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!!

Yesterday I got all my staples out and Dr. Pilitsis said everything looks good.  I couldn't have asked for a better surgeon.  She is the kindest doctor I have ever met and she has helped me so much.  I am actually upset I wont be going back to NY to see her because I feel like she's more of a friend than a doctor.  Wednesday, I am seeing Dr. Novak to get "turned on" and programmed.  I am excited to see how it goes with both sides this time.  I cant wait to open my hands!! I hope everyone has a very safe and happy New Year!!

Last wednesday, my parents and I got in the car and started our trip to New York around 3am.  It took just about 3 hours to get there so we arrived by 6:00.  My pre-op appointment wasn't until 7 (arrival time 6:45) and the doors to the building didnt open until 9:00 (didnt really make any sense).  Anyway, I ended up behind a doctor who could get in so we managed to get into the building.  We went to Dunkin Donuts and got some breakfast and wasted time until I could check in.  By 7:00, I was heading in for pre-op and didnt really know what to expect because they said it could take 2 hours but last time it took less than an hour.  They did all my vitals, asked about my medical/surgical history and sent me to the lab for blood work.  It all took about a 1/2 hour and then I didn't have my appointment with Dr. Pilitsis (the surgeon) until 9:15. We wasted some more time then went to see her.  She explained what was involved in the surgery, about how lon...

So the time has come.  I never really thought it would but its starting to hit me that its real.  Tomorrow morning we are leaving at 3am to head to NY.  I have to be there are 6:45am for pre-op and Thursday for surgery.  I am so nervous.  The thing is though, I am more upset and nervous about leaving Hailey.  I know in my heart she will be absolutely fine, she will be in GREAT hands and she loves her grammy so much, I know she will have a wonderful time.  I am more worried about me missing her on Christmas morning and seeing that beautiful face as she walks out and sees all her presents.  Not that she knows its Christmas or has any idea what presents really are but I was looking forward to it. Anyway, I'm sure everything will be fine.  The plan is to do both sides and both battery packs all at the same time and as long as I am feeling good and I am ok to leave, I will be coming home on Christmas eve.  I'll meet Ryan at my parents so I c...