Thread: Ampyra/4AP
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Old 10-25-2010, 06:39 PM
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Riverwild Riverwild is offline
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Join Date: May 2007
Location: Heah!
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15 yr Member
Riverwild Riverwild is offline
Magnate
Riverwild's Avatar
 
Join Date: May 2007
Location: Heah!
Posts: 2,921
15 yr Member
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Ok, here's my take on Ampyra.

It is helping me. It took me awhile to get on the ball and figure out a way to evaluate it. This is not scientific, just my take!

I walked in heels for four hours for the DSD's wedding. First time in years I wore heels and I shed them asap but I walked in them! (I have to qualify this- They fit when I put them on the first time, but when I put them on with nylons, I was a-slippin' and a-slidin', which didn't make it look graceful at ALL! It was more of a "mincing" or a "prancing" than a walk but I survived!)

I get up from a seated position without making "that" noise now. I'm not using the arms of chairs to lever myself up anymore, my legs are doing the work. I still want a toilet that is higher than "chair height" (BTW, that's a freakin' lie, yanno! Chair seats should be three feet off the ground!) but I get up without doing the 1-2-THREE! I find myself leaping out of chairs now- at least higher chairs!

It doesn't do a darned thing for spasticity for me. I'm still stiff and spazzy but it doesn't stop me from pretending that I'm not.

I go further, faster. I hear that's what it's supposed to do, so I guess it's working.

I haven't had any other sides. I forget to take it on time but I've developed a rule. I take my meds now as soon as I get home from work at 7:30 a.m. and again after supper. I'm getting better at it, but still forget sometimes and have to adjust the whole schedule when I forget, since you're not supposed to take them closer than 12 hours apart. I've taken them as close as ten hours apart and haven't had any adverse effect but I don't push it. I haven't had a seizure yet!

I have to drink more water. I'm floating away. The side effect of UTI's scares me. After the one and only that I had, I don't want a repeat, so I am the water carrier! I have a water bottle permanently attached to my hand now. They're like purses, I have a different one for every day! It doesn't hurt but I am getting to the point that I hate water......and bathrooms with short toilets!

I am sure now that none of this is wishful thinkng, so I am going to stick with it for now!
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I know the sound the river makes, by dawn, by night, by day. But can it stay me through tomorrows that find me far away?


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I have this mental picture in my mind of you all, shaking bones and bells and charms, muttering prayers and voodoo curses, dancing around in a circle of salt, with leetle glasses and tiny bottles of cheer in the middle...myyyyyy friends!

diagnosed 09/03/2004
scheduled to start Tysabri 03/05
Tysabri withdrawn from market 02/28/05
Copaxone 05/05-12/06
Tysabri returned to market 06/05/06
Found a new neuro 04/07
Tysabri 05/25/07-present
Medical Marijuana legally 12/03/09
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Negative for JC virus antibodies!
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I'm doing alright and making good grades,
The future's so bright, I gotta wear shades!
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"Thanks for this!" says:
barb02 (11-04-2010), SallyC (10-25-2010)