Internet Article about Me, and Some Video...

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Internet Article about Me, and Some Video...

Postby marcstck » Fri Feb 20, 2009 1:30 pm

An old friend of mine has published a short Internet article about my experiences fighting multiple sclerosis. I thought some here might find it interesting.

Also, I put up a YouTube video showing what it's like to take a power wheelchair trip through the Upper West Side of Manhattan. It's kind of funny, and it's getting some good response. I hope you get a kick out of it...

Here's the article:
http://www.tonic.com/news/article/livin ... m-disease/


And here's the video:
http://www.youtube.com/watch?v=tAupl7GLleA
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Postby cheerleader » Fri Feb 20, 2009 2:05 pm

Marc...
This video is great. I love the jazz music and your acerbic humor....you're like a wheelchair riding Woody Allen! Man, I miss living in THE city. Love the "human blockade", and jostling for position. Turn on those turbojets! Not easy to get around for you, but seeing this video, I understand your zest and joie de vivre, even in the midst of your struggle with MS. Look forward to reading the article.

AC
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby mrhodes40 » Fri Feb 20, 2009 2:36 pm

Hi Marc,
I enjoyed both of them. How interesting to see the world from that POV. the video was well done. I'd watch another one too. You have a knack for play by play. Have you got one on the best fun train trip for a w/c user? :D

I live in Seattle, but I feel like if I needed to go to Manhatten along broadway I'd know what to expect. I can see, for me, the people, the sidewalks, I could not do it with my cane, but maybe with my rollator. So now I know.

I have to admire also your equanimity as described in the article, how'd you find that?

I use a rollator/cane/or electric cart offered courtesy of the shopping establishement I am in, depending on the situation. Last fall, I broke my arm/shoulder joint (shattered it) in an extremely bad fall and could not go to the bathroom without help because I had no balance at all with my arm swathed to my side and my already limpy gimpy way of getting around.

I did not have time to adjust to my sudden drop from 'disabled but getting by' to totally dependant...no equipment, no shower chair etc. so I had in-home occupational therapy and they came in like gangbusters with recommendations and "how to's". But still the first few weeks adjusting to it all, making internet purchases then installing stuff etc was hard; not least because my environment was only semi accessible.

the ironic twist was that we were building an accessible house and it was only about 10 weeks from being done :(

I often wonder how other people make those transitions, and if there is a graceful, easy way to do it. to me it feels like I make these transitions with difficulty, every one puts me off my game for a long time and I am aways caught like it is some wierd surprise. :?

Since you have been through the gamut all the way to chair, I wonder Is there some comfort in that? I have recently had the thought maybe it'd be easier to be there.

What transition wisdom would you share looking back from where you are now? It sounds like you had to change and adjust really quickly.
thanks! Cool post!
marie
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Postby Lyon » Fri Feb 20, 2009 2:57 pm

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Postby marcstck » Fri Feb 20, 2009 3:08 pm

I'm glad people are enjoying the article and video.

Marie-I'm still able to get around the apartment using a cane, so I haven't had to adjust to being in a wheelchair full time. Living in a typical New York City apartment (in other words, small) I'm not sure the power wheelchair would even be helpful. I've outfitted the apartment as best I can (raised toilet seat, bars in the shower, etc.), and so far it hasn't been too much of a problem banging around the house...

Outside though, I need the power wheelchair to go any more than 50 feet or so. I was very wary about getting a wheelchair, and had a hard time wrapping my mind around the fact that I now need one. Once I got it, though, it was so liberating that I was thrilled to have it. It's still kind of strange to be "the wheelchair guy" to all those people out on the street, but at least I'm able to get out on the streets, know what I mean?

One thing I did make sure of was that I got a wheelchair that would allow me to be very mobile here in New York City. As the video shows, the chair needs to be very rugged, and it helps to have one that goes pretty fast. Many power wheelchairs top out at about five or 5.5 mph, but I got one with a high-speed package installed, so it gets up to 8.5 mph. That really helps getting across busy streets and steering clear of danger. It also makes it kind of fun, being able to go three times as fast as the mere mortals walking around on functioning legs...

it's been my experience that the anticipation of potential MS horrors to come has been worse than the actuality of them once they arrive. I'm sorry to hear that you had such a nasty fall, it just goes to show how careful we have to be, and that we should take advantage of whatever aids are out there...
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Postby mrhodes40 » Fri Feb 20, 2009 4:50 pm

Hi Marc
and had a hard time wrapping my mind around the fact that I now need one. Once I got it, though, it was so liberating that I was thrilled to have it

That's what I thought must be true. It is a little like that with a cane too, but you still struggle with those. A w/c is struggle free physically so I imagine it is a real freedom once you get in the mind for it.
, but I got one with a high-speed package installed, so it gets up to 8.5 mph
plus its cool, why not call it what it is? :lol:
it's been my experience that the anticipation of potential MS horrors to come has been worse than the actuality of them once they arrive.

Indeed, so far that has been my experience as well. I still stubbornely cling to the fears though what's that about? Maybe I am trying to motivate myself to "not give up". That can almost be a kind of hindrance. Example I fell because I was determined to NOTuse my cane in the house, I was drawing a line in the MS sand. You see how that worked out.....
I'm sorry to hear that you had such a nasty fall, it just goes to show how careful we have to be, and that we should take advantage of whatever aids are out there...
YES! thank you! marie
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Postby robbie » Fri Feb 20, 2009 7:14 pm

really really good, marcstck
Had ms for over 19 years now.
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Postby scoobyjude » Fri Feb 20, 2009 9:01 pm

Marc,
I also had been a life-long, glass half-empty proponent. My first reaction after I was dxed was--See, I told you all that my life sucks!! Then I realized that that attitude would just make me more miserable so I decided to try and have a more optimistic outlook. Now I have come to a point where I can find happiness in the little things in life and not just regret for what I can't have. My life still sucks but some days it sucks a little less. Guess that's the best I can do right now, but you have definitely inspired me to stop whining about the things I cannot change. Acceptance is a hard concept to achieve. Thanks for sharing your story :D
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Postby Loobie » Sat Feb 21, 2009 7:41 am

I'm right at this point also. It's a weird period where you realize that you are still ambulatory, but have severe limitations when it comes to walking distance. In my house, even in an office, I am fine to move around on my feet. But get me out on the street or in the factory, and I walk maybe 100 yards or so and am spent and need to take a break. So I'd been thinking about hanging it up, but then for the past couple of weeks I thought that if I could just buzz around in a power chair instead of walking, it's not nearly so daunting. All my fears about work and going shopping and everything have to do with the fact that I get so pumped up to do something after sitting around for a while, then I attempt it, and it's more often than not too much and you feel discouraged.

So I applaud you big time for putting this together. You hit me 'in my sweet spot' in terms of like timing. This is the stuff I'm dealing with, and watching these videos really hit me profoundly. It's a weird transition when you think about it. Going from extremely active to contemplating this is so f'ing scary. But then, and I don't know when, you start to think "you know, if I could just not have to walk so much I could do so much more". I think right about the time where that phrase quits becoming an oxymoron is the tipping point. Slow down, or hamstring yourself if you will, to do more; what a concept!

Thank you, thank you for doing this. Sometimes when someone else is just slightly in front of you in terms of where you're at with this, it really helps to see a success story. Ha, that seems funny calling it that since none of us want to be in this postition, but it really is. These videos are really helping me at this point, right here right now. Many thanks,

Lew
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Postby marcstck » Sat Feb 21, 2009 6:18 pm

It's very nice to think that the article and video I posted have helped some fellow MSer's who are in different stages of the disease. I really just created the video for entertainment value, but now I understand how it can have educational and emotional value as well.

Thanks for the comments. You've opened my eyes, too...
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Postby Lyon » Sat Feb 21, 2009 6:25 pm

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Postby marcstck » Sun Feb 22, 2009 11:00 am

Lyon wrote:You know what struck me about it Marc? As a non MSer and non wheel chair user I was most struck by the fact that your chair wouldn't go through the door into that bagel shop.

Is it really so hard to come up with a chair that will go through a normal size opening so that you can at least go in like everyone else and get warm?

Bob


Bob, there are a number of issues at work here. First, in orders for the chair to be robust enough to handle the poor condition of New York City streets, it has to have a certain amount of bulk for strength and width for stability. I think there are chairs with a smaller "footprint", but I'm not sure if they stand up to the rigors of city life...

Secondly, New York, being an older city, is generally wheelchair unfriendly. Most of the structures here were designed well before anybody gave a thought to the disabled, and blockades abound for those in wheelchairs. I'm sure some of the newer cities are much more easily accessible, though I'm not sure they have the allure of NYC.

Doorways in particular present a challenge, because even if they're wide enough, if they don't have an "auto opening" feature, the wheelchair user must rely on the kindness of strangers to get through the portal. It's almost impossible to operate a power wheelchair and manually open a door at the same time.
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