Re: [TMIC] TM Questions for new TM Patient

[JHarper33]

Hello, and welcome to the TMIC! I am sorry your mom has had to deal with TM -- but glad you were able to find us.   I had some swelling, but not 40 lbs. worth. I was only on prednisone for 3 days. I still get a little bit of swelling in my left hand and ankles. I did have a heavy feeling in my legs for a long time, but I don't know if it had anything to do with fluid or if it was just a weird feeling.   I live with my family (husband and sons), but as far as ability goes, I could live alone if needed. I couldn't have the first few months after TM, though.   Some dear folks from our church installed hand rails on the stairway and in the bathroom. I couldn't have functioned, at least not very well, without those at first.   I have had jerky movements with one hand (my left hand was affected by TM but the right wasn't) and in other muscles. Since it is not frequent or too bothersome I don't take anything for it.   I don't remember how long it took me to go from a walker to a cane -- I wish I had kept a journal then. I think it was just 2-3 months or so.   I do drive but didn't at first. I could always move my legs, but the feeling was inaccurate and the movement hard to control at first, so I didn't drive for a while. I don't remember when I started driving again, but it was well within the first year, maybe within 6 months.   Hope others chime in with their answers. Hope this is some help. :-)   Barbara H. http://barbarah.wordpress.com/       In a message dated 8/19/2006 10:03:14 AM Eastern Standard Time, [EMAIL PROTECTED] writes:  HI everyone, This is my first time posting to this group, although I have been a member for a couple of months now. I have a couple of questions I hope some of you can help me with.  My mom was newly afflicted with TM 3 1/2 months ago on May 3, 2006.  She was originally paralyzed from the waist down. We are told she is improving rapidly, so we hope it continues. We had a setback. A month ago she blew up with 40 lbs of fluid, which was attributed mostly to the predisone, so she's not walking as good as she was. Luckily now thats starting to go down, and she's been weened off from 40 mg of predisone to now 10 and they want to completley ween her down.  She has just now after 3 1/3 months went home from the inpatient rehab. But she's continuing her PT/OT through home care.  We have a couple of questions that the doctors aren't answering, but we are hoping others with the same disease can.  They are: 1.  How many of you also have fluid problems? Do your legs feel heavy due to extra fluid? I'm on Bumex (duratic) to ge the fluid out. This is what makes her urinate a lot. Does anybody ahve any suggestions in what kind of sheets or other things to use to help this?  She does have a vinyl sheet.  She has some control, but not completely. 2.  How many of you live by yourself without any type of assistant living? If so, what assistant tools do you use (ex. cane, walkers, nothing, etc).  3.  What medications do you take to help with the spasticity/pins & needle feelings? 4.  Do any of you have jerking movements with your hands? 5.  Those of you who are walking with canes, how long did it take you to get there from using a walker?  6.  Do any of you drive? If so, do you have driving restrictions? Thank you very much! We appreciate any feedback/help with these questions.