Comments on: Walk This Way

By: Celeste

Celeste — Sun, 15 Aug 2010 21:40:47 +0000

I also found your site through Momentum Magazine. I’ve just started exploring & I like what I see. I can always use a laugh.

I started Amprya on 7/17 even though my neuro wrote the prescription on 6/3! I’m not sure exactly who dropped the ball – the mail order pharmacy, or the drug company, but it sure took awhile to get it.

I have PPMS & noticed improvement within a few hours of taking the first pill. Because of the possible side effects it was suggested that I only take 1 per day for the 1st week. I’m not sure if my walking speed has increased but I feel a whole lot better. I had felt lilke I had a layer of concete just under my skin that got thicker & thicker lower down my body. By the time the concrete reached my feet they were solid cement blocks. The whole 1st day it felt like the cement was breaking up. I almost didn’t realize how bad I felt until I started to improve. I feel like I’ve gotten more of my life back.

Your post is a little old so I’m hoping you are now also feeling positive results.

By: Vicki Luman

Vicki Luman — Thu, 12 Aug 2010 21:11:06 +0000

I am not on Ampyra yet. Recently my neurologist gave me a scrip for steroids which had possible side effects of “psychic derangements may appear ranging from euphoria, insomnia, mood swings, personality changes, and severe depression, to frank psychotic manifestations”
Love your web site. Thanks for keeping us laughing.

By: watergir1

watergir1 — Thu, 12 Aug 2010 19:05:05 +0000

I, too, read about your site in Momentum. You caught me with the “I’m the one with grass stains — on my shoulders” Since I walk mostly on gravel roads or pavement, I’m more the one with bruises or road burn on my shoulders. I went to the sporting goods store to get some braces and pads. Have you seen the commercial with the woman doing Roller Derby? I wanted to see if I could get all the pads and braces that she wears, so I asked the clerk where the Roller Derby section was. She directed me to the Skateboard section. When I came back with my wrist guards, she looked at my left arm, with the dark purple bruises that almost look like a tattoo and my scarred elbow and asked “So, how long have you been doing Roller Derby?” I told her that the only extreme sport I do is walk (I think she thought I was embarrassed about the Roller Derby and was making a lame attempt to cover it up).
Thanks for your blog! p.s.- I think I saw Ampyra opening for the Misfits in 1982!

By: Patti Ann

Patti Ann — Wed, 11 Aug 2010 00:30:48 +0000

Odd Socks- I am loving ure site. I read about it this month in Momentum Magazine and ran (okay limped slowly) to my computer to find ure site. I believe laughter is the best medicine and the MonSter gives me plenty to laugh about! Like today, fell forward into bathrooom door and slid slowly down the door with my face pressed against it! How could that not be funny!
Been on ampyra for almost 10 weeks- my legs def feel lighter, easier to step, but its been extremely humid most of the weeks Ive been on it, so fingers crossed I’ll do better when it cools off!
Hope it “kicks” in for u and please keep posting ure funnies!

By: M.W.

M.W. — Tue, 10 Aug 2010 05:09:09 +0000

Dear Hubby has been on it a little over a week now. I’m not sure if he’s noticing an improvement but I think he is walking more.

I’ve posted about it and his difficulties in getting it on my blog.

By: Gina

Gina — Sun, 08 Aug 2010 18:47:55 +0000

I’ve been on Ampyra for about 5 weeks now. I have had MS for 29 years. It took about 25 days before I noticed a difference, not so much in walking, but just in my ability to stand. Before it was only after a few minutes of standing that I felt the need to find a chair, or I would be face-to-face with the floor. I’m definitely able to stand much longer now. Good luck, everybody!

By: Steve

Steve — Sun, 08 Aug 2010 16:31:23 +0000

I can’t say I’ve been one who has ever been accused of being normal however, after being on Ampyra for about 2 weeks I at least have returned to walking normal. It’s been a while since normal walking was a part of everyday life. Now that it has returned I’m looking forward to finding something else to bitch about! Just kidding now if I can only convince a COP my balance problem is due to MS and not the eight beers I had when I get pulled over…………..

By: My Odd Sock

My Odd Sock — Sun, 08 Aug 2010 02:41:34 +0000

Patti Ann,
Thanks for your Ampyra insight—this Odd Sock needs a little lift as I’m not feeling it. Will give it more time and let you know.
Thanks for reading and sharing (and yawning if you are like most readers of this site)!

By: Patti Ann

Patti Ann — Sat, 07 Aug 2010 19:58:49 +0000

Thurs has been 9 weeks ampyra for me. Odd part is I don’t feel like I am walking any faster- but it is a lot easier to take steps. My legs feel lighter and I don’t feel like I am walking through waist deep mud. Before I would step with left leg, push, then really push/ drag my right leg through the mud. I had to really swing my right hip to get that leg around. Within first days of taking ampyra I felt a difference. Also for two years I wore an AFO brace, total drop foot. When I was told I needed the brace, I cried, but when I got it, my foot was like ah- what were u waiting for? LOL But within two weeks of ampyra. all of sudden the brace felt uncomfortable, like it was holding/ choking my foot! So I took it off. I know it is working cause I don’t here that kitch kitch kitch sound, of my foot scraping the floor when I am walking and I haven’t tripped forward in weeks- fall sideways, backwards, yes, but I digress… the AFO used to prevent those kind of trips- but now the ampyra seems to be doing it!
THe best part is my legs used to twitch, jump, move, kick etc. all night long. My theory is the messages my brain was trying to send all day finally got through at night. Like oh did u want to avoid that puddle today, here u go and I’d wake up to my leg pointing straight in the air! Within a few days taking ampyra, my legs and I sleep through the night! If I complained to my neuro that i couldn’t sleep at night. because that’s when my legs were most active and she said here take ampyra- and that’s all it did, I’d still be happy.
Worst part- with a week of being on it- we were hit with a heat wave- with high humidity. SO I really don’t know what more this drug will do for me. But I do know, past summers, which haven’t even been as hot, I was stuck in bed. I have really been able to do more, in this heat then ever!
I can’t wait for it to cool off and hope for continued success. I don’t care if I need my cane for ever- I’ve come to terms with it, but I’d love to be more graceful!
Now if they could only develop a drug for balance? An ampryra II? LOL
Hope u have success- keep us posted!

By: Nilda Kuypers

Nilda Kuypers — Sun, 01 Aug 2010 20:38:43 +0000

Cool site-ul!