Our trip to the SCI Unit was interesting, eye opening, helpful and sad. It seems that there is a lesion causing all of this, and it did not respond to IV steroids. It is likely caused by going off Tysabri and taking a drug holiday. It seems these changes are going to be fairly permanent as we are now 2 months in with very little improvement.
He is now fighting for his freedom at every turn. What does that look like – well it looks like him refusing to use his walker and instead ending up falling down many times a week. It means him dragging his butt up into his truck rather than use the very expensive turnout chair that the VA so graciously installed for us. It means hauling himself up the 4 steps in the garage rather than allowing me to push him up the beautiful new ramp to the front door. It means ignoring me when I am just trying to keep him safe. It means laughing in my face and not responding when I try to reason with him.
He is fighting for freedom and I am so frustrated I could SCREAM. Thankful I get a break this weekend as he is staying with the neighbors for 2 nights and I am going out of town for a movie shoot. It will be a roughing it kind of weekend in a cabin with heat but no running water. But it will be a weekend when I am only responsible for my own welfare and safety and no one will be defying me and fighting me at every turn.
I wish he could have his freedom back and I could let him be. But for his safety I can’t.