought: "Hey, elderly and disabled people tend to be depressed, too; we could learn to help each other."

Turns out that despite phrases like "Incidence of depression rises in the aging community." I'm having no luck verifying the first part of my thesis. Doctors are sometimes reluctant to diagnose depression in elderly patients. I had similar difficulty documenting increased incidence of depression among people with disabilities. (Although people with disabilities are often unemployed and unemployment is linked to depression.)

So, I got more specific: People with MS have trouble with depression. "Certainly we feel that patients who have a chronic disease can develop a reactive depression," said Stephen Kirzinger, MD, from the Multiple Sclerosis Care Center Program, Department of Neurology, University of Louisville, in Kentucky, "but in the MS population the incidence is much greater than what you would expect, comparing it with other chronic-disease processes. So we feel it is a manifestation of the disease that our patients, because of their MS activity, actually have a chemical change that leads to depression." (reference) The article discusses the ineffectiveness of antidepressants for people with MS.

I think this is an idea worth pursuing. Emotions Anonymous (a twelve-step group) was of such help to me, so I'm a fan of mutual-aid groups. Getting to a group might be difficult for elderly or severely disabled people, but how could it change the caregiver/care receiver relationship if it were considered a partnership in depression prevention? [A lateral thought: how many caregiver support groups offer simultaneous care receiver support groups? I'm thinking of parenting support groups where the little kids play together in a separate room.]

Here's a subject for further study: What would a depression prevention partnership look like?

P.S. Alexis isn't reading this blog (I think), but she's gotten on my case for NOT asking for help recently. I'm continuing to try to practice more frequent requests for help with less shame on my part.