Back from the trip. It went pretty much like I thought it would. I would be ok just sitting, but it is literally taking maybe 100 feet of walking on flat ground now and my legs just stop working right. I don't mean they are fine for the first 100 either. It's getting tough to walk anymore than just room to room in the house period. I pretty much confirmed by the way I felt ,as well as everyone that we camp with, that I have slipped quite a bit here recently. If this keeps up unabated for much longer I can guarantee I will need to change things up major at work. Everyone who was camping with us who hadn't seen me in a few months was taken aback by how hard it was for me to get around the camp and how hard it was to get up in the camper.
To put it in perspective, I could not finish a game of cornhole (there's a real strenuous activity) after sitting around for a couple of hours. I couldn't bend over to pick up the bean bags without falling over after about 3 rounds of throws. It was pretty bad. Just sitting around talking I was pretty ok, but even having conversations where everyone is laughing and talking loudly was enough to make me get so dizzy I didn't even want to move my head.
Enough 'tests' for this ol' boy to see what I can actually do. The answer is very obvious now and it is simply 'not very much at all'. So unless I'm sitting and not moving, I'm doing very bad with leg strength, balance, dizziness, and ON. Time for me to move on I think. I'm going to start discussions with my doctor on Monday. If he suggests a round of steroids I'll do it, but we tried that once early on and it literally had no affect on me at all. If he wants to try that one time to stay in and see if Tovaxin shows up I'll do it, but if something big doesn't happen I feel it's time for me to try the next thing. Avonex wasn't it for me, Tovaxin sure doesn't seem to be, so I just have to try something else. Just getting a little bit worse every day is just not going to get it for me to feel like I'm doing all I can to try and save my life. There is not one functional system or ability that has not gotten worse. I think if Tovaxin was stopping the progression they wouldn't all be slipping, but they are. Even bladder and bowels are getting worse. drank two beers the entire four days, had no fluids after 8:00pm, and still pissed the bed every night. Good thing I planned ahead and brought some chux or my bed in my camper would still be at the campsite!
I'm not doing too bad emotionally. I have a plan now and it's not just waiting to see if my progression stops. It hasn't and I need to just admit it and move on. That's so hard to definitively say, but it's walking and talking like a duck, so I'll call it a duck. I mean it takes a while to get everything ready for JH, so if something good happens in the next couple of months I can always cancel and not go through with it. No fun, but reality is reality and that's where I need to stay. It just isn't working for me and that seems to be that.