Sue Lawrence's Tysabri Diary
April 28, 2008 As I have now been on Tysabri for a year, a friend of mine asked me a couple of really great questions: What can you do now that you couldn't do a year ago, and what are your plans for the next year?
It took me several days to formulate answers to his questions. Once I had answers, I thought this was probably the perfect place to display those responses.
What can you do now that you couldn't do a year ago?
I could take up a lot of space listing you all of the activities I can do now that I couldn't last year. But I think the biggest thing that I can say is that there is "predictability" to my life. MS poses different problems for you different days- at least for me. There were always the certainties: spasticity, weakness, weeble-wobble walk, fatigue, pain, cognition problems. But every morning I got to find out how badly each one would affect me that day. One day could be a "well, I can get the laundry done today, maybe tomorrow I can vacuum", while the next day would be, "somebody help me out of bed, I need to sit in the recliner".
Now, it is predictable that I have none of the above problems. Well, I am still working on rebuilding the muscles, but I am no longer restricted because of MS. I do occasionally have small symptoms: a small amount of fatigue that could require a nap or difficulties with cognition. But, they are completely predictable- way too much stress or way over-exerting myself. If I do have to deal with them, it is a day or two at the most. Very often these will affect me more when it is close to the time for my next infusion. Then, it is right back to being a "normal person".
What are your plans for the next year?
My answer for this is probably a little obvious, stay on Tysabri!!!!! Beyond that, I want to work on getting better muscle control and strength. Although I can now ride a bike, one could tell that I haven't done it for a while. Although I can swim again, I tire very quickly. Although I can mow the lawn, I need a break in the middle. The way that I look at it is that it took me 17 years to get into the decrepit position I was in with MS. Even though I have this drug that is making me better, things aren't going to change over night and they are going to take work to get there.
So, I gleefully look at this year to be positive and gainful!
Sue.