[Susan Jacobson]

When I went into crisis years ago, I was initially given a high dose of prednisone. This helped with the breathing, but I kept getting worse in other ways..weaker, then couldn’t swallow – needed a feeding tube. My doc wasn’t doing anything- said the pred will kick in. Even the residents were saying I needed something else. I was finally given plex. 5 treatments didn’t work- they wanted to send me to a nursing home. The respiratory doc pushed for a 6th round over the objections of my neuro..thankfully that did the trick. I was in the hospital for a month. My veins were horrible- the blood would clot before they got enough out to test.  The whole thing was a nightmare. I think I have ptsd from it..

[Susan Jacobson]

Unfortunately, it certainly has changed things. I still see my friends, but they have much more stamina than I do. Even meeting for lunch for 2 hrs tires me out. They often want to do more than I’m able to do- ie. take a bus to the city, eat out, go to a play, walk around the city..forget that. Even walking around a mall after supper is too much for me.   Voice and palate issues have a major impact as well, as I start feeling oral weakness (in my palate) if I talk for a few minutes on the phone.  I have to make sure not to talk for any period of time to more than 1 person a day. If I overdo it, the weak palate feeling can remain for weeks. And if I really push it, my swallowing is affected.  It’s quite isolating..