My Column today is about how I STOPPED TAKING AMPYRA! I now know exactly what it does for me...it helps w overall nerve conduction so I can function & live independently.
(Stan is the Publisher of MSnewsChannel.com)
[JENNIFER]
I've been getting some HARD days Stan!! The hardest in my 20 years with ms. There was an overlap with my financial aid & I ran out of Ampyra on Sunday.
I've been on it since 2006-when it was still in clinical trial & have never been without it.
Don't know how long it'll take me to get back to my normal but the journey back has started.
My lesson learned: NEVER run out of Ampyra!
[STAN]
Tell us more about what happened when you ran out of Ampyra
[JENNIFER]
No problem! You're sweet, I needed that after the week i've been thru... Let's see, since no Ampyra: @ 1st I just needed help doing things i'd been able to do before: getting in & out of the bathroom mainly & have been unable to get in the car since Tues-driver or passenger. I normally live independently (in a scooter full time), w my kids w some help w cleaning, laundry, etc. i could do nothing. At one point-Wed afternoon I think I had to call the firefighters to get me off the couch & back on my scooter. Then by Wed night I could no longer get to the bathroom @ all, couldn't even use a stand alone 3-in-1 commode. That's when my sister bought me diapers. I had had several accidents by then. I also fell trying to transfer from scooter into bed & had to call my boyfriends again to get me up. On Wed my kids go to their dads but my son had the flu so stayed w me Wed night so I wouldn't b alone. By Thurs I knew I couldn't b home alone & my son needed to go to his dads. (On Wed I knew my funding had been approved & my Ampyra was due to arrive Fri via ups!) So Thurs mid morning my mom came w plans to stay till I was 'back to normal'. Thurs was a horrific roundtable of diaper changes & sitting around-mostly in my scooter as I was afraid to transfer to the couch by then. Fri comes & we're all just holding our breath waiting for ups. Finally comes around 1.30 & we're crying @ this point, tho having no idea how long it's gonna take me to get back to normal as i've never been off it since 2006. So I take 1 & lay down. Later yest evening I took another Ampyra. Well I woke @ 2am having to pee & did so in the diaper but didn't want to wake my mom to change it, so I proceed to do it myself! I thought 'give it a try' so I frikkin got onto my toilet!!! So... I take another Ampyra & proceed to dress myself. Mind u it's been a diaper & pj shorts since Wed. I go back to bed till 5.45, use the restroom & now i'm dressed & on the couch waiting for my mom to get up so I can shock the shit out of her :)!! After just 2 (well now 3) Ampyra my nightmare ordeal is over. It was a frightening realization of what my life might b like if not for Ampyra but one that'll I will never experience again cuz I will NEVER let myself run out of a medication apparently critical for my independence! And that's my Ampyra story. If you're on it NEVER run out & if you're not but have an idea it could make your life a little easier, walking or not, talk to your Neuro about trying it! For me, I now know, it's a miracle pill.
[STAN]
I'm confused Jennifer! I thought Ampyra was just for walking?
[JENNIFER]That's what it's called, The Walking Pill, but I haven't been able to walk since 2010 pretty much & I now know exactly what it does for me...it helps w overall nerve conduction so I can function & live indepently. Thx Stan! I'm just so lucky that we live in CA now & my sister lives 5 houses down & my mom's about a mile or 2 away. I could NOT have gotten thru this without them!!
