I don't know each individual test result, but my therapist did say I returned my fastest walking time so far, when he timed me yesterday. On a few different tests, he remarked on the substantial improvement over last week. The site manager (who travels around, visiting each participant clinic and meeting with our doctors) is even impressed enough by my progress that she also speculates I am on the real drug (not placebo) right now (for another week, then a switch to what we presume will be placebo for another three weeks).
I don't feel different, but the test results say there is some improvement. I was hoping I might actually be able to tell a marked difference if we were having positive outcomes from the study, but improvement is improvement, and I'll take it!
As for side effects, my overseeing doctor says I am the only one in the study that has reported most of the negatives I have. Now, to be fair, she says I am incredibly meticulous and it may well be that others are experiencing similar things, but they are so mild that they don't think to report them (she originally told me she needed to know EVERYTHING, like even if I had an itchy nose, so I am documenting even the most remote, far-fetched and mildest symptoms) or they don't even think about the possibility of those symptoms being medication-related, since many could simply be stroke-related anyway.
But even if I am the only one (we are probably only talking less than 50 people here, as the study is to only have about 68 participants, county-wide, and our local phase is only half filled so far) experiencing these symptoms, I'm not terribly surprised. When she told us this yesterday, my mom and I both responded, "So when have I ever done anything medically normally?"
There are at least two issues at play here. I would imagine I am one of the only brain stem stroke participants (very possibly, the only?) in the study. Apparently, even in the stroke world, brain stem strokes are a class unto themselves. Bluntly, there just aren't that many even semi-functional survivors out there! When someone (rarely) does survive, the symptoms and remaining deficits, are generally much more severe and different from the more common forms of stroke. I don't think it had sunken into my brain how bad things were until I told my story to a stoke survivor forum and I got back several replies about how my story stunned and amazed them all - this from a community of stroke survivors themselves! Talk about wake up call!
Secondly this is my body we are talking about here, and my body has never been known to do things "normally." As a dear friend (who has know me for 15-20 years) observed, "It wasn't good enough to just go and have a horse kind of average stroke. You had to go and have a zebra kind, because having any old stroke just wasn't what you do!" Yep, that about sums it up. Related, but two totally different animals in the same broad category.
Edited to add that weeks after this post was written, I came across a similar blog concept that much more fully explains the phrase "zebra" at My Life As A Zebra. :)
I am still on track with my month-worth of blogging posts over on my InfertilityMom blog. :) Yesterday's post (What NOT To Say to an Infertile Couple, and Why) already has more hits than any other post in my five years of blogging history there. Today's post is somewhat related, about forums, and including why Hannah's Prayer (infertility and miscarriage community I helped launch) is still so precious to me. I am especially excited about tomorrow's post about my friend Kendra and her strokes, so please come back and check there tomorrow!
But in your hearts set apart Christ as Lord. Always be prepared to give an answer to everyone who asks you to give the reason for the hope that you have. But do this with gentleness and respect, keeping a clear conscience, so that those who speak maliciously against your good behavior in Christ may be ashamed of their slander. It is better, if it is God’s will, to suffer for doing good than for doing evil. For Christ died for sins once for all, the righteous for the unrighteous, to bring you to God. He was put to death in the body but made alive by the Spirit... - 1 Peter 3:15-18
(Sorry I've been forgetting to post verses lately!)