wheeling around portland

i hate to be at this point, a place i had hoped i’d never have to be, but one that somewhere in the back of my mind, i knew was coming. having arrived at, or at least near, this point, proves (as if any of us needed proof) that ms is a progressive disease – one that, unfortunately, only seems to progress in one direction.

i have been finding it increasingly difficult and tiring moving around the house even with a walker, and this morning i decided i was going to use my wheelchair instead. i very rarely use the chair in the house, but today i just did not feel like walking. i have long felt that there is a  use-it-or-lose-it factor, and i still wonder about it. if i just stop walking altogether, will my currently limited ability to stand (assisted) on my own two feet be gone for good? i have an appointment with my neurologist in a week or so, and that question is high on my list.

all of that brings me to another, larger issue. i live outside of portland, maine – a wonderful city, but one that is not terribly wheelchair friendly. for one thing, it is on a hill, so getting around is at best difficult to anyone without either powered transportation or popeye arms, which is just not realistic. it is an older city, and while certain parts have been updated, the old-city feel has been retained. there are areas of sidewalk that are uneven and crumbly brick, there are areas of cobblestone, sidewalk cuts are not always available or well-defined. still, it is negotiable  with a manual chair, but since most of us do not have huge amounts of upper body strength, having someone to push is almost a necessity. a power chair or scooter opens up, if not the whole city, at least the vast majority of it (getting into restaurants and stores in a scooter is something i’ve never tried, and might prove tricky to negotiate.)

so. i found that i can take a municipal bus, which has a wheelchair lift, from the place i have my blood work done all the way into the heart of the city. which is wonderful. the bus would drop me off right in front of the public library (newly and wonderfully rehabbed, although the handicapped entrance still has a long ramp to roll up). the road the library is on runs across the width of the hill; the rest of the city is downhill from there. so either a scooter, powerchair or companion-pusher would be required to get to any other part of the city.

all of this is a long preamble to say that, while apparently my insurance company would likely pay for a powerchair or scooter, they only authorize them if they are necessary for use in the home – not for getting out and about. i could lie and say that i need a scooter to get around my house, which i don’t, and would prefer not to lie. still, though, there is something to be said for quality of life. if i wanted to do any shopping in town, or go to a restaurant, or even just wander around ( i used to spend time wandering around with my camera, and wish dearly that i could do that again) i would essentially be unable to, at least on my own. and there are plenty of people in my condition who don’t have anyone to escort them around the city. seems they are out of luck. no shopping or sightseeing for them.

now, to be fair, i have not spoken to any humans at my insurance company about this, so i might have to retract all of this. it is possible they would pay for a scooter for a use other than getting around the house. it is on my list to try to get that question answered today. but it seems that the all-around health of the insured should be considered – all-around health which includes access to being out-and-about unaided. portland has several paved walking paths, and the immediate area has several outdoor areas (unpaved, but with well-maintained trails), not to mention shopping, museums, and cultural events all of which could be accessed with either big muscles, a companion, or some sort of powered transport.

assuming i am right about this insurance business, i have to wonder how many people are essentially trapped in their homes for lack of the means to get around the city. and people without insurance at all (there are still people without insurance, right?) are in even more of a pickle.

perhaps all of this is why we see so few handicapped people out and about on the streets of the city. they’d be there if they could, i’m sure.

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