Domain: mdausa.org
Stories and comments across the archive that link to mdausa.org.
Comments · 6
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Re:Muscular Dystrophy Association
Links for some devices
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Re:Sidewalk as battleground
Competition for space on sidewalks will continue to be an issue while there is a perception that riding anything (including bicycles) in the streets in urban areas is dangerous.
I have mitochondrial myopathy (see MDA and UMDF) and started using a three-wheel electric scooter in January 2000 after a major setback from catching the flu. My equipment has a dial that you can set for maximum speed, so it is much easier to match the pace of pedestrian traffic than if you ride a bike. Does anyone know of you can do the same with a Segway?
Speaking as someone who has has physical contact with a car making a right turn on red in a crosswalk, the extra height would be a distinct advantage over motorized wheelchairs for visibility.
Any time something gets labeled "medical equipment" the price tag goes way up. Being able to adapt regular consumer goods would seem to be a plus as well.
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Re:And here I am
The thing is with electric wheelchairs they're a sort of double edged sword.
Yes a number of disabled individuals in an electric wheelchair could push them selves around in a manual chair. In my own circumstance I could indeed push my self around. But due to my disability, Anterior spinal muscular atrophy, type 2, pushing my self around is very slow, tedious, and tiring work. Not to mention a simple low grade hill will bring me to a stop. Even if I did excersize extensively, the disease works harder then I do. Even others with more severe disabilities could push them selves in a manual chair, but the effort to do so or the lack of muscular control makes it too dificult. So the electric aspect of wheelchairs allows us to travel with speed, thus being more normal.
In a vague way once you begin using a manual wheelchair it's all down hill from there. Walking is indeed a baseline form of exercize, sitting and pushing your self around is less, and electric more so. That is more taylored to those with progressive diseases. I was a seemingly normal kid, just with a particular walk, up until I was 8. I'd fall down fairly often, more so the closer to 8 I got. Around 8 I got my first manual chair, I'd push my self any where I needed to go or my mother/friends would push me, how ever I could stand on my own for limited ammounts of time.
I don't remember exactly when I got my electric chair, it wasn't too long after my first manual.
Electric wheelchairs are more often then not a neccessaity, for those in them.
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As a note to any one who mentions the cost of this thing, it isn't just the iBot. Wheelchairs, and medical equipment in general, are expensive. I use a rather plain/normal electric wheelchair, which when newly aquired was 15,000$
Which is well beyond the means of my family. Thankfully how ever, the government (yes, I know, taxpayers) has picked up the tab on that one. But they don't do it swiftly, the process of aquiring a new chair is a long and tedious one.
I my self am in need of a new chair, as mine is several years old (5+) and it's simply meeting the end of it's life. So we will consult with my numerous doctors, a medical equipment distributer, and start the process soon. Justification letters have to be written, any denials have to be resubbmitted, it can often take a year or more for it to come to an end.
This is true for all things medical that you aren't paying for out of pocket. It all needs justification, a prescription, and time. Some less then others of course.
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If I some how manage to wind up in one of these, I'll be sure to submit something to slashdot about it ;p
and to the trolls bickering at my previous post, can't you handle a counter-joke with a bit of insult tossed in?
Don't you think it was more flame bait then funny to joke about mobility as a "sucker"? -
Re:I'm sick of first postsHey, at least there's somebody who's out there campaigning for a national organization who's looking for a cure for my disorder. I don't recall seing any 24 hour telethons to help those suffering from your ailment.
Take heart my friend, there have been a number of new and exciting treatments developed in the past several years. Talk to your doctor, he may have something that's right for you.
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Re:Does it work on animals after birth?
Post natal gene therapy doesn't work
Cystic fibrosis and muscular dystrophy are two of the hot favourites for post natal gene therapy.
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Re:Who decides?
My main problem with this sort of thing (and there are many problems with it) is the question of who decides the fate of the handicapped child?
Well said. What makes one person more qualified than another to judge the nature of suffering?
I regularly work with kids who suffer from severe diseases that will probably kill them before they're grown. They require continuous care. I've also seen the joy that lights up their faces when I pull a quarter out of their ear or make a playing card change from red to black. The other day I watched a little boy and his father playing with their train set. Am I to seriously believe he takes no joy in life because his back bones have been fused so he can sit up right in his wheel chair?
I find that attitude both arrogant and unworthy of a human being.
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