Swimming Against The Current

As many of you know, I have been planning a dystance4dystonia walk for a while now.  The day has come and gone quicker than I would have liked but it was a very fun day.  I am very proud of myself and very happy to announce that we raised right around $5,000 towards finding a cure for dystonia.  We had about 60 adult walkers and close to 20 children there.  There were 5 people (including myself) with dystonia and one mother of a girl with dystonia who was unable to attend.  It was a gorgeous day and everyone seemed to enjoy themselves.  I am hoping to raise atleast double this next year.  I just want to say thank you to the YMCA for letting me host the event there.  I have worked at the y for 12 years so everyone knows my story and they were very supportive of me.  I also want to thank my family who helped me through everything.  Not only did they help plan this walk but they were by my side every step in my life as I struggled to find a diagnosis and then they were there holding my ha

A couple weeks ago, as I had mentioned before, my hand curled back in.  I tried to contact my doctor several times to help not only my hand but the very painful back spasms as well.  I never heard from him, which was unusual because he always emails me right back!  I finally called the office again and they told me he was on vacation for two weeks and another neurologist was seeing his patients.  It took a few days to finally talk to this doctor, who agreed to see me last Friday.  I was having a lot of facial twitching and my hand was still curled in.  She decided to change my settings on my DBS a little but didn't want to mess with it too much since she wasn't my regular doctor.  She changed the settings and almost immediately after, my whole body went into spasm.  My foot curled in, my neck pulled back, face still twitching, hand and wrist curled and back twisting.  I have experienced this only a few times before and never at the doctors but I guess its better to happen there

I've come to the conclusion that it doesn't help your problem to be depressed about it.  It doesn't help to complain or feel sorry for yourself.  It doesnt even help to call the doctor.  What I have will never be fixed and I need to get over that fact and move on.  I feel like I have been trying very hard to be positive and not to let my feelings show.  No one knows how hard it is to live with dystonia unless you have it.  Does anyone know what its like to take care of a 19 month old with one hand?  Make supper while holding her?  Even going grocery shopping?  There are many things in life that most people take for granted.  I never thought about how much I use my hand, until I couldnt use it anymore.  When my hand curled in, my life changed.  I had to adapt to life without a left hand.  It was hard but I did it.  I went three years in a wrist brace and my fingers curled in, the whole time fearing I may eventually lose those fingers.  When I had DBS, my life changed again,