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 hand as I went through two brain surgeries. I want to thank my amazing fiance for his love and support, and my beautiful daughter for giving me the strength to fight. I want to thank the families who donated and came to walk from as far away as Boston. There was one family who I dont even know who donated $500. I just cant get over how generous people are. I want to thank my very good friend Bill, who I havent seen in a long time and showed up to give me his support and donated $300!! I want to thank my friends who helped set up, clean up, register people, sell raffle tickets and get donations for this special day. My aunts, uncles and cousins were more supportive then I could of ever asked for and I cant thank them enough for all they've done. Also, thank you to everyone who donated baskets, water, fruit and anything else! Overall, people were just incredible and without all of their help, it wouldnt have been so successful. I also want to thank the Dystonia Medical Research foundation for giving me this amazing opportunity to promote awareness and to raise this money to find a cure! They helped me plan this whole event and were very helpful through everything! I am very pleased with how the day went and I am so excited to do it again next year!!!
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 ...
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