Dystance4Dystonia

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

Comments

update on Dystonia and Family

I have been doing as well as could be expected. I am back in Florida so it's nice to be with Ryan. Although I am still upset about the whole thing, I am trying hard to smile and not let it show. The spasms have returned and have gotten worse since the DBS was removed. When I suck on a piece of candy or ice, my throat tightens up. It's very scary but Im hoping it won't get any worse. My neck also twitches sometimes and my foot spasms have come back. My hand is curled in but if I think about it, I can straighten my wrist (not my fingers). The most upsetting part is that I was just looking at pictures of myself the day after DBS and I had a huge smile on my face because I had made it through and then a couple weeks later there was a picture of my hand open. I had never been so excited as I was that day. I had so much in my head that I wanted to do now that I could use my hand and most of it involved Hailey. Hailey helped me ...

Pregnant With Dystonia

Well, hello there and welcome to my blog. These last couple months have been stressful, exciting, painful, happy and scary. I'm working on keeping these feelings positive! A couple of years ago I was diagnosed with Dystonia. My left hand has curled into a fist and I can no longer use my fingers. My wrist is permanantly stuck in a spasm and I now wear a brace 24/7. I get daily spasms in my feet and sometimes its hard to walk because I don't know when it is going to happen. I have muscle spasms in my back quite often and occassionally in my neck and jaw. On top of the dystonia, I have multi-directional instability in both of my shoulders, causing them to dislocate very frequently. In February, 2010 I took a home pregnancy test and it was positive! It was the greatest thing that has ever happened to me. Although my boyfriend and I were a little nervous, we smiled and started to plan our life together with our baby that was on the way. Since then, I haven't been able ...

Updates ❤️

It's 430 in the morning and i wake up to Max's whimper over the baby monitor. I get up to go get him and the first thing I notice is that I cant open the door. My left hand is so weak I cant turn the door knob. I try with my right hand even though I have no feeling in it. As the door opens my forearm goes into spasm and causes excrutiating pain. i've had quite a few problems with my arms and hands over the years, but this is the worst it's been. The Botox wasn't working so we tried a new medication called xeomin and my left hand seems to be opening a bit, but it's completely useless because it's so weak. I can't do anything with it. My right arm has been affected by the dystonia, but also I have carpal tunnel so the two of those together also makes doing anything very difficult. Hopefully a DBS adjustment will help soon. After Max was born, I was diagnosed with a pituitary macro prolactinoma. I didn't know what it was at first, but then found ou...

Swimming Against The Current

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