My Tysabri Diary...

Yesterday was a milestone for me that I've crossed with my recovery. Since my horrible relapse in June of 05, I have been confined to a wheelchair, and after my two very bad falls in September of 06 (which landed me in the hospital-in need of a caregiver if I was to return home), as I could no longer lift myself out of my w/c (and I'm thin!) to make a transfer (chair transfer) on my own, as I could no longer stand for more than a few seconds without my caregiver's assistance.

Well, after my Tysabri infusion on 10/16/06, my balance has started improving, my short term memory has started improving, I can now move my feet about an inch from side to side (I even lifted my right foot one time about an inch), and I can wiggle my toes bilaterally a little bit too. These 'physical' improvements may not seem like much to others, but for a person that had no ability to move her lower extremities at all for approximately one year, and has to be lifted and placed out of her w/c, these small improvements are huge.

I've been doing physical therapy exercises too (3 x's a day = morning, noon, and night), which stretch the tendons in the back of my legs so that they don't atrophy (I hate doing those as they hurt like hell, but I do them anyway because I know they are helping me)...I also do strengthening exercises for my arms and thighs 3 x's a day.

So guess what I did yesterday, on my own with no assistance from my caregiver (other than to stand near me to catch me if I fell)? I stood up for the first time since September '06, while holding onto a grab-bar, and put myself on the toilet (I know, gross-but when you haven't been able to do that anymore on your own, this was a GREAT accomplishment for me). Now came the scarey part, having to stand again on my own while holding the grab-bar, and praying my knees don't buckle again leading to a fall, and getting back in my w/c on my own with no assistance. Challenge city, but Okay Lauren (I said to myself while praying silently, "Please God, don't let me fall"), on 3.....1.....2......3 (gulp!), I grabbed the grab-bar with my left hand (while pulling up), and at the same time-placed my right hand on my w/c seat (while pushing up), and I stood up! (long enough to turn and pivot back into my w/c)...on my own!!!

My caregiver was applauding me as if I just hit a grand slam-bases loaded-home run! LOL

Of course, my legs were in total spasm, and he had to bend them for me (they turn into tree trunks, literally when they spasm), in order to get them onto the foot pedal of my chair, but hey, I stood up without my caregiver's help, and I did that 3 times yesterday!!! Wooooohoooooo!

And, I was able to do the same thing (while holding onto my caregiver's arm with my left hand, and pushing up on my w/c's arm with my right hand), to stand up long enough to get into a sitting position on my bed, and I did that too! Yeeeeeeehaaaaaaaaaw!!!

I cannot express the estatic feelings I felt in being able to re-gain some of what I lost to MS, with Tysabri's help.

Naturally, I over-did yesterday due to my enthusiasm (my bad), and this morning I needed assistance getting out of bed, into my w/c, and into the bathroom...but after my p.t. excercies, I am ready to take on the task of standing on my own again...come on second infusion of Tysabri in November! OH YEAH......... :)

(((hugs)))
Love, Lauren
A very proud member of www.MSpatientsforchoice.org