Swimming Against The Current

I have organized a dystance4dystonia walk.  It will be held at the Montachusett Regional YMCA in Fitchburg, MA on May 19, 2012.  It is at 9 am and is $25 to register.  The $25 will go to the Dystonia Research foundation to help find a cure.  So, please help me raise money for a great cause. Come Walk for a Cure!  Here is the registration page: http://www.dmrfevents.org/event.php?419817

I've been seeing my neurologist one to two times a week for a few weeks now.  Next Thursday will be 6 weeks since the surgery, which means I don't have to be so careful lifting and I can bring Hailey back to swim lessons.  I'm looking forward to that.  I am also going to be starting a mommy and me class at the Y for anyone interested.  It's going to be on Thursday's from 9-10 and free to family members.  There will be stories, music, learning and fun!  Just a little playgroup for young kids.  My neurologist has been changing the settings a little bit each time and I am at 4.7V for the right side and 6.5V for the left.  Both hands are opening very well and he is pretty happy with it.  He said he still has some playing to do because its not "perfect" but he did have me showing everyone in the office how well I could open my hands!  I am going to physical therapy now to stretch my fingers and hopefully that will prevent me from having surg...

Last week, Dr, Novak turned my DBS on.  I didn't have any improvement but I also didn't have any side effects.  He moves slow because they cant turn it too high in one visit.  I went back on Monday and he turned up the right side (left side of my body) to 4.5V and the left side to 4.2V.  As I said before, my left hand opened last time when the voltage was at 4.5.  This time, my right hand was much looser and I could move it a little but my left hand was still pretty tight.  I'm not that familiar with the settings of the DBS, so Im not sure what he had that at. I went back and saw him again yesterday.  He turned both sides up then had me wait a half hour to make sure I didnt have any side effects.  He then turned it up again, had me wait, then turned it up again.  At the end of last programming for the day, both hands were moving pretty good.  I can now just about open my right hand almost all the way.  My left hand is much looser a...

On Wednesday I went to see Dr. Novak to get "turned on" and programmed for the first time.  He turned on both sides and I didn't feel anything.  Last time the voltage was at 4.5 before my hand opened but because they have to take it slow, he only put it at 2 for now.  I have to go back Monday for more.  Yesterday, my foot started acting up on me pretty bad.  It went into spasm more times then I could count and my leg has been so sore.  It has still been bothering me today.  Dr. Novak told me to turn off the stimulator for a day to see if its from the programming.  I turned it off this morning and there has been no change so I dont think it is from that.  I also have a weird feeling in my left thumb.  Its burning and feels very weak.  I hope this doesnt mean I am losing that finger.  Anyway, atleast the DBS is in so now we just have to play with the settings.  Ill update everyone again next week! Have a great weekend!!