My Tysabri Diary...

Well...I could not take another step late Sunday night, but I took a tiny one Monday with a lot of effort again on my part.

However, I am not discouraged in the least, because I could stand Monday unassisted by my caregiver for up to 1 and 1/2 minutes while holding onto a grab-bar (he had a stopwatch-lol), without my legs spasming and without my knees buckling under me during the time I was standing. Nice trade off if you ask me, considering I could only do this for a few seconds the day before my 2nd Tysabri infusion (11/16)!

My neurologist called me this morning (at 7:30 a.m.- ugh!) to see how Tysabri was working out for me...I told her it was THE BEST BIRTHDAY GIFT I EVER RECEIVED IN MY ENTIRE LIFE! I started to cry happy tears a bit when I thanked her profusely in believing in me and for believing in Tysabri, but especially for allowing me the opportunity to have Tysabri again and for the chance of making some physical improvements and improving my quality of life. I explained to her all of my small and slow, but significant, improvements while on Tysabri, and that each new day brings even more hope to me, and that I expect (hope) to experience even more improvements with subsequent infusions. She said she was glad and happy for me, wished me a happy birthday and then ended the call (I wondered for a few minutes after our call ended if she only called me so that she could report my progress to the ins. dept. of Kaiser in order to justify them authorizing further infusions of Tysabri). I don't know - that's a distinct possibility - lol, but right now, I really don't care - it's my birthday today and I'm too happy to "over-analyze" anything!

Thank you again for all of your well wishes, and to each of you that sent me Happy Birthday wishes for today. Some of you are just so unbelieveably wonderful and caring individuals, my heart is overflowing with great joy and a renewed determination not to waste one single minute that is further granted to me. Happy Thanksgiving to each of you!

Come on December!...Go Tysabri! Wooooohooooo!

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

My Tysabri Diary...

I took my first step last night in over a year!!! Woooohoooooo! ...,

It was only one step with my right foot (with me hanging onto my caregiver, and my caregiver holding me around my waist-in the event I fell)..and lifting my foot to take that step was like lifting a 25 lb weight with only one finger (it took all the strength and concentration I had, and it wasn't very graceful), but I did it! :)

It's a good thing he had me by the waist as I collapsed afterwards (my stupid left foot was just plain frozen and would not move at all), but I started crying happy tears of joy. My hopes to walk again with Tysabri's help just went off the scale! Now I'm pushing my caregiver for more p.t. exercises..but I'm taking it slow, so no worries. I couldn't take that one step again yet to day, but maybe I can try again later tonight...

I wish for each of you and your families a wonderful and Happy Thanksgiving holiday...I have sooo much to be thankful for this year-including, but not limited to, feeling so very blessed that I will be rewarded by the continuing hopes I have with Tysabri.

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

My Tysabri Diary...

I had my second Tysabri infusion yesterday, 11/16, again ZERO side effects, yay! :)

I took it easy last night as the drive for my caregiver into the city for my infusion (which normally takes 90 mins one way, took an unbelieveable and grueling 2 1/2 hrs to reach the infusion clinic (one of the connecting freeways [the 210] was shut down, all 4 lanes this am), 2 1/2 hrs for the infusion as they were late starting me as I was late in arriving, as were most patients arriving out of the city, and 1 1/2 hrs to get back home. No side effects again, just a slight headache (which I believe had to do with being stuck in traffic all day which was barely moving at 2 mph)...., I sent our website my Tysabri Lot # and Exp. date and I'm keeping the cute little Tysabri vial that once held it's liquid gold, now flowing in my veins :)

On a side note, more problems plague Kaiser (see the article: IT disaster at Kaiser), as well as a local news story that aired [while I was receiving my Tysabri infusion!] wherein after So. Calif. Kaiser drs treated a homeless woman for 3 days (I believe), and then Kaiser in Bellflower transported her via ambulance to the middle of 'Skid Row', just dropped her off and left her there. I don't remember any other details of this news story today, other than a press conf. held by LA City Attorney Rocky Delgadillo BLASTING Kaiser for their unspeakable actions (he was major pi**ed off-I think he even filed criminal misdeamor charges against Kaiser today?), with Kaiser issuing a pathetic apology/statement indicating they won't do that anymore unless there is someone from an agency to rendevous with and pick up the continuing care when they drop a homeless patient/person off again...geeee ya think? Sheesh! CA health care at it's finest...NOT! Here's the story: http://www.usatoday.com/news/nation/2006-11-16-homeless-dumping-skidrow_x.htm

Okay, so today I promise I won't over-do (fingers crossed behind my back-heehee), and just do my p.t. exercises (maybe I'll just increase the repetitions from 7 to 10 tomorrow), yeeehaaaw!

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

My Tysabri Diary...

I'm taking it slow today..my legs are kind of cramping more than usual ... I think it might be due to all the new muscle I'm building up and working lately...so today I'm letting my caregiver lift me in and out of my chair (gotta make him earn his keep, right? heehee). I don't see this as a 'setback', I see it as a 'day off' from overdoing! LOL (I might sneak in a lift-or 2-if my legs feel up to it after I finish my p.t. excercises).

But come on Thursday, 11/16...inf. #2, I'm ready! As we used to say as cheerleaders to the opposing team.."BRING IT ON!" :)

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

My Tysabri Diary...

Thursday, Nov. 9th...

I totally freaked my caregiver out this am (lol), when he got up, and found me 1) out of bed (which I accomplished with a lot of difficulty on my part-I won't try THAT again until after my 2nd infusion) and 2) merrily sitting on the toilet with a fresh cup of coffee that I made for myself (while he was snooooooring away in his room at the other end of the house)! First words out of his mouth were, "What the &#**......How did you do that???" (I think I detected a slight "shrill" in his voice-lol, and his unspoken chastisement of, "but what if you had fallen?"...I know, I know, I shouldn't have tried that unless he was nearby if I had fallen-my bad, he's right-BUT the look of surprise on his face and high pitch in his voice still cracked me up!).

Not much more improvement for me, other than what I've reported previously, but my small improvements have been sustained..for those, I am soo very grateful...

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

My Tysabi diary...

I am posting this on my Blog for a friend of mine. He helps a lot of us with MS by providing information re: MS...many people (MS'ers) are asking him for Tysabri experiences by those of us on Tysabri therapy, therefore myself and many of my friends took his Tysabri poll, and sent same to him so that we could help our fellow MS'ers. IF you are currently on Tysabri, you can help others too by taking the Tysabri poll (anonymously if you wish). For more information re: this Tysabri Poll, see excerpts from the email below that I received today from our website:

Folks,

“Stu’s Views and MS Related News” is an email sent every few days by Stuart Schlossman in Florida to hundreds of MS patients around the country. Yesterday, he included a poll asking those who are already being infused with Tysabri to report their initial findings. He asked us to forward the poll question to everyone on our email list, which I am now doing (pasted below my signature). I have NOT provided Stu with your email addresses, although some of you may already be getting his emails.

Please send a paragraph or so to Stu at: stuartschlossman@bellsouth.net.

You can also ask him to add you to his email distribution list if you would like to receive a copy of his email newsletter.

It is important that Stu hear from as many Tysabri patients as possible so that he can get a balanced and broad view of how folks are doing after 1, 2, or even (for a few of you) 3 infusions.

Please also:
forward this email to everyone you know who is being infused;
post a request for responses on MS websites you visit;
bring copies to your next infusion to give to the other patients who are also getting infused; and
if you know patients on Tysabri who do not have access to a computer, please speak with them and send a response on their behalf.

Remember–for more information on Tysabri and assistance with TOUCH enrollment or insurance reimbursement difficulties, please go to our website: mspatientsforchoice.org.
Thanks,
David

Stu's Views and MS Related News
Bringing You Knowledge and Info That Can Help You To Better Understand Your Illness
Knowledge IS Power
Disclaimer: This website and all related pages and blogs is solely my own personal views
and research.
I am not an expert in the field of MS as a Neurologist
___________________________________________
Subject : Tysabri POLL for those having done Tysabri within the last 3 months.
Poll Question: How are you now feeling since beginning Tysabri?

Many people receiving my e-Newsletter have been asking what I am hearing of Tysabri and it's effect and/or benefit on those now using this treatment. If you are using Tysabri and would like to participate in this NON-Documented Poll, then please reply directly to me:stuartschlossman@bellsouth.net.

Please tell us of your experience on the day-of your infusion(s), how you felt after the infusion and any benefits that you have yet noticed. Also, to advise if you have had any side effects.

YOUR identity is strictly confidential unless you write to me that it is okay to use your name. Your answers though, might be posted in my newsletter: Stu's Views and MS Related News or be posted within my web-blog Archives: www.msviewsandrelatednews.com/blog5/

I do hope that I receive enough answers to provide a fair percentage to those who read the e-newsletter.

Thanking you in advance for your participation.

Kindly,

Stuart Schlossman
_________________________
I received a call today from my infusion center, scheduling my second Tysabri infusion for 11/16/06, what a wonderful early birthday present!, Woohoo..
(((hugs)))
Love, Lauren
A very proud member of www.MSpatientsforchoice.org

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