Living With MS

Discussing all aspects of Multiple Sclerosis, various treatments, including accurate information regarding Tysabri.

Wednesday, November 01, 2006


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

14 Comments:

  • At 12:30 PM, Blogger mdmhvonpa said…

    Baby-steps ... one at a time. Soon enough, we expect to see you winning the boston AND ny marathon. Mkay? :)

     
  • At 3:56 PM, Anonymous Anonymous said…

    EEEHHHHHHHAAAAAAAA
    It's only the begining, we will both be on dancing with the stars next year. I can hear your enthusiasim, keep up the hard work of PT. Where did Michael go?
    Karyl

     
  • At 7:29 PM, Anonymous Anonymous said…

    Great news Lauren! I am so happy for you! I have felt an amazing difference since my second infusion.....cant wait for number 3. I only hope this isnt a dream because I feel like I just got back the last ten years of my life.
    Keep up the PT. Good things are ahead!
    Penny

     
  • At 8:35 AM, Anonymous Anonymous said…

    I am sitting in a training classroom at Biogen Idec in NC with the rest of my customer service new hire class. I have MS as well, but my symptoms are milder than yours [by a lot.]

    Some question were asked in training about why would people risk PML to take Tysabri, so I went on a google search and found your blog.

    Thank you. The last few blogs here about what you've experienced since your infusion in October have cleared up any questions.

    I have a platelet disorder also and cann't take interferons, so I've been waiting for Tysabri myself. It's a joyous thing to read that someone is experiencing such a strong recovery of ability, so swiftly.

     
  • At 6:16 PM, Anonymous Anonymous said…

    Lauren that's so great!!! There is nothing like doing the "little" things that makes us stronger! I love your enthusiasm!! Your my inspiration!
    Cyndee

     
  • At 11:01 AM, Blogger Lauren said…

    mdmhvonpa- thank you so much for you encouragement and kind words...I can't wait to take a baby 'step'! haha, btw, why no mention of me and Tysabri on your "Roundup" page? I'm so hurt, ya big meanie (just kidding)...I love to read the nice comments you leave on my Blog. Take care now, Lauren :)

     
  • At 11:06 AM, Blogger Lauren said…

    Karyl...dancing, AAAHHH, I remember dancing. LOVED it...you and I both will be dancing again soon, with the help of Tysabri..good thing I didn't throw away all my really cute dancing shoes! ;) Take care now...Lauren

     
  • At 11:14 AM, Blogger Lauren said…

    Thank you SO much Penny, and I'm excited for you too! Tysabri is AMAZING isn't it? You got back TEN years? Heck, I'd be happy with ONE year! Keep me posted on your progress girlfriend..and could you and everyone getting infused with Tysabri, do me a favor, PLEASE? When you arrive for your infusion, ASK THEM TO PROVIDE YOU WITH THE LOT# AND EXPIRATION DATE OF YOUR TYSABRI VIAL, AND EMAIL ME THE INFO, OK? (cont'd...)

     
  • At 11:21 AM, Blogger Lauren said…

    con't...each patient is entitled to this info (but please ask when you first arrive, so that after the vial is mixed, they don't place it in a Sharp's container, rendering the vial irretreivable). Please ask as many Tysabri users to do this (ask others at the infusion site too!) Our website is keeping track of the Lot#'s and Exp. Dates so we can calculate how many MS'ers are on Tysabri so that we can share this information (con't)...

     
  • At 11:26 AM, Blogger Lauren said…

    with others looking for same. Again, PLEASE email me at LGLBGL2003@AOL.com with just the Lot# and the Exp. Date from your Tysabri vial from EACH infusion you have, okie dokie artichokee? ;) Anonymous info is welcome too on my Blog..we can use that too....ALL my best to you Penny, and thank you again! Lauren :)

     
  • At 11:39 AM, Blogger Lauren said…

    Hi anonymous, thank you soo much for your comments...I am glad I could help you and your co-workers understand why most MS'ers are NOT afraid of PML, its just too rare, and with the TOUCH program requiring a confirmed dx of MS, a non-compromised immune system, and administration of Tysabri as a monotherapy only, the odds of getting hit by a moving bus are GREATER than EVER developing the rare PML! Thanks again for your post-BEST wishes ALWAYS, Lauren :)

     
  • At 11:44 AM, Blogger Lauren said…

    Woohoo Cyndee! :) I can hardly wait to hear of your Tysabri experiences when you are ready to start it, thank you SO very much for your comments honey, take good care now...sending you my VERY BEST, always...Lauren :)

     
  • At 3:11 PM, Anonymous Anonymous said…

    Lauren: I just got connected with your blog with my Google alert on Tysabri. My daughter, 26 yrs., is in the insurance queue for the approval of Tysabri. We[her parents] are very interested in others' experiences and your blog is very special for this topic. I will be reading more over the days in your future which looks brighter with every read. Thank you for posting so many of your thoughts and feelings. You have a great sense of humor. I wish you good days ahead and look forward to reading your own words and accounts. Deb

     
  • At 3:05 PM, Blogger Lauren said…

    Thanks soo much Deb. Your daughter is very blessed to have parents like you who want to understand their child's disease and therapy better...this alone will help her expotentially in the long run. Lauren :)

     

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