This thread tastes of the dilemma which has lately colored my life as a caregiver. Steve's reaction was revulsive when I first broached CCSVI to him; he wouldn't even hear the information. After 3 years on the Vanderbilt Protocol, he was disappointed and sinking into the mindset of resignation to a fate of unchecked MS progression. Don't misunderstand, the Vanderbilt Protocol did him much good by drastically changing his trajectory of progression for the better...having no exposure in his life to those with advanced MS, he couldn't grasp that his progression had slowed way down compared to what it was before the protocol. MS being a multifactorial illness, addressing the chronic infection aspect has apparently run its course, done as much as it could do. My viewpoint was/is that other factors need to be tackled, but his viewpoint was that it was time to quit fighting the beast.
Steve finally agreed to go to Stanford, but it was only because I wanted it. That put me in a very tough spot. Should I have given in to his personal choice of resignation and adjust my expectations? Just thinking about that hurt me to the core, made me physically ill. But after all, he's the one with MS and everything that goes with it. OR, should I take charge and make the hard decision to push him into an invasive procedure he doesn't really want? After all, he has considerable cognitive dysfunction and has become depressed. Isn't it my responsibility to lead him in the right direction, because he needs a leader at this time in his life? And how much of my drive to help him is driven by pure love of him...and how much of it has to do with what I want to avoid for myself?
Thankfully, that dilemma was resolved in the most unexpected way, and Steve now actually wants to go to Stanford. Still, though, he refuses to get excited about it in order to avoid possible future disappointments. I don't blame him.
Joyce (aka cypriane)~caregiver and advocate in Dallas for Steve (SPMS)----"Enter through the narrowgate..."