Wednesday, April 1, 2009

My Tysabri Story

Tomorrow I am giving my speech at a patient education program sponsored by Biogen Idec, the makers of the drug Tysabri.
I have been on Tysabri for 2 years and my body has gone thru many changes. All for the positive.
A couple of things I would like to clear up though. I was NEVER wheelchair bound. I don't ever want to mislead people.
I live in a two story home. A home we purchased two months before my diagnosis. They thought it was a neck problem that would go away with surgery.
I was walking with a cane before my diagnosis and crashed and burned shortly thereafter. My life sucked very quickly. I lost my job, couldn't function like I used to ( too many examples but you all know what I am talking about). I NEVER left my home with the use of my wheelchair because I always fell or was completely exhausted. I had two years of this and it kept getting worse. I could hardly cut my food. My husabnd had to do that for me.
Once I began Tysabri my body began changing and I was able to function better. After six months of being on Tysabri I walked into the hospital for the first time in 3 years. A huge thing. My wheelchair now sits in my living room collecting dust. I refuse to dust it.

I went snow skiing for the first time in my life STANDING in January 2008. I travel by myself and I stand while cooking dinner every night. Right now I am training to do the MS Walk in 2010. It's 3 miles and I am determined to do it. I have an entire year to train.

Today I rode my exercise bike 3 miles. The most I have ever ridden. I only got the bike in December and the first time I sat on it my husband had to get my legs started. There is no way I can say Tysabri is not responsible for this. But it is also alot of hardwork and determination on my part. I am not going down without a fight.
I realize I may not be able to get out of bed tomorrow. Welcome to the world of MS. I know I may have to use that wheelchair again.
Right now, I am loving life. I've been rock bottom and I am fighting back.

If anybody has questions about my progress with Tysabri, I would more than happy to share all the details. I might even share my speech with you ( as long as you don't mimic me as I give it) LOL

I am so in love with Tysabri for what it has done for me. All drugs have risks. Betaseron caused my liver to misfunction. Copaxone screwed up my kidneys.

I was a pedestrian in a crosswalk hit by a car .( And the son of a bitch left me there ) There are risks in life.

I am delighted I canshare my story with people considering a change in meds. But, people, the decision, is your and yours alone. Please don't let anyone influence you in any way, even my story.


Tell a friend !

1 comment:

Libby said...

cathy--please, can you email me? my ms dr said today yes she will prescribe tysabri for me, now i just need to let her know about the touch form that needs filled out fist & everything...either email, or let me have you phone #, i have free ld, & this would be a worthy cause even if i didnt!