Mike's 100 Day Story

A board to discuss Tcelna as a treatment for Multiple Sclerosis

Postby Lars » Thu Nov 13, 2008 6:39 am

Hey Mike,
It just occurred to me that not only have I never done the "long walk", I don't even know what it is. Could you enlighten me. I suppose protocol site differences are obvious at this point
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Postby hmtucker » Thu Nov 13, 2008 9:37 am

Lars wrote:It just occurred to me that not only have I never done the "long walk", I don't even know what it is.


Lars,

At least at my study site, it's a 500 yard walk. They do time how long it takes to complete the walk but it is not required that you have to be able to complete it in any specified time limit.

Mike
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Postby Lars » Thu Nov 13, 2008 4:40 pm

Mike,
Seems a pretty good indication (albeit obviously difficult) of ones daily functionality. I guess I don't get why Opexa would bother requiring it if it isn't across the board at trial sites. It has no statistical significance when not done uniformly.
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Postby CureOrBust » Thu Nov 13, 2008 5:36 pm

hmtucker wrote:it's a 500 yard walk.
Thinking of the practicality of 500 yards, do they do it inside in a circle or "laps" of a distance, or do they take you outside?
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Postby JanethePain » Fri Nov 14, 2008 7:16 am

Lars wrote:Mike,
Seems a pretty good indication (albeit obviously difficult) of ones daily functionality. I guess I don't get why Opexa would bother requiring it if it isn't across the board at trial sites. It has no statistical significance when not done uniformly.
Lars


I'm beginning to think the protocol was translated into Martian for some sites, considering how different it's practiced.

The "long walk" is 21 times up and down one of the lesser-trafficked corridors at my site. I pick up a couple of brochures (I'm learning a LOT about epilepsy!) and just do the walk, careful to remember to touch the big old red circle on either wall. 8)
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Postby Lyon » Fri Nov 14, 2008 1:22 pm

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Last edited by Lyon on Wed Jun 22, 2011 2:25 pm, edited 1 time in total.
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Postby av8rgirl » Sat Nov 15, 2008 7:49 am

The long walk at my site was several times up and down a long corridor and it was done almost every visit during the IIb trial.
“When everything seems to be going against you, remember that the airplane takes off against the wind, not with it.” - Henry Ford
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Postby Lyon » Sat Nov 15, 2008 8:16 am

..
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Postby Loobie » Sat Nov 15, 2008 8:30 am

It's just a part of the EDSS evaluation. You have an eye test, short walk, long walk, and Dr. exam and questions. I had to do it every single visit.
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Postby Lars » Sat Nov 15, 2008 7:27 pm

To reiterate, never done it, never discussed it, and never heard of it. It may be part of the standard EDSS test but it is obviously not part of Opexas requirements. And again, more ??????'s I wouldn't mind a long walk now and again.
Peace,
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Postby JanethePain » Thu Nov 20, 2008 7:01 am

Lars wrote:To reiterate, never done it, never discussed it, and never heard of it. It may be part of the standard EDSS test but it is obviously not part of Opexas requirements. And again, more ??????'s I wouldn't mind a long walk now and again.
Peace,
Lars


What I want to know is how many of us got tied up with sites that used the Martian protocol... :P
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Postby av8rgirl » Sat Nov 22, 2008 11:18 am

JanethePain wrote:
Lars wrote:To reiterate, never done it, never discussed it, and never heard of it. It may be part of the standard EDSS test but it is obviously not part of Opexas requirements. And again, more ??????'s I wouldn't mind a long walk now and again.
Peace,
Lars


What I want to know is how many of us got tied up with sites that used the Martian protocol... :P

Maybe not the Martian protocol but run by Martians??? does than count...LOL!

Still waiting....now week 5 of this exacerbation with no end in sight...and no steroids being approved.
“When everything seems to be going against you, remember that the airplane takes off against the wind, not with it.” - Henry Ford
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Postby JanethePain » Sun Nov 23, 2008 10:33 am

av8rgirl wrote:
JanethePain wrote:... What I want to know is how many of us got tied up with sites that used the Martian protocol... :P

Maybe not the Martian protocol but run by Martians??? does than count...LOL!

Still waiting....now week 5 of this exacerbation with no end in sight...and no steroids being approved.


Man oh man, Cheryl, I wish I could send you something to get this thing cleared up before the holidays.

Once upon a time, a well-meaning 'Net friend linked me to some stuff about bee-stings. Now while I would never consider that (bees are our friends), if it had a prayer of working, maybe I could arrange some mother-in-law sting therapy. I rate mine (the m.i.l., I mean!!!) just slightly less toxic than cobra venom. Think it might work? Or shall I pitch this idea to the Defense Department? :P
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Postby av8rgirl » Sun Nov 23, 2008 10:54 am

JanethePain wrote:
av8rgirl wrote:
JanethePain wrote:... What I want to know is how many of us got tied up with sites that used the Martian protocol... :P

Maybe not the Martian protocol but run by Martians??? does than count...LOL!

Still waiting....now week 5 of this exacerbation with no end in sight...and no steroids being approved.


Man oh man, Cheryl, I wish I could send you something to get this thing cleared up before the holidays.

Once upon a time, a well-meaning 'Net friend linked me to some stuff about bee-stings. Now while I would never consider that (bees are our friends), if it had a prayer of working, maybe I could arrange some mother-in-law sting therapy. I rate mine (the m.i.l., I mean!!!) just slightly less toxic than cobra venom. Think it might work? Or shall I pitch this idea to the Defense Department? :P


First off, I am allergic to bee stings...second off, I already have a MIL that is probably in the same category. We could probably market them together and make a mint!!!

LOL!

I don't think the neuros care about how I am feeling as long as their precious protocol isn't violated....
“When everything seems to be going against you, remember that the airplane takes off against the wind, not with it.” - Henry Ford
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