Today I get to start the real drug with the clinical trial. I’m excited because I think I’ve been on a placebo for the past few years. Guess I’ll find out soon if I feel any different.
So, as part of this trial every few months I have the full work up, 2 neurologists, like 12 vials of blood taken, my 2 hour infusion, etc. I also have to walk…
So, I’m supposed to walk 20 feet (with a walker), and then I’m supposed to walk any distance for 6 minutes. I couldn’t do either today. Not even 20 feet! It sucks. I tried, but only made it about 13 feet before I had to sit.
I think I’m just having a weak day, in general, but the other part of the problem is spasticity. If you aren’t familiar with that term, it is basically when the muscles override the brain.
A medicine which helps this is called Baclofen. So, I take this in pill form, but today they talked to me about a baclofen pump. It would be surgically implanted in my lower abdomen/side, and a catheter connects it directly to the spinal cord.
It is programmable, so it could deliver more medicine at night, or in the morning, or whatever. Since it goes directly to the spinal cord, drowsiness, and some of the other side effects are minimized.
Anyway, all that to ask:
I already use wheels for legs.
I work out by shocking my muscles with my ems.
I use braces/splints to stretch.
My hip is metal, plastic, and bone.
At what point do I become more machine than human, and doesn’t that make me some kind of superhero?
I’ve got to think of a catchy hero name…