1. The first thing I learned is there is no cure for Multiple Sclerosis, but everyone thinks he will get better.
2. Secondary progressive MS means a downward spiral to the worst possible scenario you can think of happening.
3. There is no cure for MS.
4. No one really cares. They are just glad it’s not them.
5. When asked point-blank for help, MS organizations do a few token things to make them feel better. They don’t really help in ways that are needed. There is no such thing as help.
6. So-called friends stop visiting. Leaving the MS patient very lonely and therefore more apt to drive the caregiver crazy.
7. It’s impossible to do dishes and listen to him ramble on about something on the TV I didn’t see or hear because I was doing dishes and can’t see or hear the TV much less his mumbles over running water. No one else is going to do the dishes.
8. Caregivers never get a break from the daily insanity.
9. I’m always terrified. You can learn to live with fear.
   
10. I cry and cuss much more than I ever used to.
11. I miss hugs. He used to hug me every day.
12. You can’t lose weight when you are always stressed.

     There are more things but I figured 12 was enough. You all have a good one.

     The Curmudgeon says he’s finding it easier to get up and down from the floor.  (We have two dogs they like him to get on their level from time to time.)  This may be true or wishful thinking on his part, we shall see.

     I’m still seeing plenty of balance issues but he did manage an outing yesterday without using his rollator, he used his cane instead.  He hasn’t done that for a very long time.

     He really did seem to be in better spirits the last two days than I’ve seen him in a while. 

     If things keep going this well I can see me getting to my Pennwriters conference in May.  Whoohoo!

“Rollator”, to help with walking (Photo credit: Wikipedia)

     Thursday morning, I woke to the sound of The Curmudgeon in distress, leapt out of bed and ran to see what was going on.  He’d fallen, got his foot tangled in the bathroom rug.  He couldn’t get up.  My neighbor wasn’t available either.

     By the time I finally got The Curmudgeon to his bed, sweat poured off me as if I’d just stepped out of a downpour, and we have the AC on.  By then I was also cussing up a storm.  He scares me so much when he does that, and I feel so helpless, all I can do is cuss.  He lets me blow off steam, he knows I need to do it.

      Once I had him settled in, I went down to take care of the dogs.  When they were pottied and fed, I grabbed a cup of coffee, sat at my computer and caught up on the latest news.

     I still hadn’t cooled down by the time I’d had my second coffee.  I called G and told her not to worry about her dinner.  I was going to take care of it. 

     Later, I picked up two subs, one for G and the other for me.  The Curmudgeon had a hamburger steak, and his favorite tater tots since he can’t eat a sub.  His idea, not mine.

     I hope when I wake today, I will have an easy day.  I need one for a change.

     You all have a good one.

English: These are what tater tots look like. (Photo credit: Wikipedia)

   So the appointment at the neurologist didn’t go as hoped.  On the bright side, the MRI of his spine didn’t show any new lesions.  On the dark side, his EEG has them worried.

     Now they want an MRI of his brain with contrast.  He has to have blood work done beforehand because the hospital won’t do the MRI without the blood work.

     His nurse practitioner (with whom he had the appointment) and his neurologist were both in the room at the end of the appointment.  Not something that happens often and something I find a tad disconcerting. 

     There big concern was his one medication, Ampyra.  It can cause seizures.  What they found on his EEGs had them concerned. 

     He is showing more muscle weakness as of late.  His balance is poor and he needs to use the walker and rollator more. 

     I can see the day coming where I will need to get help in for him, and I have no idea how we will manage to pay for that.

     What scares me the most, is that the time to do this, is coming closer at a faster rate.

     Well, we’ll deal with it when it gets here.  For now, as usual, it’s one day at a time.

You all have a good one.