Hope everyone out there is in a good place. I pray for those I follow, and I wish you happiness.
Well I havenât written about my 6 month infusion yet because my attention has been pulled in a lot of directions lately. A trip 250 miles north to see my parents, followed by 2 trips 120 miles south for benchmark tests and my monthly infusion and three days later a MRI. That was followed by another trip to my parents, interrupted temporarily by a wedding 90 miles away, followed by driving to another wedding 1100 miles north. All this occurred over three and a half weeks! Next week I head north again to help my parents move.  Whew!
On the 22nd I had my 6th month infusion and benchmark testing. I started with the benchmarks and a visit with Dr. Langer. Remember that neither the doctor nor I know if I am on Tysabri or a placebo. Letâs talk about my numbers:
Benchmark 1- How far can I walk with my cane in 6 minutes?
Feb 7: 278m and July 22: 365m
This to me is a BIG improvement because I was not struggling like I did in February, when I remember doing the âFrankenstein stalkâ. This is where I would swing my leg forward instead of lifting my leg and stepping forward. This time I did not find it a struggle to walk for 6 minutes.  I did not push myself to walk at a fast pace, just a steady pace. I do not remember if I pushed myself in February for speed. I did push to go as far as possible.
After I walk for 6 minutes, I continue to walk to see if I can reach 500 meters total. In February I remember holding onto the wall, telling people to step aside so I would not have to walk around them, and finally I just said âIâm done.â, and sat down on the ground leaning against the wall. This time I easily walked to 500 meters. Woo Woo!
Every summer I have gotten weaker and when I return to work in the fall, I am walking noticeably slower and relying more and more on the wheel chair. Part of it I think has been the stress caused by the heat of summer (90s to 110 degrees). At least the humidity is low. Part of it has been the lack of physical activity because I am not working while school is out and I do not have somewhere I need to be every day.Â
I have had relapses in summers past. Years ago, 5 years I think, when I had a relapse in late June, my doctor prescribed a steroid infusion treatment. 1 gram of steroids pushed over 30 minutes for 3 days straight. I did not sleep for 4 days and on day 5, I blew up with swelling caused by water weight I guess. This swelling was very painful, especially in my joints. It was more than a few weeks before I felt normal. I swore I would never do a steroid treatment again unless the relapse was making me feel worse than the steroids made me feel.Â
I have relapsed since then and I have not call the doctor because what was she going to do that would improve how I felt? I have been told that I have risked my health, and I have been scolded, but my treatment is MY treatment and I will decide cost/benefit. It is my choice.
Oh what a rant! Letâs get back to talking about my numbers.
Benchmark 2 - Peg Test-how fast can I do it?
Feb-right-27.8sec    July- right-22.2sec Â
    left-21sec              left-23.9sec
The peg test involves picking up inch long pegs and placing them into holes then removing them again. I remember being sloppy about picking up the pegs in February. I would knock pegs out of the swallow bowl while trying to pick up a peg. The pegs would fall on to the floor and Ryan and my husband would pick them up and place them back in the bowl while I continued to place the pegs as quickly as possible.
My time on my left hand has improved but my time on the right has actually declined. The difference this time was I did not feel as sloppy about picking up the pegs. I didnât knock one out bowl more than once or twice.Â
Next Benchmark is the Symbol Digit Modality test. This test was developed as part of a rating scale for Huntingtonâs disease. A modified version is used as a neuropsychological test for MS.
Benchmark 3 - Symbols Test â how many matches in 90 seconds?
Feb - 49 correct out of 49 attempted
July - 51 correct out of 51 attempted
This test is kind of frustrating to me because each time I take it I am reminded of how much I have lost in my ability to memorize code. I use to love to do things like this and quickly learn the symbol patterns.  I was great at those games where you turn over 2 cards trying to make a match. No more.
I also use to remember with no effort how to get back to any place I had been to within a few years. Now when traveling, I cannot remember how to get back to the freeway if I canât see the freeway unless I have traveled the path multiple times. Now my parents are moving to a new home in a new community and I am very aware that I need to study how to get there and back. Thank goodness for GPS.
 Okay, now looking at the benchmarks, am I getting better or not? Am I on the drug or the placebo?Â
I have asked myself more than once, if the treatments I have had in the last 7 years have slowed the progression of my disease, or hastened it? As I have said, before being diagnosed I had had symptoms I now connect to MS since high school (35 years). I did have some lost some of my mobility, canât run canât jump, before being diagnosed but in seven years I have gone from being able to walk unassisted for 2, 3 miles, being able to clean my home in one session, being able to stand and cook a special meal to not being able to do any of those things.
This summer I have felt better than I have in the last few years. I still canât run or jump, but I can walk further and I have been more adventurous in the kitchen. I have started to clean out those closets than contain stuff I havenât used in more than 5 years or stuff I just donât need. I was not exhausted by the last three weeks!!!
Is it Tysabri or no treatment at all? We will have to wait and see.