Alex and others,
Botox; As the Dr's mentioned... The first round was not tremendously successful. Was probably semi-effective for several weeks, but then seemed to dissipate quickly. To compensate I went back to glycopyrrolate (1MG 2x day), but I had to increase to 3x day. I go back for the second round in about a month. If that doesn't hold up, I don't imagine I'll continue. The injections a somewhat painful. Have your CALS hand to squeeze.
I'm also using a nebulizer at least twice a day with Ipratropium Bromide. Leaves me with an incredibly dry mouth, but I'll take that over the bathroom every two to three hours for twenty or thirty minutes a visit. That was getting really exhaustive, especially over a twenty four hour day. Not so bad now.
Yes, it sounds as if you are more advanced than myself. I'm not quite a year since dx, but slurring started a year fourteen or fifteen months ago.
White goop... All of my extractions have been of a thick white composition. I presume it's predominately mucus. It seems to me that both the nebulizer and the script only seem in effect for about six hours each. So I try to take both within an hour of each other. I've noticed that if I get off schedule with them, that my mouth starts to pool with one or the other (mucus or Sylvia). Based on whichever I took longer ago, dictates what to take now. Usually, I don't fall asleep till the wee hours, but when I do I sleep in for the morning. Often with a very dry mouth (sleeping with open mouth), but I let that ride for as many hours as I can before heading to the bathroom for the first extraction of the day. Of which visits are currently down to two, maybe three, a day. As a result I find myself with a bit more energy in the day.
Just several days ago I found a small-ish ball of white goop stuck to the end of the suction wand. First time for that. No others so far, but I'm on the look out!!!
Mobility is pretty good. Mornings being the worst. Really unstable, but I can get from here to there with the cane and hanging on to walls and furniture. The rest of the day I cruise, by comparison, around the house like I own it... Oh wait, I do. However, if we do go out, hospital or maybe a quick trip to shop, I cane or snag one of those electric scooters, usually both. For the most part though... I guess you have to say that I'm 'couch ridden'. And then, as I'm often up till all hours, I frequently end up sleeping there/here.
BTW... You are now a group of one on my friend list. Your message did get through, I just hadn't been on site for a few, maybe several, days. Keeping track of time these days doesn't seem a priority.
I think I've touched base on most points. Talk atcha later,
Bob