Paul's Comments

I haven't posted here over about the last month because I've been busy with my new toy. I now have a power wheelchair from Hoveround! I called them, found out what I needed to do, went to my doctor, who knows my condition, and wrote me up indicating I needed a power wheelchair. Medicare approved my claim, and the only problem was the co-pay, which I think was something just under $1000. I took the company's questionaire and I qualified for a co-pay waiver which I got because of my financial condition, subject to accepting a used, refurbished, demonstration model - with the same warranty as a new model - and all I was required to pay out of my own pocket was - get this - the Medicare mandatory contribution.

$36.10

And that's all I had to pay. I have basically spent the last month either going out almost every day to practice or going out every day and doing things. I should have done this a long time ago, but, as the saying goes, "shoulda, woulda, coulda and $3 will buy you a latte at Starbucks." (That's my rewrite; the original line was "shoulda, woulda, coulda and 50c will get you a cup of coffee." That may also be my rewrite too; I believe when I first heard it the price was a nickel. Prices have gone up since then. Actually I think you can get a fairly decent cup of coffee for probably around a buck, maybe a little more (maybe less) at 7-11 or Dunkin Donuts - reportedly the single largest distributor of coffee in the United States - and you can often get coffee for free when you visit your bank. I'm not really sure, I don't drink coffee; I never acquired a taste for it.)

I would estimate that having a power wheelchair has restored perhaps 70-90% of my functionality in public. I can't climb stairs, I have to restrict myself to places where there is a ramp or an elevator, is no mud, and I have to be careful in how I move on downward slopes for reasons that I explain below, but it it such an amazing change in my life and my lifestyle that now I actually feel guilty if I don't go out every day!

It also frees me from the required one day advance notice to Metro Access, I can simply leave on the schedule of the J11/J12 and F14 buses, which each run once an hour in this area. Also, for very short trips I can go myself; I no longer have to use a shuttle to do my laundry, I have a laundry bag I bought, I can load my clothes and the bottle of detergent and carry it in my lap down to the laundromat which is, roughly 3 blocks from here, then bring it back.

The only real problem I have with using the electric wheelchair over the manual is that there is a big difference when I go on any downslope. I don't know why but I get terrible anxiety attacks going downhill or on downhill slopes. Intellectually I know I can't tip over (when I say "tip over" I mean fall forward on my face) but I still get, if not scared to death, terrified or extremely anxious, up to and including having to tell myself out loud not to get scared or other comments.

I know for a fact I can't tip over; the chair and me weigh 750 pounds. That means it takes a lot of force to tip forward. Even if I do, there are a third set of balance wheels normally hanging in the air that act to stop tipping. I'm also belted into the chair so I can't fall out, and it has a footrest on the front. Technically this means I'd probably have to get to a sudden stop at about 100 miles per hour for the worst case scenario some part of me always thinks is going to occur when I'm going downhill to happen. Doesn't stop my stomach from claiming it will almost all the time.

Further, I've had it tip forward on occasion, it gets caught by the balance wheels and, it will simply stop and it will tip back to the normal position. And it's funny that it doesn't bother me that it happens when it does. But going down slopes I still have anxiety attacks that it would. And with very limited exceptions, the only time it tips forward is when I make a mistake and let go of the control joystick, causing the electric wheelchair to make a quick stop, which, of course, causes the inertia of me moving to tip forward onto the balance wheels. Yet for some reason, when this happens, which is the worst-case scenario, it doesn't bother me! I'm not scared when it happens.

But the potential of tipping over onto my face when I'm going downhill, which I know intellectually cannot happen, still bothers me. I realize that it's just an irrational fear - I don't have it when I'm using a manual wheelchair except in very limited circumstances where I'm afraid that on very steep surfaces I might have trouble keeping my wheelchair from rolling forward or simply skidding - and it will fade over time. In fact, I no longer fear going up and down Drum Avenue, the street next to my house. To do that simply required that I went out every day, and rolled up and down the hill on that street five or six times. Every day I went out, under the simple rule of desensitization therapy; if something scares you, you keep doing it over and over until it stops scaring you when you see that you can't get hurt by it and the fear goes away.

I can make a joke here that when I go anywhere I went uphill both ways. Drum Avenue runs from Doppler Street to Cumberland Avenue where there is a bus stop at Cumberland and Larchmont, half a block away. There is a hill on Drum Avenue which goes up from Doppler and Drum and goes down from there to Cumberland, and conversely, coming back, is a hill from Drum and Cumberland then goes down from there to Doppler. So it doesn't matter which way you go, you have to go uphill in both directions!

Funny thing is I've never had a problem going uphill, I can go uphill at the fastest possible speed the chair can offer. But downhill scares me, even if I slow down. Well, at least it gives me one serious advantage: I am careful and thus I am unlikely to do something that will cause me to make a serious mistake.

Another reason I know this is simply an irrational fear is I can do one simple thing that makes it vanish: drag my foot (or both feet) on the ground. Doing that in a power wheelchair where the two of us weigh about 750 pounds is not going to do a damn thing to help, but the instant my foot or both feet touch the ground, the fear vanishes instantly. In fact, if my feet are in the way it's quite possibly more dangerous than keeping my feet on the footrest because I could actually run over my foot and injure it, but tell that to my stomach which, in some cases is giving me screaming agonies of severe anxiety attacks.

When I'm trying to get across places, like coming back down the driveway from the street, sometimes I touch the ground and it helps. Also, slowing down the speed I go downhill can help. But I have to realize something, that I can actually make the problem worse if I let go of the joystick which controls the speed, the chair can come to a stop and actually trigger it to tip forward as a result, causing the very condition I fear will happen.

Technically I know what it is: it's an issue of control; by touching the ground or slowing down I have the illusion of control which, in the case of a manual wheelchair is correct and is not an illusion. In a manual wheelchair I use my hands and feet, and possibly the manual brakes to prevent the wheelchair from going too fast or potentially tipping over. In the case of an electric wheelchair all the control is in the joystick which determines how fast I will move and the direction. When I am in the wheelchair and my feet are off the ground I am basically helpless and totally dependent upon the chair. The intellectual part of my brain knows that I can't fall forward because of the way that the chair is designed, plus the fact, I'm belted into the chair.

But the part of my brain that understands how to protect me is not developed enough to understand this yet. But it's learning and at some point, when I go down a hill at full speed and forget that I've done so, I'll know that it has learned and the problem is solved.

It will just take a while.