Going Home Thursday

I had intended to post updates while I was in the hospital, but things have been a little crazy.  Plus, I have had a lot more trouble with my hands this time.  It has affected my writing and definitely my typing and many other areas I have yet to discover.  I'm sure it will be an issue with my sewing. 

When I moved over to rehab, I was pretty weak.  After all the evals were in and we got a response from insurance, it was decided I would get to go home on the March 14th.  That would make my full hospitalization 3 weeks long.  Now, I have been in rehab for 11 days and I am doing better than they expected, so now I get to go home on the 12th, after Dr. Latorre refills my baclofen pump.

There has been several things different about this hospitalization.  First of all, the movement to my upper body came back slower than normal.  It took 3 days for me to start being able to move my hands, then once I could wiggle my fingers a little bit, it took more than 24 hours before my arms were strong enough to feed myself. 

I had my evaluations at rehab 6 days after the onset of paralysis.  Usually, I don't have too much trouble with the slide board transfers on my eval day.  They are a little challenging due to weakness, but I know the technique well.  This time, I could not transfer on my own.  I needed help to get from the bed to my chair.  I still had the indwelling catheter in, so I didn't have to worry about transferring to the toilet just yet.  Toilet transfers are much more difficult than bed transfers.  The slide board doesn't fit onto a toilet seat very well.  During my 2nd or 3rd admission for ascending paralysis, I discovered it is much easier to just slide directly over to the toilet from my wheelchair rather than trying to use the slide board.  I have been doing it that way ever since until I can do stand-pivot transfers.  However, my catheter was discontinued around 6pm on the 1st day, but I was already done with therapy, so I had to I&O cath from bed.  It didn't take too long before my transfers were much easier.  They still weren't easy though.

The other thing that was different this time is the staff has been more knowledgeable about my diagnosis.  There was a rather extensive medical journal article published recently about Functional Motor Disorder, which is just another name for Functional Neurological Disorder.  Recently, the staff here had a journal review of the article.  This means they have all heard of it and actually have some information about how it is treated.  This time my therapy has been a bit different.  We have tried to do  more movements that are "natural" so my brain will use the proper pathways and not the messed up pathways.  We are going to continue using this PT method in outpatient PT.  I am also going to start cognitive behavior therapy to start trying to eliminate the messed up "software" in my brain so it will only use the proper "software"/pathways.  Hopefully this will decrease the severity of the paralysis episodes and put more time between the paralysis episodes.  Ideally, I would like them to eventually stop, but I know from the blessings I have received that the time for that has not come yet.

The other big news I have is I have a new calling.  I have been serving as the Relief Society secretary in our ward for the last 8 months.  I was supposed to meet with a member of the bishopric the Sunday I was admitted.  When my paralysis started, I called the executive secretary and told him I wasn't going to be at church the next day and asked if they could do the interview over the phone.  I got a call about an hour later from the 2nd counselor in the bishopric releasing me as secretary then calling me as 1st counselor in the Relief Society presidency.  I was a little nervous about a calling with so much responsibility, but I know that the Lord is aware of my situation and the new Relief Society president is aware of it also, since she is my ministering sister.

I found a book on Amazon called Overcoming Functional Neurological Symptoms.  It is suppose to help with reprogramming my brain and helping me access the normal pathways in my brain and eliminating the abnormal pathways the FND has created.  I just started working on it.  It is actually a workbook, not just a self-help book.  I will also be starting cognitive behavior therapy specific to FND that will hopefully help eliminate those abnormal pathways.  I am starting things off by keeping a daily journal on how I feel both emotional and physically as well as documenting the things I do.  We are hoping we can find the trigger for the paralysis episodes.